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Sample records for receiving fontan palliation

  1. Pregnancy and delivery in women after Fontan palliation.

    NARCIS (Netherlands)

    Drenthen, W.; Pieper, P.G.; Roos-Hesselink, J.W.; Lottum, W.A. van; Voors, A.A.; Mulder, B.J.M.; Dijk, A.P.J. van; Vliegen, H.W.; Sollie, K.M.; Moons, P.; Ebels, T.; Veldhuisen, D.J. van

    2006-01-01

    OBJECTIVES: To evaluate the outcome of pregnancy in women after Fontan palliation and to assess the occurrence of infertility and menstrual cycle disorders. DESIGN AND PATIENTS: Two congenital heart disease registries were used to investigate 38 female patients who had undergone Fontan palliation

  2. Pregnancy and delivery in women after Fontan palliation

    NARCIS (Netherlands)

    Drenthen, W.; Pieper, P. G.; Roos-Hesselink, J. W.; van Lottum, W. A.; Voors, A. A.; Mulder, B. J. M.; van Dijk, A. P. J.; Vliegen, H. W.; Sollie, K. M.; Moons, P.; Ebels, T.; van Veldhuisen, D. J.

    Objectives: To evaluate the outcome of pregnancy in women after Fontan palliation and to assess the occurrence of infertility and menstrual cycle disorders. Design and patients: Two congenital heart disease registries were used to investigate 38 female patients who had undergone Fontan palliation

  3. Effect of aspirin and warfarin therapy on thromboembolic events in patients with univentricular hearts and Fontan palliation.

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    Potter, Brian J; Leong-Sit, Peter; Fernandes, Susan M; Feifer, Andrew; Mayer, John E; Triedman, John K; Walsh, Edward P; Landzberg, Michael J; Khairy, Paul

    2013-10-09

    Patients with univentricular hearts and Fontan palliation are at risk for thromboembolic complications. While aspirin and warfarin therapies are currently the mainstay of prophylaxis, controversy exists as to the optimal prevention strategy. A cohort study was conducted on the New England registry of patients born in 1985 or earlier with Fontan surgery at Boston Children's Hospital, in order to assess and compare the effect of prophylactic aspirin and warfarin on incident thromboembolic events. A total of 210 qualifying patients (49% male) underwent Fontan surgery at a median age of 8.5 years: 48.6% had a right atrium to pulmonary artery anastomosis, 11% a right atrium to right ventricle conduit, 38.6% a lateral tunnel, and 1.9% an extracardiac conduit. No thromboembolic prophylaxis was prescribed to 50.0%, whereas 24.3% received aspirin, and 25.7% warfarin. In multivariate analyses, lack of aspirin or warfarin was associated with a significantly higher thromboembolic event rate when compared to therapy with either [hazard ratio 8.5, 95% confidence interval (3.6-19.9), P aspirin or warfarin was associated with a significantly lower rate of incident thromboembolic events following Fontan palliation, with no difference between the two therapies. © 2013.

  4. Reduced physical exercise and health-related quality of life after Fontan palliation.

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    Hedlund, Eva R; Lundell, Bo; Villard, Li; Sjöberg, Gunnar

    2016-11-01

    A growing number of patients with Fontan circulation are reaching adulthood, and there is increasing concern about their physical performance and quality of life. This study compared self-reported exercise and measured activity with quality of life in patients after Fontan palliation and healthy controls. Physical exercise during an average school week was reported by 30 Fontan circulation patients aged eight to 20 years, and 25 healthy controls, followed by accelerometer recordings over seven days. All subjects and their parents answered a questionnaire on quality of life. Patients reported spending less time exercising each week than the controls (114 ± 66 minutes vs. 228 ± 147 minutes, p exercise than healthy controls and their quality of life was lower than the controls. We speculate that promoting structured regular physical exercise could improve the quality of life of Fontan patients. ©2016 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

  5. Palliative arterial switch as first-line treatment before the fontan procedure in patients with single-ventricle physiology and subaortic stenosis.

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    Gil-Jaurena, Juan Miguel; Zabala, Juan-Ignacio; Albert, Dimpna C; Castillo, Rafael; González, Mayte; Miró, Luis

    2013-07-01

    There are several techniques for the palliative treatment of patients with single-ventricle physiology, ventriculoarterial discordance and subaortic stenosis. The Fontan procedure relies on optimal initial palliation to avoid the development of subaortic stenosis (as well as ventricular hypertrophy and diastolic dysfunction). We present seven patients with single-ventricle physiology, transposition of the great arteries and subaortic stenosis, with low systemic output and high pulmonary flow, aged 21 to 383 days (median, 75) and weighing between 3.4 and 9.6kg (median, 4.2). All were treated with a palliative arterial switch, thus "switching" their subaortic stenosis to subpulmonary stenosis. Six patients also underwent aortic arch surgery, 4 an atrial septectomy, and 1 a subaortic membrane resection. One patient died after surgery, another developed recoarctation, which was treated with an angioplasty, 3 patients reached the Glenn stage and 2 the Fontan stage. All had good ventricular function. A palliative switch is an effective initial treatment for single-ventricle physiology with transposition of the great arteries and subaortic stenosis. This complex initial technique produces good results and allows the patient to progress to the Glenn or Fontan stage. Copyright © 2013 Sociedad Española de Cardiología. Published by Elsevier Espana. All rights reserved.

  6. Perception of older adults receiving palliative care

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    Fernanda Laporti Seredynskyj

    2014-06-01

    Full Text Available The present study aimed at understanding the perception of older adults who are receiving palliative oncological care on self care in relation to different stages of the disease and how such perception affected their lives. This is a qualitative study using oral history conducted with 15 older adults receiving palliative chemotherapy treatment in a health institution. The following categories emerged: social network, perspectives for confronting life, changes and spirituality. It is necessary for nursing staff to understand this process so that the measures implemented take into account all of the implications of the disease and aim at improving quality of life.   doi: 10.5216/ree.v16i2.22795.

  7. Low total, low-density lipoprotein, high-density lipoprotein, and non-high-density lipoprotein cholesterol levels in patients with complex congenital heart disease after Fontan palliation.

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    Whiteside, Wendy; Tan, Meng; Yu, Sunkyung; Rocchini, Albert

    2013-06-01

    To test the hypothesis that patients with complex congenital heart disease who have undergone Fontan palliation have low total cholesterol, low-density lipoprotein cholesterol (LDL-C), and high-density lipoprotein cholesterol (HDL-C) levels. We retrospectively reviewed the random serum lipid profiles obtained at cardiology clinic visits between May 2010 and November 2011 in patients who had undergone the Fontan procedure. We compared these serum lipid levels against age- and sex-matched established normal data from the Third National Health and Nutrition Examination Survey. Eighty-eight patients who had undergone the Fontan procedure also had laboratory test data obtained during their visits. Median total cholesterol level in the Fontan group was 127 mg/dL (IQR, 116-144 mg/dL), median HDL-C was 40 mg/dL (IQR, 33-45 mg/dL), median non-HDL-C was 86 mg/dL (IQR, 76-109 mg/dL), and median LDL-C was 66 mg/dL (IQR, 57-83 mg/dL). Total cholesterol, LDL-C, non-HDL-C, and HDL-C levels were significantly lower in patients who had undergone a Fontan procedure compared with age- and sex-matched normal individuals (mean z-score, -1.4, -1.2, -1.0, and -1.0 respectively; all P<.0001). Cholesterol levels were below the 25th percentile for age and sex for total cholesterol in 82% of patients, for LDL-C in 76%, for non-HDL-C in 67%, and for HDL-C in 57%. Patients who have undergone the Fontan procedure have significantly lower serum total cholesterol, LDL-C, HDL-C and non-HDL-C levels than age- and sex-matched normal individuals. Although the implications of this finding are unknown, it raises the possibility of abnormalities in cholesterol absorption, synthesis, or catabolism in this patient population. Copyright © 2013 Mosby, Inc. All rights reserved.

  8. Expressive writing in patients receiving palliative care: a feasibility study.

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    Bruera, Eduardo; Willey, Jie; Cohen, Marlene; Palmer, J Lynn

    2008-01-01

    Patients with advanced cancer receiving palliative care often experience severe physical and psychosocial symptoms. However, there are limited resources for psychological and emotional support. Expressive writing has shown decreased anxiety level in young and healthy people suffering from a number of stressors. The purpose of this study was to determine the feasibility of expressive writing in patients receiving palliative care and the most suitable outcomes of expressive writing in this patient population. In this pilot study, patients were randomly assigned to either the expressive writing group (EW) or the neutral writing group (NW). Anxiety level before and after the writing session was compared between the two groups. Writing materials were content analyzed using standard qualitative research methods. A total of 24 patients (12 in EW and 12 in NW) were enrolled in the study between October 2006 and January 2007. Although the majority of patients (83%-100%) were able to complete all baseline assessments, poor adherence was observed during the follow-ups. Only 8% of patients completed the 2-week study. There was no significant difference in the State-Trait Anxiety Inventory (STAI) State-Anxiety scores at baseline, before and after each writing session between the EW and NW groups. Our rapid accrual suggests that palliative care patients are interested in participating in studies such as expressive writing. The high level of adherence to the baseline assessments indicates that these assessments were not particularly difficult for our patients to complete. Future studies may need to include patients with better performance status, better patient education, means of emotional expression (i.e., audio recording, telephone interview) and improved adherence. We conclude that clinical trials of expressive writing in the palliative care setting are not feasible unless they undergo major modification in methods compared to those previous reported in other patient

  9. Do Patients with Advanced Cancer and Unmet Palliative Care Needs Have an Interest in Receiving Palliative Care Services?

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    Park, Seo Young; Maciasz, Rachael; Arnold, Robert M.

    2014-01-01

    Abstract Background: It is not known whether unmet palliative care needs are associated with an interest in palliative care services among patients with advanced cancer receiving ongoing oncology care. Objective: To assess the association between unmet palliative care needs and patient interest in subspecialty palliative care services. Design: Cross-sectional telephone survey. Subjects and setting: One hundred sixty-nine patients with advanced cancer receiving care from 20 oncologists at two academic cancer centers. Measurements: Surveys assessed palliative care needs in six domains. Patients were read a description of palliative care and then asked three questions about their current interest in subspecialty palliative care services (perceived need, likelihood of requesting, willingness to see if their oncologist recommended; all outcomes on 0–10 Likert scale). Results: The vast majority of patients described unmet palliative care needs, most commonly related to psychological/emotional distress (62%) and symptoms (62%). In fully adjusted models accounting for clustering by oncologist, unmet needs in these domains were associated with a higher perceived need for subspecialty palliative care services (psychological/emotional needs odds ratio [OR] 1.30; 95% confidence interval [CI] 1.06–1.58; p=0.01; symptom needs OR 1.27; 95% CI 1.01–1.60; p=0.04). There was no significant association between unmet needs and likelihood of requesting palliative care services. Willingness to see palliative care if oncologist recommended was high (mean 8.6/10, standard deviation [SD] 2). Conclusion: Patients with advanced cancer and unmet symptom and psychological/emotional needs perceive a high need for subspecialty palliative care services but may not request them. Efforts to increase appropriate use of subspecialty palliative care for cancer may require oncologist-initiated referrals. PMID:24673544

  10. Palliative care for patients with cancer: do patients receive the care they consider important?

    NARCIS (Netherlands)

    Heins, M.J.; Hofstede, J.; Rijken, P.M.; Korevaar, J.C.; Donker, G.A.; Francke, A.L.

    2017-01-01

    Background: Many patients with advanced cancer receive palliative care from a GP and homecare nurse. Care for physical/psychosocial well-being, respect for patients’ autonomy and information provision are important elements of palliative care, but it is not known whether patients receive the care

  11. Percutaneous interventions in Fontan circulation

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    Eduardo Franco

    2015-09-01

    Conclusions: Interventional catheterization procedures are often necessary to reach and maintain the fragile Fontan circulation, mainly in patients with right morphology systemic ventricles and fenestrated Fontan conduits.

  12. Anaesthesia for a minor procedure in a patient with fontan physiology

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    Shirley D′souza

    2012-01-01

    Full Text Available Fontan procedure is a palliative surgery done for patients born with single ventricle physiology. An understanding of the hemodynamic alterations in such a patient is important for successful perioperative management. We have discussed the anaesthetic considerations in a 12 year-old girl with complex congenital heart disease ultimately palliated by a Fontan operation, who was posted for Botox injections for upper limb spasticity under general anaesthesia.

  13. Surgical options after Fontan failure

    DEFF Research Database (Denmark)

    van Melle, Joost P; Wolff, Djoeke; Hörer, Jürgen

    2016-01-01

    OBJECTIVE: The objective of this European multicenter study was to report surgical outcomes of Fontan takedown, Fontan conversion and heart transplantation (HTX) for failing Fontan patients in terms of all-cause mortality and (re-)HTX. METHODS: A retrospective international study was conducted...... for failing Fontan surgery was arrhythmia (43.6%), but indications differed across the surgical groups (p

  14. Who Receives Home-Based Perinatal Palliative Care: Experience from Poland

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    Aleksandra Korzeniewska-Eksterowicz; Łukasz Przysło; Bogna Kędzierska; Małgorzata Stolarska; Wojciech Młynarski

    2013-01-01

    Context. The current literature suggests that perinatal palliative care (PPC) programs should be comprehensive, initiated early, and integrative. So far there have been very few publications on the subject of home-based PC of newborns and neonates. Most publications focus on hospital-based care, mainly in the neonatal intensive care units. Objective. To describe the neonates and infants who received home-based palliative care in Lodz Region between 2005 and 2011. Methods. A retrospective rev...

  15. Symptom assessment in elderly cancer patients receiving palliative care.

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    Pautex, Sophie; Berger, André; Chatelain, Catherine; Herrmann, François; Zulian, Gilbert B

    2003-09-01

    The purpose of this study is to examine the concordance of symptom assessment among the multiple raters in French-speaking elderly patients with an advanced cancer benefiting from palliative care. This study was conducted in a geriatric hospital with palliative care specificity. During 6 months, patient, nurse and physician completed the Edmonton symptom assessment system on two consecutive days. 42 patients with an advanced oncological disease were included. Mean age was 72+/-9.04 (range 52-88) and 23 were females. Mean mini mental status examination (MMSE) was 27.5+/-1.6. First assessment was completed at a median of day 8 after admission. Nurses, physicians and patients assessments were reproducible between days 1 and 2 (P>0.05). Pearson correlation coefficient significantly associated nurse assessment with patient assessment for pain, depression, anxiety, drowsiness, appetite and wellbeing (Ppatient assessment for pain, depression, drowsiness, appetite, wellbeing and shortness of breath (Ppatient score from both physicians and nurses scores weakly correlated all these factors (R2patients without cognitive failure and in stable general condition are consistent in their symptom assessment, and they have to be considered as the gold standard. Nevertheless, interdisciplinary assessment is probably a valid surrogate to self-assessment by the patient but only when the latter is truly impossible.

  16. Palliative Cancer Patients' Experiences of Participating in a Lifestyle Intervention Study While Receiving Chemotherapy.

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    Mikkelsen, Hilde Elisabeth Timenes; Brovold, Karianne Vassbakk; Berntsen, Sveinung; Kersten, Christian; Fegran, Liv

    2015-01-01

    Lifestyle interventions have promise in terms of their potential health benefits and as an empowerment tool for cancer patients. Nevertheless, documentation of palliative cancer patients experiences of participating in lifestyle interventions remains poor. The objective of this study was to explore how palliative cancer patients experience participation in a feasibility study focusing on multiple lifestyle interventions (physical, nutritional, smoking cessation, and stress management) while receiving chemotherapy. This was a qualitative design with semistructured interviews of 9 palliative cancer patients 3 to 4 months after inclusion to the lifestyle intervention. Data were analyzed according to a qualitative content analysis within a hermeneutic approach. Three main themes emerged: (1) adopting a healthier lifestyle, (2) taking on a more active role, and (3) boosting confidence. Participation made some participants feel guilty when they were not able to reach their own lifestyle goals. Participation in lifestyle interventions is valued by palliative cancer patients and may strengthen their coping abilities. However, some of the participants also expressed feelings of guilt and inadequacy. Thus, the organizational aspects of interventions need to be considered carefully to minimize the possibility of causing increased strain on the participants, who already experience the burden of coping with their disease. This study provides a unique insight into the palliative cancer patients experiences of participating in a trial focusing on multiple lifestyle interventions while receiving chemotherapy. The results may provide guidance for healthcare professionals in their efforts to help palliative cancer patients adopt a healthier lifestyle and to help patients increase their coping abilities.

  17. Management of early Fontan failure: a single-institution experience.

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    Murphy, Michael O; Glatz, Andrew C; Goldberg, David J; Rogers, Lindsay S; Ravishankar, Chitra; Nicolson, Susan C; Steven, James M; Fuller, Stephanie; Spray, Thomas L; Gaynor, J William

    2014-09-01

    To analyse the incidence and outcomes of early Fontan failure (EFF) in a large contemporary cohort of palliated patients. A retrospective, single-centre study of all patients undergoing primary Fontan from 1 July 1995 to 31 December 2009 was performed. EFF was defined as death, need for extracorporeal membrane oxygenation (ECMO), Fontan takedown to superior cavopulmonary connection (SCPC) or transplantation within 30 days of the Fontan procedure. The incidence and outcomes were summarized with descriptive statistics, and risk factors for EFF were identified. A total of 592 patients underwent primary Fontan procedure during the study period; 67% had a dominant right ventricle. An extracardiac conduit (ECC) was used for Fontan completion in 60.5%, with the remainder having a lateral tunnel. EFF occurred in 11 patients (1.9%), all of whom had ECC. ECMO was used in 5 patients, 5 had Fontan takedown and 2 had heart transplantation. Five of eleven, or 46%, study subjects died as opposed to an overall mortality for primary Fontan of 0.8%. Among patients who had Fontan takedown to SCPC, long-term survival was 80%. By univariate analysis, elevated ventricular end-diastolic pressure (9.5 ± 3.3 vs 7.4 ± 2.7 mmHg, P = 0.019) and total circulatory support time (99 ± 33 vs 71 ± 23 min, P = 0.001) were risk factors for EFF. The mean follow-up for the 6 hospital survivors was 5.9 years. There was one late transplant-related death. Of the 4 surviving patients who had Fontan takedown to a SCPC, 3 underwent subsequent Fontan completion and 1 underwent biventricular repair. EFF is rare in the current era, but is associated with significant mortality. High filling pressures and a prolonged intraoperative course are risk factors for EFF. Of the management strategies available, Fontan takedown to an intermediate pathway appears to be associated with the best outcomes. © The Author 2014. Published by Oxford University Press on behalf of the European Association for Cardio

  18. The Fontan pathway: What′s down the road?

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    Khambadkone Sachin

    2008-01-01

    Full Text Available The Fontan circulation results from routing of the systemic venous blood to the pulmonary circulation without a hydraulic source of a ventricle. Although a hypertrophied right atrium was thought to be essential for this circulation, the current form of the operation has neither the right atrium nor any valves in the venous circulation that is connected to the pulmonary arteries directly. Modifications in the operative model was one of the early steps in improving outcome. Use of fenestration, staging of Fontan completion and better perioperative management have led to a significant drop in mortality rates in the current era. Despite this, there is late attrition of patients with complications such as arrhythmias, ventricular dysfunction, and unusual clinical syndromes of protein-losing enteropathy (PLE and plastic bronchitis. Management of failing Fontan includes a detailed hemodynamic and imaging assessment to treat any correctable lesions such as obstruction within the Fontan circuit, early control of arrhythmia and maintenance of sinus rhythm, symptomatic treatment for PLE and plastic bronchitis, manipulation of systemic and pulmonary vascular resistance, and Fontan conversion of less favorable atriopulmonary connection to extra-cardiac total cavopulmonary connection with arrythmia surgery. Cardiac transplantation remains the only successful definitive palliation in the failing Fontan patients.

  19. Life perceptions of patients receiving palliative care and experiencing psycho-social-spiritual healing.

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    Li, Lingsheng; Sloan, Danetta H; Mehta, Ambereen K; Willis, Gordon; Weaver, Meaghann S; Berger, Ann C

    2017-07-01

    It is important to identify, from the patients' perspectives, the different factors that contribute toward psycho-social-spiritual healing. This was a qualitative study that took place at a large research center, an underserved clinic, and a community hospital. We used a needs assessment questionnaire and open-ended questions to assess the constituents of psycho-social-spiritual healing: (I) how previous life experiences affected patients' present situations in dealing with their illnesses; (II) barriers to palliative care, and (III) benefits of palliative care. Of a total of 30 participants from 3 different study sites, 24 (80%) were receiving inpatient or outpatient palliative care at a research center. Thirteen (43%) participants were female, 10 (33%) were Black/African American, and 16 (53%) reported being on disability. While the initial shock of the diagnosis made participants feel unprepared for their illnesses, many looked to role models, previous work experiences, and spiritual as well as religious support as sources of strength and coping mechanisms. Barriers to palliative care were identified as either external (lack of proper resources) or internal (symptom barriers and perceived self-limitations). The feeling of "being seen/being heard" was perceived by many participants as the most beneficial aspect of palliative care. The needs assessment questionnaire and open-ended questions presented in this study may be used in clinical settings to better help patients achieve psycho-social-spiritual healing through palliative care and to help clinicians learn about the person behind the patient.

  20. Receiving palliative treatment moderates the effect of age and gender on demoralization in patients with cancer.

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    Sigrun Vehling

    Full Text Available BACKGROUND: Existential distress is an important factor affecting psychological well-being in cancer patients. We studied occurrence and predictors of demoralization, a syndrome of existential distress, in particular the interaction of age, gender, and curative vs. palliative treatment phase. METHODS: A cross-sectional sample of N = 750 patients with different tumor sites was recruited from in- and outpatient treatment facilities. Patients completed the following self-report questionnaires: Demoralization Scale, Patient Health Questionnaire-9, Illness-Specific Social Support Scale Short Version-8, and physical problems list of the NCCN Distress Thermometer. Moderated multiple regression analyses were conducted. RESULTS: We found high demoralization in 15% and moderate demoralization in 8% of the sample. Curative vs. palliative treatment phase moderated the impact of age and gender on demoralization (three-way interaction: b = 1.30, P = .02: the effect of age on demoralization was negative for women receiving palliative treatment (b = -.26, P = .02 and positive for men receiving palliative treatment (b = .25, P = .03. Effects of age and gender were not significant among patients receiving curative treatment. Female gender was associated with higher demoralization among younger patients receiving palliative treatment only. Analyses were controlled for significant effects of the number of physical problems (b = 6.10, P<.001 and social support (b = -3.17, P<.001. CONCLUSIONS: Existential distress in terms of demoralization is a relevant problem within the spectrum of cancer-related distress. It is associated with a complex interaction of demographic and medical patient characteristics; existential challenges related to palliative treatment may exacerbate the impact of age- and gender-related vulnerability factors on demoralization. Psychosocial interventions should acknowledge this interaction in order to address the individual nature of existential

  1. Delirium in adult patients receiving palliative care: a systematic review of the literature.

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    Sánchez-Román, Sofía; Beltrán Zavala, Cristina; Lara Solares, Argelia; Chiquete, Erwin

    2014-01-01

    Delirium in palliative care patients is common and its diagnosis and treatment is a major challenge. Our objective was to perform a literature analysis in two phases on the recent scientific evidence (2007-2012) on the diagnosis and treatment of delirium in adults receiving palliative care. In phase 1 (descriptive studies and narrative reviews) 133 relevant articles were identified: 73 addressed the issue of delirium secondarily, and 60 articles as the main topic. However, only 4 prospective observational studies in which delirium was central were identified. Of 135 articles analysed in phase 2 (clinical trials or descriptive studies on treatment of delirium in palliative care patients), only 3 were about prevention or treatment: 2 retrospective studies and one clinical trial on multicomponent prevention in cancer patients. Much of the recent literature is related to reviews on studies conducted more than a decade ago and on patients different to those receiving palliative care. In conclusion, recent scientific evidence on delirium in palliative care is limited and suboptimal. Prospective studies are urgently needed that focus specifically on this highly vulnerable population. Copyright © 2013 SEP y SEPB. Published by Elsevier España. All rights reserved.

  2. Oral health assessment and mouth care for children and young people receiving palliative care. Part one.

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    Sargeant, Stephanie; Chamley, Carol

    2013-03-01

    This is the first part of two articles exploring oral health problems and treatments for children receiving palliative care, successful management of which can improve considerably the quality of life for this group of children and young people. Part one includes an adapted oral health assessment tool for use in children and young people with complex and palliative healthcare needs that has the potential to help nurses identify and monitor oral health problems and prevent or minimise oral problems from developing. Part two--to be published next month--focuses on basic oral hygiene and the management of specific oral health problems.

  3. Adjusting Bowel Regimens When Prescribing Opioids in Women Receiving Palliative Care in the Acute Care Setting.

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    Gonzales, Lucia K; Delmastro, Margaret A; Boyd, Denise M; Sterling, Melvyn L; Aube, Patricia A; Le, Rosemary N; Traucht, Lisa; Quinal, Leonida R; Georges, Jane M; Glaser, Dale N

    2016-08-01

    In palliative medicine, constipation is the third most common symptom after pain and anorexia, causing some patients to discontinue opioid therapy. Women experience higher incidence of constipation than men. The prevalence of infrequent bowel movements (opioids were studied. Referral to the palliative care team decreased the prevalence of infrequent bowel movements from 72% to 45%, and algorithm adherence increased from 38% to 78%. Education of oncology nurses decreased the prevalence of infrequent bowel movements among patients with cancer from 71% to 60%, and algorithm adherence increased from 0% to 10%. Patients benefit from stool softeners and stimulants when receiving opioids. © The Author(s) 2015.

  4. Who receives home-based perinatal palliative care: experience from Poland.

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    Korzeniewska-Eksterowicz, Aleksandra; Przysło, Łukasz; Kędzierska, Bogna; Stolarska, Małgorzata; Młynarski, Wojciech

    2013-01-01

    The current literature suggests that perinatal palliative care (PPC) programs should be comprehensive, initiated early, and integrative. So far there have been very few publications on the subject of home-based PC of newborns and neonates. Most publications focus on hospital-based care, mainly in the neonatal intensive care units. To describe the neonates and infants who received home-based palliative care in Lodz Region between 2005 and 2011. A retrospective review of medical records. 53 neonates and infants were admitted to a home hospice in Lodz Region between 2005 and 2011. In general, they are a growing group of patients referred to palliative care. Congenital diseases (41%) were the primary diagnoses; out of 53 patients 16 died, 20 were discharged home, and 17 stayed under hospice care until 2011. The most common cause of death (56%) was cardiac insufficiency. Neurological symptoms (72%) and dysphagia (58%) were the most common clinical problems. The majority of children (45%) had a feeding tube inserted and were oxygen dependent (45%); 39 families received psychological care and 31 social supports. For terminally ill neonates and infants, perinatal palliative care is an option which improves the quality of their lives and provides the family with an opportunity to say goodbye.

  5. Who Receives Home-Based Perinatal Palliative Care: Experience from Poland

    Directory of Open Access Journals (Sweden)

    Aleksandra Korzeniewska-Eksterowicz

    2013-01-01

    Full Text Available Context. The current literature suggests that perinatal palliative care (PPC programs should be comprehensive, initiated early, and integrative. So far there have been very few publications on the subject of home-based PC of newborns and neonates. Most publications focus on hospital-based care, mainly in the neonatal intensive care units. Objective. To describe the neonates and infants who received home-based palliative care in Lodz Region between 2005 and 2011. Methods. A retrospective review of medical records. Results. 53 neonates and infants were admitted to a home hospice in Lodz Region between 2005 and 2011. In general, they are a growing group of patients referred to palliative care. Congenital diseases (41% were the primary diagnoses; out of 53 patients 16 died, 20 were discharged home, and 17 stayed under hospice care until 2011. The most common cause of death (56% was cardiac insufficiency. Neurological symptoms (72% and dysphagia (58% were the most common clinical problems. The majority of children (45% had a feeding tube inserted and were oxygen dependent (45%; 39 families received psychological care and 31 social supports. Conclusions. For terminally ill neonates and infants, perinatal palliative care is an option which improves the quality of their lives and provides the family with an opportunity to say goodbye.

  6. Sexual healthcare for cancer patients receiving palliative care: a narrative review.

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    Wang, Katie; Ariello, Krista; Choi, Matthew; Turner, Angela; Wan, Bo Angela; Yee, Caitlin; Rowbottom, Leigha; Macdonald, Rachel; Lam, Henry; Drost, Leah; Chow, Edward

    2017-11-15

    Palliative care aims to improve quality of life (QoL) for patients and families and does so by addressing issues not limited to pathology, but other symptoms that may be debilitating to patient experience and QoL. Despite sexual health being an important aspect of life for many patients, it is often omitted in clinical practice. This review summarizes published primary studies to explore the prevalence and importance of incorporating sexual health in the symptom screening and assessments of palliative patients, to identify current interventions that are implemented to address sexual health issues, and identify the barriers that health care professionals (HCPs) and patients may encounter which may prevent sexual health discussions. A literature review was conducted on Medline and Embase databases using keywords including "cancer", "sexual health", "intimacy", and "palliative care". Eleven papers focusing on the sexual health and intimacy of terminally ill patients in hospice, palliative or terminal care settings were identified for inclusion. Discussions about sexual health, functioning, and intimacy were not common in patient care, despite being a service that both patients and their partners desired. Referrals to sexologists, or discussions with patients and partners about intimacy and sexuality over the course of the disease trajectory were shown to improve QoL as well as alleviate some of the stress of receiving palliative care services. HCPs cited a lack of training, their own life experiences, or discomfort with the topic as barriers to initiating conversations with patients. In conclusion, sexuality and intimacy remain important parts of many people's lives regardless of their health, and should be incorporated into the care of all patients including those in palliative care. There is a need for further research to evaluate different methods or procedures for educating and counselling patients and their partners on sexual health issues. HCPs should have

  7. Determinants of Receiving Palliative Care and Ventilator Withdrawal Among Patients With Prolonged Mechanical Ventilation.

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    Chen, Yang-Ching; Fan, Hsien-Yu; Curtis, J Randall; Lee, Oscar Kuang-Sheng; Liu, Chih-Kuang; Huang, Sheng-Jean

    2017-10-01

    Increasing numbers of patients with prolonged mechanical ventilation generates a tremendous strain on healthcare systems. Patients with prolonged mechanical ventilation suffer from long-term poor quality of life. However, no study has ever explored the willingness to receive palliative care or terminal withdrawal and the factors influencing willingness. Cross-sectional study. Five different hospitals of Taipei City Hospital system. Adult patients with ventilatory support for more than 60 days. None. We identified the family members of 145 consecutive patients with prolonged mechanical ventilation in five hospitals of Taipei City Hospital system and enrolled family members for 106 patients (73.1%). We collected information from patient families' regarding concepts (knowledge, attitude, and experiences) of palliative care, caregiver burden, family function, patient quality of life, and physician-family communications. From the medical record, we obtained duration of hospitalization, consciousness level, disease severity, medical cost, and the presence of do-not-resuscitate orders. The vast majority of family members agreed with the concept of palliative care (90.4%) with 17.3% of the family members agreeing to ventilator withdrawal currently and 67.5% terminally in anticipation of death. Approximately half of the family members regretted having chosen prolonged mechanical ventilation (56.7%). Reduced patient quality of life and increased family understanding of palliative care significantly associated with increased caregiver willingness to endorse palliative care and withdraw life-sustaining agents in anticipation of death. Longer duration of ventilator usage and hospitalization was associated with increased feelings of regret about choosing prolonged mechanical ventilation. During prolonged mechanical ventilation, physicians should thoroughly discuss its benefits and burdens. Families should be given the opportunity to discuss the circumstances under which they

  8. Palliative Care

    Science.gov (United States)

    Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing ... care at the end of life, always includes palliative care. But you may receive palliative care at any ...

  9. Fontan Circulation over Time

    NARCIS (Netherlands)

    Wolff, Djoeke; van Melle, Joost P.; Bartelds, Beatrijs; Ridderbos, Floris-Jan S.; Eshuis, Graziella; van Stratum, Elisabeth B. H. J.; Recinos, Salvador J.; Willemse, Brigitte W. M.; Hillege, Hans; Willems, Tineke P.; Ebels, Tjark; Berger, Rolf M. F.

    2017-01-01

    The unique, unphysiological Fontan circulation is associated with an impaired functional status of the patients that is suggested to deteriorate over time. Unfortunately, previous studies did not integrate both pulmonary and cardiac determinants of functional status. In addition, a comparison with

  10. Palliative care needs in Malawi: Care received by people living with HIV

    Directory of Open Access Journals (Sweden)

    Esmie Mkwinda

    2016-02-01

    Full Text Available Background: Infection with human immunodeficiency virus (HIV has changed from an acute to a chronic illness in the past decade, because of highly active antiretroviral therapy (ART. Malawi’s response to the HIV challenge included provision of ART for people living with HIV or AIDS (PLWHA, which significantly reduced HIV- and AIDS-related mortality. In addition, palliative care for PLWHA was introduced as a strategy that improves the success of ART.Objective: The purpose of the study was to explore the needs of PLWHA concerning care received from primary caregivers and palliative care nurses in Malawi.Methods: A qualitative, explorative design was used and 18 participants were selected purposefully and interviewed individually using a semi-structured interview guide. Data were analysed using NVivo software package version 10.Results: Results revealed that PLWHA needed physical care from the primary caregivers due to severity of illness, integration of healthcare services, and continuity of care and proper care from nurses. They also needed knowledge from nurses in several areas which affected decision-making and needed financial and nutritional support.Conclusion: More could be done in meeting needs of PLWHA to improve their health and survival and assist them to achieve a better quality of life.Keywords: people living with HIV/AIDS, palliative care, palliative care nurse, primary caregiver, support

  11. Perceptions of the care received from Australian palliative care services: A caregiver perspective.

    Science.gov (United States)

    Pidgeon, Tanya M; Johnson, Claire E; Lester, Leanne; Currow, David; Yates, Patsy; Allingham, Samuel F; Bird, Sonia; Eagar, Kathy

    2017-03-30

    Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI 95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI 95% = 0.32, 0.98), and with family support (OR = 0.52; CI 95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI 95% = 0.97, 0.98) and carer payments (OR = 0.99; CI 95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI 95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI 95% = 0.45, 0.81). While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys

  12. A comparative analysis of comprehensive geriatric assessments for nursing home residents receiving palliative care: a systematic review.

    Science.gov (United States)

    Hermans, Kirsten; De Almeida Mello, Johanna; Spruytte, Nele; Cohen, Joachim; Van Audenhove, Chantal; Declercq, Anja

    2014-07-01

    Nursing homes become important locations for palliative care. By means of comprehensive geriatric assessments (CGAs), an evaluation can be made of the different palliative care needs of nursing home residents. This review aims to identify all CGAs that can be used to assess palliative care needs in long-term care settings and that have been validated for nursing home residents receiving palliative care. The CGAs are evaluated in terms of psychometric properties and content comprehensiveness. A systematic literature search in electronic databases MEDLINE, Web of Science, EMBASE, Cochrane, CINAHL, and PsycInfo was conducted for the years 1990 to 2012. Nursing homes. Nursing home residents with palliative care needs. Psychometric data on validity and reliability were extracted from the articles. The content comprehensiveness of the identified CGAs was analyzed, using the 13 domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. A total of 1368 articles were identified. Seven studies met our inclusion criteria, describing 5 different CGAs that have been validated for nursing home residents with palliative care needs. All CGAs demonstrate moderate to high psychometric properties. The interRAI Palliative Care instrument (interRAI PC) covers all domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. The McMaster Quality of Life Scale covers nine domains. All other CGAs cover seven domains or fewer. The interRAI PC and the McMaster Quality of Life Scale are considered to be the most comprehensive CGAs to evaluate the needs and preferences of nursing home residents receiving palliative care. Future research should aim to examine the effectiveness of the identified CGAs and to further validate the CGAs for nursing home residents with palliative care needs. Copyright © 2014 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published

  13. Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis.

    Science.gov (United States)

    Hosie, Annmarie; Agar, Meera; Lobb, Elizabeth; Davidson, Patricia M; Phillips, Jane

    2017-10-01

    Delirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess. To report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units. The Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion. There was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units. Improving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting. Copyright © 2017 Elsevier Ltd. All rights reserved.

  14. Reiki Therapy for Symptom Management in Children Receiving Palliative Care: A Pilot Study.

    Science.gov (United States)

    Thrane, Susan E; Maurer, Scott H; Ren, Dianxu; Danford, Cynthia A; Cohen, Susan M

    2017-05-01

    Pain may be reported in one-half to three-fourths of children with cancer and other terminal conditions and anxiety in about one-third of them. Pharmacologic methods do not always give satisfactory symptom relief. Complementary therapies such as Reiki may help children manage symptoms. This pre-post mixed-methods single group pilot study examined feasibility, acceptability, and the outcomes of pain, anxiety, and relaxation using Reiki therapy with children receiving palliative care. A convenience sample of children ages 7 to 16 and their parents were recruited from a palliative care service. Two 24-minute Reiki sessions were completed at the children's home. Paired t tests or Wilcoxon signed-rank tests were calculated to compare change from pre to post for outcome variables. Significance was set at P Reiki therapy did decrease pain, anxiety, heart, and respiratory rates, but small sample size deterred statistical significance. This preliminary work suggests that complementary methods of treatment such as Reiki may be beneficial to support traditional methods to manage pain and anxiety in children receiving palliative care.

  15. What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care.

    Science.gov (United States)

    Aparicio, María; Centeno, Carlos; Carrasco, José Miguel; Barbosa, Antonio; Arantzamendi, María

    2017-09-06

    Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care. Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined. Three different content categories emerged from the analysis: a) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, attention to the family, empathy, closeness, affection and the therapeutic relationships established (63/77 documents); b) Family recognition of the achievements of the palliative care team (29/77) indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement; c) Messages of support (45/77) related to the need of resources provided. The relational component emerges as an underlying key aspect of family carers' experience with palliative care home service. Family carers show spontaneous gratitude for the professionalism and humanity found in palliative care. The relational component of care emerges as key to achieve a high quality care experience of palliative care homes service, and could be one indicator of quality of palliative care.

  16. Oral health assessment and mouth care for children and young people receiving palliative care. Part two.

    Science.gov (United States)

    Sargeant, S; Chamley, C

    2013-04-01

    This is the second part of a two-part article on oral health assessment and mouth care for children and young people receiving palliative care. This article covers basic oral hygiene and management of oral health problems: oral candidiasis, coated tongue/dirty mouth, dry mouth, hypersalivation, ulceration, painful mouth, stomatitis and mucositis. The article also covers treating patients who are immunocompromised and the need to educate families and carers in the basic principles of oral care, including the importance of preventing cross-infection. Part one outlined oral assessment and discussed the adaptation of the Nottingham Oral Health Assessment Tool (Freer 2000).

  17. [Using electronic medical records to identify outpatients receiving opioids who may benefit from intervention by our palliative care team].

    Science.gov (United States)

    Tsukamoto, Miho; Oki, Yoshie; Aoki, Taro

    2014-03-01

    To achieve optimal management of cancer pain in our outpatients. All cancer patients in our outpatient department who received opioids. A pharmacist and a nurse of the palliative care team used electronic medical records(EMRs)to review cases of outpatients who received opioids. A total of 136 cases were followed-up by our palliative care team based on EMRs from May 2010 to January 2011. Our palliative care team intervened in 50 of these cases (36.8%). Doctors and nurses were given questionnaires to assess the usefulness of this practice, and 60% of the doctors and 65.2% of the nurses, had useful rounds. In this trial, we conclude that the use of EMRs to identify patients for intervention by our palliative care team is beneficial to our medical care system, which improves the quality of life of our patients.

  18. Avoidable and unavoidable visits to the emergency department among patients with advanced cancer receiving outpatient palliative care.

    Science.gov (United States)

    Delgado-Guay, Marvin Omar; Kim, Yu Jung; Shin, Seong Hoon; Chisholm, Gary; Williams, Janet; Allo, Julio; Bruera, Eduardo

    2015-03-01

    Admissions to the emergency department (ED) can be distressing to patients with advanced cancer receiving palliative care. There is limited research about the clinical characteristics of these patients and whether these ED visits can be categorized as avoidable or unavoidable. To determine the frequency of potentially avoidable ED visits (AvEDs) for patients with advanced cancer receiving outpatient palliative care in a large tertiary cancer center, identify the clinical characteristics of the patients receiving palliative care who visited the ED, and analyze the factors associated with AvEDs and unavoidable ED visits (UnAvEDs). We randomly selected 200 advanced cancer patients receiving treatment in the outpatient palliative care clinic of a tertiary cancer center who visited the ED between January 2010 and December 2011. Visits were classified as AvED (if the problem could have been managed in the outpatient clinic or by telephone) or UnAvED. Forty-six (23%) of 200 ED visits were classified as AvED, and 154 (77%) of 200 ED visits were classified as UnAvED. Pain (71/200, 36%) was the most common chief complaint in both groups. Altered mental status, dyspnea, fever, and bleeding were present in the UnAvED group only. Infection, neurologic events, and cancer-related dyspnea were significantly more frequent in the UnAvED group, whereas constipation and running out of pain medications were significantly more frequent in the AvED group (P palliative care clinic (OR 0.24; 95% CI 0.06, 0.88) and the presence of baseline dyspnea (OR 0.46; 95% CI 0.21, 0.99). Nearly one-fourth of ED visits by patients with advanced cancer receiving palliative care were potentially avoidable. Proactive efforts to improve communication and support between scheduled appointments are needed. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  19. A hypnotherapy intervention for the treatment of anxiety in patients with cancer receiving palliative care.

    Science.gov (United States)

    Plaskota, Marek; Lucas, Caroline; Evans, Rosie; Cook, Karen; Pizzoferro, Kathleen; Saini, Treena

    2012-02-01

    This pilot study aimed to assess the benefits of hypnotherapy in the management of anxiety and other symptoms, including depression and sleep disturbance, in palliative care patients with cancer. Eleven hospice patients received four sessions of hypnotherapy and completed the Hospital Anxiety and Depression Scale, the Edmonton Symptom Assessment System, and the Verran and Snyder-Halpern Scale at set time points. Wrist actigraphy also provided an objective assessment of sleep quality. After the second hypnotherapy session there was a statistically significant reduction in mean anxiety and symptom severity, but not in depression or sleep disturbance. After the fourth session there was a statistically significant reduction in all four patient-reported measures but not in actigraphy. These results offer evidence that hypnotherapy can reduce anxiety in palliative care patients, as well as improving sleep and the severity of psychological and physical symptoms. Further studies are needed to explore whether the observed benefits were a direct result of the hypnotherapy and how the intervention could most benefit this patient population.

  20. Palliative care needs in Malawi: Care received by people living with HIV.

    Science.gov (United States)

    Mkwinda, Esmie; Lekalakala-Mokgele, Eucebious

    2016-06-29

    Infection with human immunodeficiency virus (HIV) has changed from an acute to a chronic illness in the past decade, because of highly active antiretroviral therapy (ART). Malawi's response to the HIV challenge included provision of ART for people living with HIV or AIDS (PLWHA), which significantly reduced HIV- and AIDS-related mortality. In addition, palliative care for PLWHA was introduced as a strategy that improves the success of ART. The purpose of the study was to explore the needs of PLWHA concerning care received from primary caregivers and palliative care nurses in Malawi. A qualitative, explorative design was used and 18 participants were selected purposefully and interviewed individually using a semi-structured interview guide. Data were analysed using NVivo software package version 10. Results revealed that PLWHA needed physical care from the primary caregivers due to severity of illness, integration of healthcare services, and continuity of care and proper care from nurses. They also needed knowledge from nurses in several areas which affected decision-making and needed financial and nutritional support. More could be done in meeting needs of PLWHA to improve their health and survival and assist them to achieve a better quality of life.

  1. Physiotherapy programme reduces fatigue in patients with advanced cancer receiving palliative care: randomized controlled trial.

    Science.gov (United States)

    Pyszora, Anna; Budzyński, Jacek; Wójcik, Agnieszka; Prokop, Anna; Krajnik, Małgorzata

    2017-09-01

    Cancer-related fatigue (CRF) is a common and relevant symptom in patients with advanced cancer that significantly decreases their quality of life. The aim of this study was to evaluate the effect of a physiotherapy programme on CRF and other symptoms in patients diagnosed with advanced cancer. The study was designed as a randomized controlled trial. Sixty patients diagnosed with advanced cancer receiving palliative care were randomized into two groups: the treatment group (n = 30) and the control group (n = 30). The therapy took place three times a week for 2 weeks. The 30-min physiotherapy session included active exercises, myofascial release and proprioceptive neuromuscular facilitation (PNF) techniques. The control group did not exercise. The outcomes included Brief Fatigue Inventory (BFI), Edmonton Symptom Assessment Scale (ESAS) and satisfaction scores. The exercise programme caused a significant reduction in fatigue scores (BFI) in terms of severity of fatigue and its impact on daily functioning. In the control group, no significant changes in the BFI were observed. Moreover, the physiotherapy programme improved patients' general well-being and reduced the intensity of coexisting symptoms such as pain, drowsiness, lack of appetite and depression. The analysis of satisfaction scores showed that it was also positively evaluated by patients. The physiotherapy programme, which included active exercises, myofascial release and PNF techniques, had beneficial effects on CRF and other symptoms in patients with advanced cancer who received palliative care. The results of the study suggest that physiotherapy is a safe and effective method of CRF management.

  2. Costs of terminal patients who receive palliative care or usual care in different hospital wards.

    Science.gov (United States)

    Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Berghe, Paul Vanden; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan

    2010-11-01

    In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards.

  3. Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study.

    Science.gov (United States)

    Verberne, Lisa M; Kars, Marijke C; Schouten-van Meeteren, Antoinette Y N; Bosman, Diederik K; Colenbrander, Derk A; Grootenhuis, Martha A; van Delden, Johannes J M

    2017-03-01

    In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a 'good parent', parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life. Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened. What is Known: • In paediatric palliative care, parents are confronted with increasing caregiving demands. • Parenting is often approached from the perspective of stress. What is New: • Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance. • Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life. • Professionals need insight into the parents' aims and tasks from the parental perspective to strengthen parents' resilience.

  4. Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home.

    Science.gov (United States)

    Naoki, Yoko; Matsuda, Yoshinobu; Maeda, Isseki; Kamino, Hideka; Kozaki, Yoko; Tokoro, Akihiro; Maki, Norimasa; Takada, Minoru

    2017-05-02

    Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction. Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively. Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = -0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = -0.563, p = 0.01). Several burden items-including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else-were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions. Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

  5. Anesthetic implications of extended right hepatectomy in a patient with fontan physiology.

    Science.gov (United States)

    Weyker, Paul David; Allen-John Webb, Christopher; Emond, Jean C; Brentjens, Tricia E; Johnston, Taylor A

    2014-04-15

    Patients who have undergone complete cavopulmonary anastomosis, the Fontan procedure, have passive venous blood flow from the superior and inferior vena cava into the pulmonary circulation without passing through the right ventricle. Although this procedure is an effective means of palliation, the resultant chronically increased central venous pressure, leads to several types of hepatic dysfunction including chronic congestion, cardiac cirrhosis, and even hepatocellular carcinoma. In this case report, we describe a patient with Fontan-associated hepatocellular carcinoma who successfully underwent a right hepatectomy.

  6. A survey of patients' experience of pain and other symptoms while receiving care from palliative care services.

    Science.gov (United States)

    Pidgeon, Tanya; Johnson, Claire E; Currow, David; Yates, Patsy; Banfield, Maree; Lester, Leanne; Allingham, Sam F; Bird, Sonia; Eagar, Kathy

    2016-09-01

    In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings. To explore patients' levels of pain and other symptoms while receiving care from PCSs. PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale. Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe 'other symptoms', 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients. Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as 'severe'. Our findings highlight the importance of routine, comprehensive assessment of patients' concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  7. Bridging the communication gap between oncologists and patients receiving palliative therapies.

    Science.gov (United States)

    Ferguson, Michelle; Rodrigues, George

    2013-10-01

    The discussion of prognosis is a regular component of oncology practice. When the prognosis is poor, the disclosure can be difficult for both patients and physicians alike. In a recent article by Chen et al., stage IIIB and IV lung cancer patients were surveyed on their beliefs about radiotherapy they were receiving. A significant proportion of patients expressed the belief that radiotherapy, which they were receiving purely with palliative intent, was likely to cure their cancer. Misunderstanding the goals of treatment can have important consequences with respect to informed decision-making and end-of-life planning. There are likely many factors contributing to this misunderstanding, both from the perspective of the patient as well as the physician. Discussing incurable disease in a clear, honest manner without taking away hope can be very challenging for the physician. Even when done well, patients often do not hear or completely understand the message. Focusing on active treatment may in fact perpetuate the patient's belief that they can be cured. In this article, some of the factors contributing to inaccurate beliefs are discussed. Awareness of the issue, and approaching the patient in a somewhat different manner when disclosing prognosis, may help patients to develop more appropriate beliefs about their disease and treatment. Ultimately the goal is for patients to make decisions that align with their beliefs and values, which can only be done if they have clear understanding of prognosis.

  8. Psychosocial needs and interventions for heart failure patients and families receiving palliative care support: a systematic review.

    Science.gov (United States)

    Cagle, John G; Bunting, Morgan; Kelemen, Anne; Lee, Joonyup; Terry, Dorothy; Harris, Ryan

    2017-09-01

    Although diseases of the heart are the leading cause of death in the USA, palliative care research has largely focused on populations of cancer patients. However, a diagnosis of heart failure differs substantially than that of cancer. They differ in terms of signs and symptoms, disease trajectories, treatment options, stigma, and prognosis. Additionally, the populations affected by these differing illnesses are also unique in a number of fundamental ways. Based on these differences, it is reasonable to hypothesize that palliative care patients with heart failure, and their families, have a distinct set of psychosocial needs. The purpose of this review is to describe the psychosocial needs of palliative care heart failure patients, and their families, as well as the interventions that address those needs. Six electronic databases were searched in June 2016 resulting in 962 identified abstracts. After removal of 388 duplicates, 574 abstracts were screened based on the following criteria: (1) available in English, (2) peer-reviewed, (3) empirical data reported, (4) patient receiving palliative or hospice care, and (5) measured psychosocial needs of heart failure patients and/or their family caregivers. After screening 574 abstracts and conducting a full-text review of 150 articles, a total of 17 studies were identified in our review. Only three intervention studies were identified, two of which evaluated the impact of palliative care over usual care. The remaining study was a clinical trial of a psycho-educational support intervention, which failed to demonstrate beneficial outcomes. Heart failure patients and their family caregivers receiving palliative or hospice care have unique psychosocial needs that are largely unexamined by previous research. The need for further research is discussed.

  9. Thromboembolic Complications in Fontan Patients

    DEFF Research Database (Denmark)

    Idorn, L; Jensen, A S; Juul, K

    2013-01-01

    After the Fontan procedure, patients face an increased risk for thromboembolic events (TE). The etiology for this increased thrombogenecity is incompletely understood. This study aimed to determine the prevalence of TE in Danish Fontan patients and to bring new insights into the etiology of TE...... patients and plasma was analyzed in 76 patients for biomarkers reflecting endothelial-, glycocalyx-, platelet-, and fibrinolysis function (histone-complexed DNA fragments, Protein C, soluble CD40 ligand, soluble thrombomodulin, syndecan-1, tissue-type plasminogen activator). The results were compared...

  10. Can endurance training improve physical capacity and quality of life in young Fontan patients?

    Science.gov (United States)

    Hedlund, Eva R; Lundell, Bo; Söderström, Liselott; Sjöberg, Gunnar

    2017-12-14

    Children after Fontan palliation have reduced exercise capacity and quality of life. Our aim was to study whether endurance training could improve physical capacity and quality of life in Fontan patients. Fontan patients (n=30) and healthy age- and gender-matched control subjects (n=25) performed a 6-minute walk test at submaximal capacity and a maximal cycle ergometer test. Quality of life was assessed with Pediatric Quality of Life Inventory Version 4.0 questionnaires for children and parents. All tests were repeated after a 12-week endurance training programme and after 1 year. Patients had decreased submaximal and maximal exercise capacity (maximal oxygen uptake 35.0±5.1 ml/minute per·kg versus 43.7±8.4 ml/minute·per·kg, ptraining, patients improved their submaximal exercise capacity in a 6-minute walk test (from 590.7±65.5 m to 611.8±70.9 m, ptraining. At follow-up, improvement of maximal exercise capacity was sustained. We believe that an individualised endurance training programme for Fontan patients improves submaximal exercise capacity and quality of life in Fontan patients and the effect on quality of life appears to be long-lasting.

  11. Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study

    NARCIS (Netherlands)

    Verberne, Lisa M.; Kars, Marijke C.; Schouten-van Meeteren, Antoinette Y. N.; Bosman, Diederik K.; Colenbrander, Derk A.; Grootenhuis, Martha A.; van Delden, Johannes J. M.

    2017-01-01

    In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC

  12. Aims and tasks in parental caregiving for children receiving palliative care at home : a qualitative study

    NARCIS (Netherlands)

    Verberne, Lisa M; Kars, Marijke C|info:eu-repo/dai/nl/28486711X; Schouten-van Meeteren, Antoinette Y N; Bosman, Diederik K; Colenbrander, Derk A; Grootenhuis, Martha A; van Delden, Johannes J M|info:eu-repo/dai/nl/086541331

    In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC

  13. Opinions about the new law on end-of-life issues in a sample of french patients receiving palliative care.

    Science.gov (United States)

    Boulanger, Augustin; Chabal, Théo; Fichaux, Marie; Destandau, Mireille; La Piana, Jean Marc; Auquier, Pascal; Baumstarck, Karine; Salas, Sébastien

    2017-01-21

    In February 2nd 2016, the French government enacted the Claeys-Leonetti law that forbade euthanasia and established the right to deep and continuous sedation for end-of-life patients. Moreover, the law also obliges clinicians to abide by any advance directives regarding treatment and investigation, except in cases where they are "obviously inappropriate" in a given medical situation, or in cases of emergency, in order to allow medical staff to take time to assess the patient's situation. Artificial feeding and hydration are considered as treatment. The aim of this report is to investigate individuals receiving palliative care about their opinion about euthanasia, about advance directives, about the right to deep and continuous sedation, and the right to stopping artificial feeding and hydration. The study was an opinion survey conducted among patients treated in two different palliative care institutions: a palliative care unit at the University Hospital (Timone, Marseille, France) and a non-profit association palliative care home ("La Maison", Gardanne, France). Face-to-face interviews were performed by two investigators. The survey included sociodemographics, clinical data, and opinions about euthanasia, deep and continuous sedation, stopping artificial feeding and hydration, and advance directives. Forty patients were interviewed. The mean age was 59.8 years (standard deviation 12). Fifty three percent reported opposition to legalized euthanasia. Eighty three percent were in favour of the right to deep and continuous sedation in patients with refractory pain, 75% when it concerns a patient unable to express their wishes, and 68% when the patient decides to stop vital treatment. Fifty eight percent reported that artificial nutrition and hydration should be considered as care. Fifty eight percent of the patients interviewed would like to see doctors follow the express wishes contained in advance care directives and 53% that advance directives should be subject to

  14. Significances and meanings of the musical identity of patients and relatives receiving oncological palliative care

    Directory of Open Access Journals (Sweden)

    Vladimir Araujo de Silva

    2014-03-01

    Full Text Available This phenomenological study was structured on Heidegger’s theoretical-philosophical framework, with the objective of unveiling the significances and meanings of the musical identity of patients and relatives under oncological palliative care. Individual interviews were performed with 12 clients (seven patients and five relatives staying at the support residence of the Maringa Female Network Against Cancer. A total of eight musical meetings were performed between January and February of 2011. I understood that the musical identity of the evidenced beings refers to the religious and country music styles, that their significances and meanings are connected to their spirituality and the significant events of their historicity, and that their mood and reflection intermediated by music can influence their musical choice. I gave evidence to the need to consider the music identity and empowerment in musical choices, which carries existential, social, cultural, spiritual and family aspects as qualifying elements of nursing in palliative care. Descriptors: Nursing Care; Oncology Nursing; Music; Music Therapy; Palliative Care.

  15. Effects of melatonin on physical fatigue and other symptoms in patients with advanced cancer receiving palliative care

    DEFF Research Database (Denmark)

    Lund Rasmussen, Charlotte; Klee Olsen, Marc; Thit Johnsen, Anna

    2015-01-01

    a histologically confirmed stage IV cancer (TNM Classification), and who reported feeling significantly tired were recruited from the palliative care unit at the study institution. The study was a double-blind, randomized, placebo-controlled crossover trial. Patients received 1 week of melatonin at a dose of 20 mg...... of Cancer Quality of Life Questionnaire. Physical fatigue from the MFI-20 was the primary outcome. The primary analysis was a complete complier analysis (ie, it included only those patients who had consumed at least 5 capsules per week and who had answered the MFI-20 on days 1, 7, 10, and 17). Sensitivity...

  16. Family members of deceased palliative care patients receiving bereavement anniversary cards: a survey on the recipient's reactions and opinions.

    Science.gov (United States)

    Goebel, Swantje; Mai, Sandra Stephanie; Gerlach, Christina; Windschmitt, Ulrike; Feldmann, Karl-Heinz; Weber, Martin

    2017-04-19

    Bereavement support is part of palliative care. Sending out bereavement anniversary cards is one intervention of follow-up support for the bereaved. This study evaluated the suitability of bereavement anniversary cards as an appropriate method in bereavement care. A questionnaire was sent to each card recipient since the starting point of this practice (October 2014-June 2015). Data was analyzed descriptively. 24 of 68 deliverable questionnaires were returned (response rate 35%). 22 out of 24 recipients felt pleased receiving the card. No participant felt annoyed on receiving the bereavement anniversary card; every participant agreed to at least one positive reaction (i.e. pleased, grateful or consoled). The participants' reactions and opinions about receiving the anniversary card were decidedly positive and indicate the continuation of this practice. Those few less pleased reactions may be related to timing and the first anniversary of the patients' death and therefore an expression of grief rather than a dissatisfaction with bereavement anniversary cards, as such.

  17. Pattern of palliative care, pain management and referral trends in patients receiving radiotherapy at a tertiary cancer center

    Directory of Open Access Journals (Sweden)

    Kuldeep Sharma

    2009-01-01

    Full Text Available Background: Pain is a common primary symptom of advanced cancer and metastatic disease, occurring in 50-75% of all patients. Although palliative care and pain management are essential components in oncology practice, studies show that these areas are often inadequately addressed. Materials and Methods: We randomly selected 152 patients receiving palliative radiotherapy (PRT from October 2006 to August 2008, excluding metastatic bone lesions. Patients′ records were studied retrospectively. Results: A median follow-up of 21 weeks was available for 119 males and 33 females with a median age of 55 years. Maximum (60% patients were of head and neck cancers followed by esophagus (14%, lung (10% and others. Dysphagia, growth/ulcer and pain were the chief indications for PRT. Pain was present in 93 (61% cases out of which, 56 (60% were referred to pain clinic. All except one consulted pain clinic with a median pain score of 8 (0-10 point scale. Fifty-three of these 56 patients (96% received opioid-based treatment with adequate pain relief in 33% cases and loss of follow-up in 40% cases. Only five (3% cases were referred to a hospice. Twenty-two (14% cases were considered for radical treatment following excellent response to PRT. Conclusion: In this selective sample, the standard of analgesic treatment was found to be satisfactory. However, there is a lot of scope for improvement regarding referral to pain clinic and later to the hospice. Patients′ follow-up needs to be improved along with future studies evaluating those patients who were considered for further RT till radical dose. Programs to change the patients′ attitude towards palliative care, physicians′ (residents′ training to improve communication skills, and institutional policies may be promising strategies.

  18. The Direct Effect of Flexible Walls on Fontan Connection Fluid Dynamics

    Science.gov (United States)

    Tree, Mike; Fagan, Kiley; Yoganathan, Ajit

    2014-11-01

    The current standard treatment for sufferers of congenital heart defects is the palliative Fontan procedure. The Fontan procedure results in an anastomosis of major veins directly to the branched pulmonary arteries bypassing the dysfunctional ventricle. This total cavopulmonary connection (TCPC) extends life past birth, but Fontan patients still suffer long-term complications like decreased exercise capacity, protein-losing enteropathy, and pulmonary arteriovenous malformations (PAVM). These complications have direct ties to fluid dynamics within the connection. Previous experimental and computation studies of Fontan connection fluid dynamics employed rigid vessel models. More recent studies utilize flexible models, but a direct comparison of the fundamental fluid dynamics between rigid and flexible vessels only exists for a computational model, without a direct experimental validation. Thus, this study was a direct comparison of fluid dynamics within a rigid and two compliant idealized TCPCs. 2D particle image velocimetry measurements were collected at the connection center plane. Results include power loss, hepatic flow distribution, fluid shear stress, and flow structure recognition. The effect of flexible walls on these values and clinical impact will be discussed.

  19. Traumatic brain injury and palliative care: a retrospective analysis of 49 patients receiving palliative care during 2013–2016 in Turkey

    National Research Council Canada - National Science Library

    Kadriye Kahveci Metin Din?er Cihan Doger Ayse Karhan Yaric

    2017-01-01

    ... and their families.The need for palliative care in TBI and the limits of the care requirement are not clear.The aim of this study was to investigate the length of stay in the palliative care center(PCC...

  20. Timing of palliative care team referrals for inpatients receiving rapid response services: A retrospective pilot study in a US hospital.

    Science.gov (United States)

    Williams, M; Cardona-Morrell, M; Stevens, P; Bey, J; Smith Glasgow, M E

    2017-10-01

    Research indicates up to one-third of rapid response team calls relate to end-of-life symptoms. The CriSTAL criteria were developed as a screening tool to identify high risk of death within three months. The primary purpose of this pilot study was to investigate the timing of palliative care referrals in patients receiving rapid response team services, and patients' CriSTAL criteria score on admission. The potential feasibility of using the CriSTAL tool to stimulate earlier Palliative Care Team (PCT) referral served as an underlying goal, and investigation of a relationship between specific CriSTAL criteria and the prediction of in-hospital death was a secondary objective. A retrospective chart review of rapid response calls made in 2015 was used to identify patient risk of death on admission based on the CriSTAL criteria. The presence and timing of PCT referral as well as patient survival status to hospital discharge were documented for comparison. A sample of 183 charts from 584 inpatients involved in over 600 RRT events recorded in 2015. The study was undertaken in a 676-bed teaching hospital in the Midwestern U.S. Ninety-one patients died during the hospital stay while 92 patients from the 493 individuals who survived were randomly selected for full analysis. Applying CriSTAL criteria to the 141 individuals aged 50 years or older indicated that frailty (OR=1.43, 95%CI 1.08-1.89, p=0.012), being a male (OR=3.14; 95%CI 1.40-7.05, p=0.006), and the presence of two or more comorbidities (OR=3.71, 95%CI 1.67-8.24, p=0.001) were the most significant predictors of in-hospital death after adjusting for age. A CriSTAL score of 6 was the optimal cut-off for high-risk of in-hospital death. Palliative care consultations within the high-risk population occurred for 45.2% of the deceased and 40.4% of the survivors. Consultation often occurred within two days of the RRT event and many patients (46.8%) died within one day of the consultation. A positive relationship was found

  1. Sleep-wake difficulties in community-dwelling cancer patients receiving palliative care: subjective and objective assessment.

    Science.gov (United States)

    Bernatchez, Marie Solange; Savard, Josée; Savard, Marie-Hélène; Aubin, Michèle; Ivers, Hans

    2017-09-21

    Prevalence rates of sleep difficulties in advanced cancer patients have varied widely across studies (12 to 96%), and none of these employed a diagnostic interview to distinguish different types of sleep-wake disorders. Moreover, very limited information is available on subjective and objective sleep parameters in this population. Our study was conducted in palliative cancer patients and aimed to assess rates of sleep-wake disorders and subsyndromal symptoms and to document subjective and objective sleep-wake parameters across various types of sleep-wake difficulties. The sample was composed of 51 community-dwelling cancer patients receiving palliative care and having an Eastern Cooperative Oncology Group score of 2 or 3. Relevant sections of the Duke Interview for Sleep Disorders were administered over the phone. An actigraphic recording and a daily sleep diary were completed for 7 consecutive days. Overall, 68.6% of the sample had at least one type of sleep-wake difficulty (disorder or symptoms): 31.4% had insomnia and 29.4% had hypersomnolence as their main sleep-wake problem. Participants with insomnia as their main sleep difficulty had greater disruptions of subjective sleep parameters, while objectively-assessed sleep was more disrupted in patients with hypersomnolence comorbid with another sleep-wake difficulty. Significance of the Results: The high rates of sleep-wake difficulties found in this study indicate a need to screen more systematically for sleep-wake disorders, including insomnia and hypersomnolence, in both palliative care research and clinical practice, and to develop effective nonpharmacological interventions specifically adapted to this population.

  2. Prevalence and characterization of fibrosis in surveillance liver biopsies of patients with Fontan circulation.

    Science.gov (United States)

    Surrey, Lea F; Russo, Pierre; Rychik, Jack; Goldberg, David J; Dodds, Kathryn; O'Byrne, Michael L; Glatz, Andrew C; Rand, Elizabeth B; Lin, Henry C

    2016-11-01

    The Fontan operation is a widely used palliative procedure in patients with single-ventricle anatomy that results in liver injury. As timely identification of liver fibrosis may result in management changes to Fontan patients, the aim of our study was to identify clinically meaningful semi quantitative/quantitative pathologic parameters for biopsy assessment. We performed a retrospective review of 74 liver needle biopsies from Fontan patients. Fibrosis was assessed using quantitative % collagen deposition by Sirius red image analysis, METAVIR, congestive hepatic fibrosis score, sinusoidal fibrosis score, and sinusoidal dilation score. Contemporaneous laboratory, hemodynamic, and ultrasound data were collected. Centrilobular and peri sinusoidal fibrosis was observed in all cases, with 39.2% high grade. Portal fibrosis was observed in 93.2%, with 36.2% high-grade (METAVIR F3-F4). Cirrhosis was observed in 5.4%. % Collagen deposition was increased over control tissue (P liver function consistently associated with multiple high-grade fibrosis scores (METAVIR P = .046, sinusoidal fibrosis P = .018). Abnormal liver echotexture on ultrasound was associated with high-grade congestive hepatic fibrosis score (P = .03). Pathologic gradings and %CD correlated with each other (r = 0.48-0.8, P fibrosis in Fontan patients in our study is universally present, appears to be time dependent, and correlates with few laboratory measurements of liver function. Careful assessment of needle liver biopsies lends a more meaningful measure of liver fibrosis in the Fontan patient than clinical and laboratory data, allowing for appropriate changes to patient management. Copyright © 2016 Elsevier Inc. All rights reserved.

  3. Hepatocellular carcinoma in the adult Fontan patient.

    Science.gov (United States)

    Conroy, Michael R; Moe, Tabitha G

    2017-03-01

    In this study, we describe the case of a 36-year-old woman who was diagnosed with hepatocellular carcinoma on a background of Fontan procedure for tricuspid atresia. She had worsening heart failure in the months before presentation, and early investigations noted derangement in liver enzymes and hepatomegaly. Liver biopsy confirmed a hepatocellular carcinoma. Hepatocellular carcinoma is a rare but recognised consequence of cardiac cirrhosis in Fontan patients.

  4. Pregabalin prescription for terminally ill cancer patients receiving specialist palliative care in an acute hospital.

    Science.gov (United States)

    Yajima, Ryo; Matsumoto, Kazuaki; Ise, Yuya; Suzuki, Norihito; Yokoyama, Yuta; Kizu, Junko; Katayama, Shiro

    2016-01-01

    Pregabalin is recommended as an adjuvant analgesic for neuropathic cancer-related pain, and may be taken at all steps of the World Health Organization analgesic ladder. However, unlike opioids, pregabalin treatments are limited to an oral administration route. If patients have oral feeding difficulties, it is not possible to administer any drug as an adjuvant analgesic for neuropathic cancer-related pain. Therefore, the aim of the present study was to clarify the problems of pain control after pregabalin discontinuation in terminally ill cancer patients. Our subjects comprised cancer patients who died during their hospital stay and were referred between April 2013 and October 2015 to the palliative care team of the 899-bed Cancer Hospital at the Nippon Medical School Hospital in Japan. The medical records of each patient were retrospectively reviewed, and patient characteristics were recorded. We obtained data on 183 patients during the study period. Thirty-eight (20.8 %) patients were treated with pregabalin. Thirty-three (86.8 %) out of 38 patients were prescribed pregabalin for neuropathic cancer-related pain. The incidence of bony metastases was significantly higher in patients administered pregabalin than in those not taking the drug (non-pregabalin group 32.4 % vs pregabalin group 57.9 %). Pregabalin was ultimately discontinued in all patients, with the main reason being oral feeding difficulties (81.6 %). After the discontinuation of pregabalin, the amount of opioid drugs administered was increased in 56.5 % of patients with oral feeding difficulties. Our results demonstrated that the amount of opioid drugs administered was increased in more than 50 % of patients following the discontinuation of pregabalin, and was repeatedly increased for some patients. A new administration route is required for cancer patients unable to take oral medication. UMIN000022507. May 28, 2016 retrospectively registered.

  5. Palliative or Comfort Care

    Science.gov (United States)

    ... emotional distress. A special type of care called palliative care is available to help you get relief from these and other symptoms. You can receive palliative care at any stage of your serious illness, including ...

  6. Endocardial pacing after Fontan-type procedures.

    Science.gov (United States)

    Hansky, Bert; Blanz, Ute; Peuster, Matthias; Gueldner, Holger; Sandica, Eugen; Crespo-Martinez, Eugenia; Mathies, Wolfgang; Meyer, Hans; Koerfer, Reiner

    2005-02-01

    Sinus node dysfunction is a frequent complication of Fontan-type procedure. Epicardial pacing is considered as the standard treatment for these patients. We evaluated an endocardial approach in seven patients using a 4.1 French bipolar lumenless lead (SelectSecure) that is positioned through a steerable guiding catheter. Either a purely transvenous or an open transatrial approach can be used for lead placement. The smallest child weighed 12 kg. Individual anatomy was assessed preimplantation using magnetic resonance imaging and injection of radiographic contrast agent through the guiding catheter. A pullback pressure recording was used to confirm unimpaired blood flow into the pulmonary artery. Five of our seven patients underwent de novo transvenous atrial lead implantation for AAIR pacing. In the remaining two patients, both atrial and ventricular leads were inserted. One patient with an intraatrial tunnel underwent transvenous-lead placement. The remaining patient with an extracardiac conduit received atrial and ventricular leads implanted through a guiding catheter inserted through an atriotomy. The postoperative management included short- or long-term oral anticoagulation. Transvenous endocardial lead implantation avoids the problem of increasing capture thresholds typically observed with epicardial leads. Due to its high tensile strength and lumenless design, the isodiametric lead is expected to remain extractable for an extended period of time.

  7. Sequential Assessments of the Eastern Cooperative Oncology Group Performance Scale Enhance Prognostic Value in Patients With Terminally Ill Cancer Receiving Palliative Care.

    Science.gov (United States)

    Peng, Meng-Ting; Liu, Chien-Ting; Hung, Yu-Shin; Kao, Chen-Yi; Chang, Pei-Hung; Yeh, Kun-Yun; Wang, Hung-Ming; Lin, Yung-Chang; Chou, Wen-Chi

    2016-06-01

    This study aimed to assess the utility of the Eastern Cooperative Oncology Group (ECOG) performance scale assessments on days 1 and 8 of palliative care, as well as scale change between these assessments, as prognostic tools for patients with terminally ill cancer. A total of 2392 patients with terminally ill cancer who received palliative care between January 2006 and December 2011 at a single medical center were analyzed. Our study showed that the ECOG scale is a useful prognostic tool to predict life expectancy in patients with terminally ill cancer. The ECOG scale assessments at different time points under palliative care were independent predictors for overall survival. The combined ECOG scale assessments on days 1 and 8 predicted survival more precisely than using day 1 ECOG scale assessment alone. © The Author(s) 2014.

  8. The experience and expectations of terminally ill patients receiving music therapy in the palliative setting: a systematic review.

    Science.gov (United States)

    Qi He Mabel, Leow; Drury, Vicki Blair; Hong, Poon Wing

    2010-01-01

    Music therapy is a popular form of complementary therapy used in the hospice in Western countries, as people who are terminally ill have several needs arising directly from the disease process. In the area of palliative care, no systematic review has been conducted on the experience of patients using music therapy from the qualitative perspective. Hence, a synthesized summary of the experience of music therapy is presented. The aim of this review was to critically analyse and synthesize existing evidence related to terminally ill patients' experiences of using music therapy in the palliative setting. This review considered quantitative descriptive studies, and qualitative research with adult participants who were terminally ill receiving palliative care in a hospital, an in-patient hospice, a nursing home, or their own homes, regardless of their diagnosis who had undergone at least one music therapy session with a trained music therapist and were not cognitively impaired. Healthcare workers who have witnessed patients participating in music therapy were also included in the review. Only published primary research studies were included in the review. This review was limited to papers in English. A three-step search strategy was undertaken. First, an initial limited search of CINAHL and MEDLINE was done. Second, an extensive search using all identified keywords and index terms across all included databases was done. Finally, a hand search of the reference lists and bibliographies of included articles was conducted METHODOLOGICAL QUALITY: Papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardised critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (QARI) for qualitative papers, and Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) for quantitative descriptive papers

  9. Palliative Care: Video Tells a Mother's Story of Caring Support

    Science.gov (United States)

    ... Does my child have to be in hospice care to receive palliative care? No, your child can receive palliative care in ... at any time during their illness. How can palliative care help my child and our family? Palliative care ...

  10. Strain experienced by caregivers of dementia patients receiving palliative care: findings from the Palliative Excellence in Alzheimer Care Efforts (PEACE) Program.

    Science.gov (United States)

    Diwan, Sadhna; Hougham, Gavin W; Sachs, Greg A

    2004-12-01

    Programs that provide palliative care to individuals with dementia, which is a progressive terminal illness, are likely to encounter different issues (e.g., management of problem behaviors, caregiver strain extending over years) from those typically addressed by hospice programs. Little research is available on palliative care for individuals with dementia who live in the community. This study examines predictors of types of strain experienced by caregivers of community-dwelling patients with dementia enrolled in a unique demonstration program titled Palliative Excellence in Alzheimer Care Efforts (PEACE), which moved palliative care "upstream," integrating palliative care into the primary care of patients with dementia. Data were collected through structured, face-to-face interviews with 150 community-dwelling, predominantly African American patient-caregiver dyads who were enrolled in the PEACE program. Established measures, including the Caregiver Strain Index, the Revised Memory and Behavior Problems Checklist, and the Katz Index of Activities of Daily Living, were used in addition to other measures assessing caregiver, patient, and situational characteristics. Factor analysis of the Caregiver Strain Index revealed three dimensions of strain (role, personal, and emotional) related to caregiving. Using a stress process model, regression analyses examined stressors and resources related to patient, caregiver, and support system characteristics in predicting these three dimensions of strain among caregivers. Patient problem behaviors predicted all types of caregiver strain. Perceived lack of support from the health care team predicted personal and emotional strain, whereas higher income, surprisingly, predicted role strain. Patient functional limitations predicted personal and role strain. Findings suggest that effective palliative care programs for patients with dementia need to understand and address the various sources and types of caregiver strain; provide

  11. Medical image of the week: Fontan procedure

    Directory of Open Access Journals (Sweden)

    Tumanik M

    2013-08-01

    Full Text Available A 25-year-old man with a history of transposition of the great vessels (L-TGA was admitted for persistent hemoptysis. He had a history of a double inlet left ventricle, pulmonary hypertension and was postoperative for a Fontan procedure completed at age of 2. No anatomical source for the hemoptysis was found. A thoracic CT showed the Fontan anatomy: SVC connected to the pulmonary artery as per the Glenn connection (IVC drained to right pulmonary artery through the Fontan pathway and a single ventricle and atrium (Figure 1. SVC venography showed the SVC connected to the pulmonary artery (Figure 2. The hemoptysis resolved after started sidenafil and bosentan for pulmonary hypertension.

  12. Assessment of status of patients receiving palliative home care and services provided in a rural area-Kerala, India

    OpenAIRE

    Jayakrishnan Thayyil; Jeeja Mathummal Cherumanalil

    2012-01-01

    Context: For the first time in India, a Pain and Palliative Care policy to guide the community-based home care initiatives was declared by the Government of Kerala state. In Kerala, majority of the panchayats (local self-governments) are now conducting home-based palliative care as part of primary health care. National focus domain areas in palliative care research are structure and process, the physical aspects, and also the social aspects of care. Aims: The study was conducted to assess the...

  13. Intensity and correlates of multidimensional problems in HIV patients receiving integrated palliative care in sub-Saharan Africa.

    Science.gov (United States)

    Harding, Richard; Selman, Lucy; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gao, Wei; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Anthony; Mpanga Sebuyira, Lydia; Ikin, Barbara; Higginson, Irene J

    2012-12-01

    Despite global clinical guidance that HIV patients should have multidimensional care integrated into their management, there has been very limited data to guide practice since the advent of treatment. This study aimed to determine the three-day period intensity of problems (physical, psychological, social and spiritual) among HIV patients receiving integrated palliative care in sub-Saharan Africa, and to identify associations with problem severity. A sample of 230 consecutive adult patients attending five sites in South Africa and Uganda gave self-report data using a well-validated outcome scale. Multivariable regression models determine the association of patient characteristics with intensity of three scale factors. The most burdensome problems were (in descending order) pain, worry, symptoms, and adequate information to plan for the future. Interestingly, CD4 counts were available on file for only 59.1% of patients. In multivariate analyses, being cared for at home was associated with poorer physical/psychological factor score (B=-0.192, 95% CI -2.566 -0.464, p=0.005), while being on ART was associated with better factor score (B=0.187, 95% CI=0.424 23.80, p=0.005). For the existential/spiritual factor, being cared for at home was associated with a worse factor score (B=-0.306, 95% CI -2.776 -1.128, pfactors. These self-report data reveal a high burden of both physical and psychological problems, and that communication from professionals is insufficient. Patients receiving home care may require additional support to enhance wellbeing, and treatment may not affect interpersonal and existential/spiritual wellbeing.

  14. Enhancing provider knowledge and patient screening for palliative care needs in chronic multimorbid patients receiving home-based primary care.

    Science.gov (United States)

    Wharton, Tracy; Manu, Erika; Vitale, Caroline A

    2015-02-01

    This article describes a pilot model to increase palliative care (PC) knowledge and collaboration among providers and to systematically identify chronic multimorbid home care patients who would benefit from focused discussion of potential PC needs. Thirty health care providers from a home-based primary care team attended interdisciplinary trainings. The Palliative Performance Scale (PPS) tool was used to trigger discussions of potential palliative needs at team rounds for patients who scored below a cutoff point on the tool. Palliative Performance Scale implementation added little burden on nurses and triggered a discussion in 51 flagged patients. The tool successfully identified 75% of patients who died or were discharged. Screening was systematic and consistent and resulted in targeted discussions about PC needs without generating additional burden on our PC consult service. This model shows promise for enhancing collaborative patient care and access to PC. © The Author(s) 2013.

  15. GP and nurses' perceptions of how after hours care for people receiving palliative care at home could be improved: a mixed methods study

    Directory of Open Access Journals (Sweden)

    Miles Gail

    2009-09-01

    Full Text Available Abstract Background Primary health care providers play a dominant role in the provision of palliative care (PC in Australia but many gaps in after hours service remain. In some rural areas only 19% of people receiving palliative care achieve their goal of dying at home. This study, which builds on an earlier qualitative phase of the project, investigates the gaps in care from the perspective of general practitioners (GPs and PC nurses. Methods Questionnaires, developed from the outcomes of the earlier phase, and containing both structured and open ended questions, were distributed through Divisions of General Practice (1 urban, 1 rural, 1 mixed to GPs (n = 524 and through a special interest group to palliative care nurses (n = 122 in both rural and urban areas. Results Questionnaires were returned by 114 GPs (22% and 52 nurses (43%. The majority of GPs were associated with a practice which provided some after hours services but PC was not a strong focus for most. This was reflected in low levels of PC training, limited awareness of the existence of after hours triage services in their area, and of the availability of Enhanced Primary Care (EPC Medicare items for care planning for palliative patients. However, more than half of both nurses and GPs were aware of accessible PC resources. Factors such as poor communication and limited availability of after hours services were identified the as most likely to impact negatively on service provision. Strategies considered most likely to improve after hours services were individual patient protocols, palliative care trained respite carers and regular multidisciplinary meetings that included the GP. Conclusion While some of the identified gaps can only be met by long term funding and policy change, educational tools for use in training programs in PC for health professionals, which focus on the utilisation of EPC Medicare items in palliative care planning, the development of advance care plans and good

  16. Prognostic significance of a systemic inflammatory response in patients receiving first-line palliative chemotherapy for recurred or metastatic gastric cancer

    Directory of Open Access Journals (Sweden)

    Hwang Jun-Eul

    2011-11-01

    Full Text Available Abstract Background There is increasing evidence that the presence of an ongoing systemic inflammatory response is associated with poor prognosis in patients with advanced cancers. We evaluated the relationships between clinical status, laboratory factors and progression free survival (PFS, and overall survival (OS in patients with recurrent or metastatic gastric cancer receiving first-line palliative chemotherapy. Methods We reviewed 402 patients with advanced gastric adenocarcinoma who received first-line palliative chemotherapy from June 2004 and December 2009. Various chemotherapy regimens were used. Eastern Cooperative Oncology Group performance status (ECOG PS, C-reactive protein (CRP, albumin, Glasgow prognostic score (GPS, and clinical factors were recorded immediately prior to first-line chemotherapy. Patients with both an elevated CRP (>1.0 mg/dL and hypoalbuminemia ( Results According to multivariate analysis, the factors independently associated with PFS were ECOG PS (HR 1.37, 95% CI 1.02-1.84, P = 0.035, bone metastasis (HR 1.74, 95% CI 1.14-2.65, P = 0.009, and CRP elevation (HR 1.64, 95% CI 1.28-2.09, P = 0.001. The factors independently associated with OS were ECOG PS (HR 1.33, 95% CI 1.01-1.76, P = 0.037, bone metastasis (HR 1.61, 95% CI 1.08-2.39, P = 0.017, and GPS ≥ 1 (HR 1.76, 95% CI 1.41-2.19, P = 0.001. Conclusions The results of this study showed that the presence of a systemic inflammatory response as evidenced by the CRP, GPS was significantly associated with shorter PFS and OS in patients with recurrent or metastatic gastric cancer receiving first-line palliative chemotherapy. Bone metastasis and GPS were very useful indicator for survival in patients with recurrent or metastatic gastric cancer receiving palliative chemotherapy.

  17. Inner power, physical strength and existential well-being in daily life: relatives' experiences of receiving soft tissue massage in palliative home care.

    Science.gov (United States)

    Cronfalk, Berit Seiger; Strang, Peter; Ternestedt, Britt-Marie

    2009-08-01

    This article explores relatives' experiences of receiving soft tissue massage as a support supplement while caring for a dying family member at home. In palliative home care, relatives play an important role as carers to seriously ill and dying family members. To improve their quality of life, different support strategies are of importance. Complementary methods, such as soft tissue massage have become an appreciated supplement for these patients. However, only few studies focus on relatives experiences of receiving soft tissue massage as a supplemental support. Qualitative design Nineteen relatives received soft tissue massage (hand or foot) nine times (25 minutes) in their homes. Open-ended semi-structured tape-recorded interviews were conducted once per relative after the nine times of massage, using qualitative content analysis. Soft tissue massage gave the relatives' feelings of 'being cared for', 'body vitality' and 'peace of mind'. For a while, they put worries of daily life aside as they just experienced 'being'. During massage, it became apparent that body and mind is constituted of an indestructible completeness. The overarching theme was 'inner power, physical strength and existential well-being in their daily lives'. All relatives experienced soft tissue massage positively, although they were under considerable stress. Soft tissue massage could be an option to comfort and support relatives in palliative home care. In palliative nursing care, soft tissue massage could present a worthy supplement in supporting caring relatives.

  18. Assessment of quality of life in patients receiving palliative care: comparison of measurement tools and single item on subjective well-being.

    Science.gov (United States)

    Stiel, Stephanie; Psych, Dipl; Kues, Katharina; Krumm, Norbert; Radbruch, Lukas; Elsner, Frank

    2011-05-01

    Many quality-of-life assessment tools are not feasible in palliative care settings because of the severe impairment of the physical, cognitive, and psychological status of patients. This study investigated whether comprehensive instruments can be replaced by a single item concerning the well-being of patients. From April to December 2008 patients receiving palliative care in three different settings (palliative care unit, inpatient unit of the department of radiotherapy, inpatient hospice) were asked to answer the assessment tools Functional Assessment of Chronic Illness Treatment (FACIT-G), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30), Schedule for the Evaluation of the Individual Quality of Life (SEIQoL), and the Minimal Documentation System (MIDOS) including a single item on well-being. Correlations of sum and specific domain scores were used for correlational analysis. Datasets of 72 patients were collected. The MIDOS single item on well-being correlated significantly with the QoL indexes of the EORTC (Spearman rank correlation r = -0.563) and FACIT-G (0.527). SEIQoL had low to moderate correlations with the other assessment tools. Subscales on physical functioning from the FACIT-G (r = 0.583) and the EORTC-QLQ-C30 (r = 0.385) had the highest correlation with the single item on well-being. Well-being correlated higher with nonphysical subscales of the QoL instruments for patients in the palliative care unit than in the radiotherapy department. The single item is unable to completely replace comprehensive questionnaires, but it is useful to initiate communication on QoL and can be recommended as a substitute for physical-functional aspects of QoL assessment in the palliative care setting.

  19. Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries.

    Science.gov (United States)

    Higginson, Irene J; Daveson, Barbara A; Morrison, R Sean; Yi, Deokhee; Meier, Diane; Smith, Melinda; Ryan, Karen; McQuillan, Regina; Johnston, Bridget M; Normand, Charles

    2017-11-23

    Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death. We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors. One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40-9.90) and living with someone (OR 2.19, 1.33-3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14-5.03). Conversely, functional independence (OR 1.05, 1.04-1.06) and valuing quality of life (OR 3.11, 2.89-3.36) were associated with dying at home. There was a

  20. Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study.

    Science.gov (United States)

    Selman, Lucy E; Higginson, Irene J; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia Mpanga; Ikin, Barbara; Harding, Richard

    2011-04-08

    Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool. A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda. 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well

  1. Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study

    Directory of Open Access Journals (Sweden)

    Moll Tony

    2011-04-01

    Full Text Available Abstract Background Quality of life (QOL is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool. Methods A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI, a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important to 5 (most important, used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda. Results 285 patients were recruited, with a mean age of 40.1; 197 (69.1% were female. Patients' primary diagnoses were HIV (80.7%, cancer (17.9% and other conditions (1.4%. The mean global QOL score was 2.81 (possible range 0 (worst to 5 (best; mean Total score 17.32 (possible range 0 to 30. Patients scored most poorly on Function (mean 0.21, followed by Well being (2.59, Symptoms (5.38, Transcendent (5.50, Interpersonal (9.53 (possible range for subscale scores -30 to 30. Most important to patients were: close relationships (mean 4.13, feeling at peace (4.12, sense of meaning in life (4.10, being active (3.84, physical comfort (2.58. Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115 scored significantly worse than

  2. Fontan completion in reverse order out of necessity: secondary Glenn after primary extracardiac inferior cavopulmonary artery connection.

    Science.gov (United States)

    Dodge-Khatami, Jannika; Aggarwal, Avichal; Taylor, Mary B; Maposa, Douglas; Salazar, Jorge D; Dodge-Khatami, Ali

    2017-07-01

    The primary extracardiac inferior cavopulmonary connection is an unusual novel palliation for single-ventricle physiology, which we first performed in the setting of unfavourable upper-body systemic venous anatomy for a standard bi-directional Glenn, and in lieu of leaving our patient with shunt-dependent physiology. After an initial 16-month satisfactory follow-up, increasing cyanosis led to the discovery of a veno-venous collateral that was coiled, but, more importantly, to impressive growth of a previously diminutive superior caval vein, which allowed us to perform completion Fontan with a good outcome. Performing the single-ventricle staging in a reverse manner, first from below with a primary inferior cavopulmonary connection, followed by Fontan completion from above with a standard superior caval vein bi-directional Glenn, is also possible when deemed necessary.

  3. Does using the interRAI Palliative Care instrument reduce the needs and symptoms of nursing home residents receiving palliative care?

    Science.gov (United States)

    Hermans, Kirsten; De Almeida Mello, Johanna; Spruytte, Nele; Cohen, Joachim; Van Audenhove, Chantal; Declercq, Anja

    2018-02-01

    This study aimed to evaluate whether using the interRAI Palliative Care instrument (the interRAI PC) in nursing homes is associated with reduced needs and symptoms in residents nearing the end of their lives. A quasi-experimental pretest-posttest study using the Palliative care Outcome Scale (POS) was conducted to compare the needs and symptoms of residents nearing the end of their lives in the control and intervention nursing homes. Care professionals at the intervention nursing homes filled out the interRAI PC over the course of a year for all residents aged 65 years and older who were nearing the end of their lives. This intervention was not implemented in the control nursing homes. At baseline, POS scores in the intervention nursing homes were lower (more favorable) than in the control nursing homes on the items "pain", "other symptoms", "family anxiety", and the total POS score. Posttest POS scores for "wasted time" were higher (less favorable) than pretest scores in the intervention nursing homes. In the intervention nursing homes where care professionals did not have prior experience with the interRAI Long-Term Care Facilities (LTCF) assessment instrument (n = 8/15), total POS scores were lower (more favorable) at posttest. One year after introducing the interRAI PC, no reduction in residents' needs and symptoms were detected in the intervention nursing homes. However, reductions in needs and symptoms were found in the subgroup of intervention nursing homes without prior experience with the interRAI LTCF instrument. This may suggest that the use of an interRAI instrument other than the interRAI PC specifically can improve care. Future research should aim at replicating this research with a long-term design in order to evaluate the effect of integrating the use of the interRAI PC in the day-to-day practices at nursing homes.

  4. Cardiopulmonary Exercise Testing in Fontan Patients With and Without Isomerism (Heterotaxy) as Compared to Patients With Primary Ciliary Dyskinesia and Subjects With Structurally Normal Hearts

    DEFF Research Database (Denmark)

    Loomba, Rohit S; Danduran, Michael; Nielsen, Kim G

    2017-01-01

    Isomerism, also known as heterotaxy, is a clinical entity that impacts multiple organ systems both anatomically and functionally. The airways and lungs are involved in a great number of these patients, leading to increased sinopulmonary symptoms, increased need for oxygenation, and increased post...... isomerism. The results are likely limited by selection bias and highlight the need for multicentric efforts to characterize cardiopulmonary exercise testing in those patients with pulmonary isomerism.......Isomerism, also known as heterotaxy, is a clinical entity that impacts multiple organ systems both anatomically and functionally. The airways and lungs are involved in a great number of these patients, leading to increased sinopulmonary symptoms, increased need for oxygenation, and increased...... postoperative ventilatory support. Additionally, these patients often have congenital heart disease requiring Fontan palliation. What has not been previously described, and is the focus of this study, is the results of cardiopulmonary exercise testing in those who have undergone Fontan palliation...

  5. Palliative surgical oncology.

    Science.gov (United States)

    Hanna, Nader N; Bellavance, Emily; Keay, Timothy

    2011-04-01

    Palliative surgical oncology is a relatively new concept, but builds on a long tradition in surgery. As the field of palliative medicine grows and becomes its own specialty, surgeons have been receiving some specialized training in palliative care; devising specific palliative surgical procedures; and reevaluating the ethics of their interactions with patients, especially for the selection of palliative surgical procedures. This is leading to a new form of surgical practice in which the emphasis is on relief of present or anticipated symptoms, even if the interventions do not prolong a patient's life span. Copyright © 2011 Elsevier Inc. All rights reserved.

  6. Quality of Communication Questionnaire for COPD patients receiving palliative care: translation and cross-cultural adaptation for use in Brazil

    Directory of Open Access Journals (Sweden)

    Flávia Del Castanhel

    Full Text Available ABSTRACT Objective: To translate the Quality of Communication Questionnaire (QOC to Portuguese and adapt it for use in Brazil in COPD patients receiving palliative care. Methods: After approval from the first author of the original QOC and the local research ethics committee, the original, 13-item version of the questionnaire was independently translated to Brazilian Portuguese by two Brazilian translators fluent in English. The two translations were analyzed by a bilingual physician and the two Brazilian translators, who reached a consensus and produced another Portuguese version of the QOC. That version was back-translated to English by two translators originally from English-speaking countries and fluent in Portuguese. In order to resolve any discrepancies, an expert panel compared the original version of the QOC with all five versions produced up to that point, the “prefinal” version of the QOC for use in Brazil being thus arrived at. A total of 32 patients admitted to any of three public hospital ICUs in the greater metropolitan area of Florianopolis, in southern Brazil, participated in the pretesting phase of the study, which was aimed at assessing the clarity and cultural acceptability of the prefinal version of the QOC for use in Brazil. Results: Mean patient age was 48.5 ± 18.8 years. Most of the items were well understood and accepted, being rated 8 or higher. One item, regarding death, was considered difficult to understand by the participants in the pretesting phase. After analyzing the back-translated version of the QOC, the first author of the original questionnaire requested that the items “Caring about you as a human being” and “Talking about what death might be like” be changed to “Caring about you as a person” and “Talking about how dying might be”, respectively. The final version of the QOC for use in Brazil was thus arrived at. Conclusions: The QOC was successfully translated to Portuguese and adapted for

  7. Thrombotic complications and thromboprophylaxis across all three stages of single ventricle heart palliation.

    Science.gov (United States)

    Manlhiot, Cedric; Brandão, Leonardo R; Kwok, Judith; Kegel, Stefan; Menjak, Ines B; Carew, Caitlin L; Chan, Anthony K; Schwartz, Steven M; Sivarajan, V Ben; Caldarone, Christopher A; Van Arsdell, Glen S; McCrindle, Brian W

    2012-09-01

    To describe the incidence of thrombotic complications across all 3 stages of single ventricle palliation and the association between thromboprophylaxis use and thrombotic risk. Two separate cross-sectional studies were performed that included 195 patients born between 2003-2008 and 162 patients who underwent Fontan after 2000. The incidence of thrombotic complications was 40% and 28% after initial palliation and superior cavopulmonary connection (SCPC), respectively; 5-year freedom from thrombotic complications after Fontan was 79%. Thromboprophylaxis was initiated for 70%, 46%, and 94% of patients after initial palliation, SCPC, and Fontan, respectively. Thromboprophylaxis with enoxaparin (vs no thromboprophylaxis) was associated with a reduction in risk of thrombotic complications after initial palliation (hazard ratio [HR] 0.5, P = .05) and SCPC (HR 0.2, P = .04). Thromboprophylaxis with warfarin was associated with a reduction in thrombotic complications after Fontan (HR 0.27, P = .05 vs acetylsalicylic acid; HR 0.18, P = .02 vs no thromboprophylaxis). Thrombotic complications were associated with increased mortality after initial palliation (HR 5.5, P SCPC (HR 12.5, P < .001). Three patients experienced major bleeding complications without permanent sequelae (2 enoxaparin, 1 warfarin). Given the negative impact of thrombotic complications on survival, the low risk of serious bleeding complications, and the association between thromboprophylaxis and lowered thrombotic complication risk across all 3 palliative stages, routine use of thromboprophylaxis from the initial palliation to the early post-Fontan period in this population may be indicated. Copyright © 2012 Mosby, Inc. All rights reserved.

  8. Successful Fontan conversion combined with cardiac resynchronization therapy for a case of failing Fontan circulation with ventricular dysfunction.

    Science.gov (United States)

    Takeuchi, Daiji; Asagai, Seiji; Ishihara, Kazuaki; Nakanishi, Toshio

    2014-11-01

    Although Fontan conversion combined with cardiac resynchronization therapy appears to be an effective surgical solution for the management of failing Fontan circulation with refractory atrial arrhythmia and cardiac dysfunction due to dyssynchronous ventricular wall motion, limited data are available on the mid- to long-term results of this treatment. We report our successful experience with Fontan conversion combined with cardiac resynchronization therapy in a male patient with failing Fontan circulation who showed favourable outcomes 5 years after the operation. © The Author 2014. Published by Oxford University Press on behalf of the European Association for Cardio-Thoracic Surgery. All rights reserved.

  9. Arrhythmia and exercise intolerance in Fontan patients

    DEFF Research Database (Denmark)

    Idorn, L; Juul, K; Jensen, A S

    2013-01-01

    BACKGROUND: Long-term survival after the Fontan procedure shows excellent results but is associated with a persistent risk of arrhythmias and exercise intolerance. We aimed to analyze the current burden of clinically relevant arrhythmia and severe exercise intolerance in Danish Fontan patients...... and estimated to 99.1% per year. Prevalence of clinically relevant arrhythmia and severe exercise intolerance increased significantly with age and was found in 32% and 85% of patients ≥20years, respectively. Thus, from survival data and logistic regression models the future prevalence of patients, clinically...... relevant arrhythmia and severe exercise intolerance were estimated, revealing a considerable augmentation. Furthermore, resting and maximum cardiac index, resting stroke volume index and pulmonary diffusing capacity decreased significantly with age while diastolic and systolic ventricular function...

  10. The Fontan pathway: What's down the road?

    OpenAIRE

    Khambadkone, Sachin

    2008-01-01

    The Fontan circulation results from routing of the systemic venous blood to the pulmonary circulation without a hydraulic source of a ventricle. Although a hypertrophied right atrium was thought to be essential for this circulation, the current form of the operation has neither the right atrium nor any valves in the venous circulation that is connected to the pulmonary arteries directly. Modifications in the operative model was one of the early steps in improving outcome. Use of fenestration,...

  11. Assessment of status of patients receiving palliative home care and services provided in a rural area-kerala, India.

    Science.gov (United States)

    Thayyil, Jayakrishnan; Cherumanalil, Jeeja Mathummal

    2012-09-01

    For the first time in India, a Pain and Palliative Care policy to guide the community-based home care initiatives was declared by the Government of Kerala state. In Kerala, majority of the panchayats (local self-governments) are now conducting home-based palliative care as part of primary health care. National focus domain areas in palliative care research are structure and process, the physical aspects, and also the social aspects of care. The study was conducted to assess the patient's status and the services provided by palliative home care. The descriptive study was conducted at Mavoor panchayat-Kozhikode district of Kerala, India by collecting information from the case records, nurses diary notes of all enrolled patients. Collecting information from the case records, nurses diary notes of all enrolled patients. The data were entered using Microsoft excel for Windows XP and analyzed using SPSS 16.0 (Statistical Package for Social Sciences; SPSS Inc., Chicago, IL, USA). Totally, 104 patients were enrolled. Diagnosis wise major category was degenerative diseases. There were 27% persons suffering from cerebrovascular accidents, 15.3% with malignancies, 8.7% with coronary artery disease, 5.8% with complications of diabetes, and 8.7% were with fracture of bones. The major complaints were weakness (41.3%), tiredness (31.7%), and pain (27%). Twenty-five percent persons complained of urinary incontinence, 12.5% complained of ulcer, 10.6% of edema, and 9.6% of mental/emotional agony. The activity of daily living status was as follows. Twenty-five percent subjects were completely bed ridden. 5.8% were feeding through Ryles tube, 16.3% had urinary incontinence, 9.6% were having no bowel control. The service could address most of the medical, psychosocial, and supportive needs of the patients and reduce their pain and symptoms. The interface between institutional-based care and home care needs more exploration and prospective studies.

  12. Hemodynamic causes of exercise intolerance in Fontan patients

    DEFF Research Database (Denmark)

    Hebert, Anders; Jensen, Annette S; Mikkelsen, Ulla Ramer

    2014-01-01

    BACKGROUND: Exercise intolerance is frequent among Fontan patients and an important determinant for quality of life. This study investigated the hemodynamic causes of impaired exercise capacity in Fontan patients with particular focus on the influence of stroke volume index (SVI) and heart rate (HR...

  13. Exercise limitation in patients with Fontan circulation : A review

    NARCIS (Netherlands)

    Takken, Tim; Tacken, Marieke H. P.; Blank, A. Christian; Hulzebos, Erik H.; Strengers, Jan L. M.; Helders, Paul J. M.

    2007-01-01

    The aim of the current literature study was to perform a literature review of the factors contributing to exercise limitation and physiological response to exercise in patients with Fontan circulation. In patients with Fontan circulation, peak oxygen uptake ranged from about 14.4 to 32.3 ml/min/kg,

  14. Preoperative single ventricle function determines early outcome after second-stage palliation of single ventricle heart.

    Science.gov (United States)

    Pająk, Jacek; Buczyński, Michał; Stanek, Piotr; Zalewski, Grzegorz; Wites, Marek; Szydłowski, Lesław; Mazurek, Bogusław; Tomkiewicz-Pająk, Lidia

    2017-09-11

    Second-stage palliation with hemi-Fontan or bidirectional Glenn procedures has improved the outcomes of patients treated for single-ventricle heart disease. The aim of this study was to retrospectively analyze risk factors for death after second-stage palliation of single-ventricle heart and to compare therapeutic results achieved with the hemi-Fontan and bidirectional Glenn procedures. We analyzed 60 patients who had undergone second-stage palliation for single-ventricle heart. Group HF consisted of 23 (38.3%) children who had been operated with the hemi-Fontan method; Group BDG consisted of 37 (61.7%) who had been operated with the bidirectional Glenn method. The analysis focused on 30-day postoperative mortality rates, clinical and echocardiographic data, and early complications. The patients' ages at the time of repair was 33 ± 11.2 weeks; weight was 6.7 ± 1.2 kg. The most common anatomic subtype was hypoplastic left heart syndrome, in 36 (60%) patients. The early mortality rate was 13.3%. Significant preoperative atrioventricular valve regurgitation, single-ventricle heart dysfunction, pneumonia/sepsis, and arrhythmias were associated with higher mortality rates after second-stage palliation. Multivariate analysis identified significant preoperative single-ventricle heart dysfunction as an independent predictor of early death after second-stage palliation. No differences were found in the analyzed variables after bidirectional Glenn compared with hemi-Fontan procedures. Significant preoperative atrioventricular valve regurgitation, arrhythmias and pneumonia/sepsis are closely correlated with mortality in patients with single-ventricle heart after second-stage palliation. Preoperative significant single-ventricle heart dysfunction is an independent mortality predictor in this group of patients. There are no differences in clinical, echocardiographic data, or outcomes in patients treated with the hemi-Fontan compared with bidirectional Glenn procedures.

  15. Efficacy of lidocaine in patients receiving palliative care with opioid-refractory cancer pain with a neuropathic component: study protocol for a randomized controlled study.

    Science.gov (United States)

    Salas, Sébastien; Auquier, Pascal; Duffaud, Florence; Garnier, Stéphanie Ranque; Deschamps, Mélanie; Honoré, Stéphane; Sudour, Patrick; Baumstarck, Karine

    2014-08-12

    The management of patients suffering from opioid-refractory cancer pain with a neuropathic component remains an important challenge for healthcare workers. Only one retrospective study specifically reported the use of intravenous (IV) lidocaine amongst the palliative care unit population, the study found that there was a positive response to this therapy. These preliminary uncontrolled results need to be confirmed by randomized controlled trials. The primary objective of this study is to assess the analgesic efficacy of IV lidocaine in patients in palliative care suffering from opioid-refractory cancer pain with a neuropathic component. The secondary objectives are to assess the tolerance of, symptomatology, and patient satisfaction with the therapeutic approach. This will be a multicenter, prospective, randomized, placebo-controlled, double-blind, two-parallel group study. It will take place in eight adult palliative care units across France. The main inclusion criteria are as follows: adult patients suffering from opioid-refractory cancer pain with a neuropathic component, and those receiving palliative care as defined by French Society of Palliative and Support Care. Participants will be randomized (1:1 allocation ratio) to one of two treatment groups: a) lidocaine-experimental group (intravenous lidocaine), or b) placebo-control group (intravenous saline solution). Evaluation assessments will be taken at baseline (T0 randomization), 40 minutes (T1), 120 minutes (T2), 12 hours (T3), 24 hours (T4), 48 hours (T5), and 14 days (T6) after baseline. The primary endpoint is change in the pain level between T0 and T1. The secondary endpoints are: changes in the pain level between T0 and other times, intensity of the neuropathic pain component, daily opioid consumption, symptoms (as classified by the MD Anderson Symptom Inventory), adverse events, and patient's satisfaction (measured using the Pain Treatment Satisfaction Scale). A sample size of 200 individuals will be

  16. Abnormalities in serum biomarkers correlate with lower cardiac index in the Fontan population.

    Science.gov (United States)

    Marino, Bradley S; Goldberg, David J; Dorfman, Adam L; King, Eileen; Kalkwarf, Heidi; Zemel, Babette S; Smith, Margaret; Pratt, Jesse; Fogel, Mark A; Shillingford, Amanda J; Deal, Barbara J; John, Anitha S; Goldberg, Caren S; Hoffman, Timothy M; Jacobs, Marshall L; Lisec, Asher; Finan, Susan; Kochilas, Lazaros K; Pawlowski, Thomas W; Campbell, Kathleen; Joiner, Clinton; Goldstein, Stuart L; Stephens, Paul; Chin, Alvin J

    2017-01-01

    Fontan survivors have depressed cardiac index that worsens over time. Serum biomarker measurement is minimally invasive, rapid, widely available, and may be useful for serial monitoring. The purpose of this study was to identify biomarkers that correlate with lower cardiac index in Fontan patients. Methods and results This study was a multi-centre case series assessing the correlations between biomarkers and cardiac magnetic resonance-derived cardiac index in Fontan patients ⩾6 years of age with biochemical and haematopoietic biomarkers obtained ±12 months from cardiac magnetic resonance. Medical history and biomarker values were obtained by chart review. Spearman's Rank correlation assessed associations between biomarker z-scores and cardiac index. Biomarkers with significant correlations had receiver operating characteristic curves and area under the curve estimated. In total, 97 cardiac magnetic resonances in 87 patients met inclusion criteria: median age at cardiac magnetic resonance was 15 (6-33) years. Significant correlations were found between cardiac index and total alkaline phosphatase (-0.26, p=0.04), estimated creatinine clearance (0.26, p=0.02), and mean corpuscular volume (-0.32, pbiomarkers was 0.63-0.69. Area under the curve for the three-biomarker panel was 0.75. Comparison of cardiac index above and below the receiver operating characteristic curve-identified cut-off points revealed significant differences for each biomarker (pbiomarkers to monitor haemodynamics and organ-specific effects warrants prospective investigation.

  17. Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries

    Directory of Open Access Journals (Sweden)

    Irene J. Higginson

    2017-11-01

    Full Text Available Abstract Background Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death. Methods We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors. Results One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56% followed by inpatient palliative care/hospice units (22%. Hospital was least preferred (35/138, 25%, followed by nursing home (20% and home (16%; hospice/palliative care unit was rarely least preferred (4%. Most respondents prioritised improving quality of life, either alone (54%, or equal with life extension (39%; few (3% chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40–9.90 and living with someone (OR 2.19, 1.33–3.62. Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14–5.03. Conversely, functional independence (OR 1.05, 1.04–1.06 and valuing quality of life (OR 3.11, 2.89–3

  18. Impact of Fontan conversion with arrhythmia surgery and pacemaker therapy.

    Science.gov (United States)

    Hiramatsu, Takeshi; Iwata, Yusuke; Matsumura, Goki; Konuma, Takeshi; Yamazaki, Kenji

    2011-10-01

    In the long-term period after Fontan operation, atrial arrhythmia was one of the important factors to decide the postoperative quality of life. We reviewed the impact of Fontan conversion with arrhythmia surgery and pacemaker therapy. Thirty-eight patients underwent Fontan conversion using extracardiac conduit from 1992, and 22 patients with atrial arrhythmia underwent maze procedure simultaneously using cryoablation or radiofrequency ablation and epicardial DDD pacemaker implantation and 16 patients had regular 'sinus' rhythm before Fontan conversion. Mean follow-up period was 52 months. Pre- and postoperative clinical course were analyzed. Average weight, age at Fontan conversion, and years after first Fontan operation were 49.0 kg, 25.8 years old, 14.7 years, respectively. Nineteen percent of patients were in New York Heart Association class I (NYHA I), and 74% of patients were in NYHA II, and 7% were in NYHA III, respectively. Except three early deaths, actual survival rate at 1 year and 5 years were 80% and 64%, respectively. In survivors, 80% of the patients obtained regular heart rhythm including artificial pacemaker rhythm, although only 43% of the patients had regular 'sinus' rhythm before the Fontan conversion. Postoperative average cardiothoracic ratio and oxygen saturation (SpO(2)) were 50% and 94%, and 74% of patients were in NYHA I and 26% were in NYHA II, respectively, after Fontan conversion. Mid-term results of Fontan conversion with arrhythmia surgery and pacemaker therapy were acceptable. Restoration of regular rhythm might improve the postoperative NYHA status and the activity of the daily life. Copyright © 2011 European Association for Cardio-Thoracic Surgery. Published by Elsevier B.V. All rights reserved.

  19. Use of Palliative Care in Patients With End-Stage COPD and Receiving Home Oxygen: National Trends and Barriers to Care in the United States.

    Science.gov (United States)

    Rush, Barret; Hertz, Paul; Bond, Alexandra; McDermid, Robert C; Celi, Leo Anthony

    2017-01-01

    To investigate the use of palliative care (PC) in patients with end-stage COPD receiving home oxygen hospitalized for an exacerbation. A retrospective nationwide cohort analysis was performed, using the Nationwide Inpatient Sample. All patients ≥ 18 years of age with a diagnosis of COPD, receiving home oxygen, and admitted for an exacerbation were included. A total of 55,208,382 hospitalizations from the 2006-2012 Nationwide Inpatient Sample were examined. There were 181,689 patients with COPD, receiving home oxygen, and admitted for an exacerbation; 3,145 patients (1.7%) also had a PC contact. There was a 4.5-fold relative increase in PC referral from 2006 (0.45%) to 2012 (2.56%) (P palliative care, with white patients referred more often than minorities (P < .01). Factors associated with PC referral included age (OR, 1.03; 95% CI, 1.02-1.04; P < .01), metastatic cancer (OR, 2.40; 95% CI, 2.02-2.87; P < .01), nonmetastatic cancer (OR, 2.75; 95% CI, 2.43-3.11; P < .01), invasive mechanical ventilation (OR, 4.89; 95% CI, 4.31-5.55; P < .01), noninvasive mechanical ventilation (OR, 2.84; 95% CI, 2.58-3.12; P < .01), and Do Not Resuscitate status (OR, 7.95; 95% CI, 7.29-8.67; P < .01). The use of PC increased dramatically during the study period; however, PC contact occurs only in a minority of patients with end-stage COPD admitted with an exacerbation. Copyright © 2016 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.

  20. Clinical Phenotypes of Fontan Failure: Implications for Management.

    Science.gov (United States)

    Book, Wendy M; Gerardin, Jennifer; Saraf, Anita; Marie Valente, Anne; Rodriguez, Fred

    2016-07-01

    Fontan failure has been variably and inconsistently described in the literature, leading to challenges in comparing studies and evaluating treatments. Development of a conceptual framework to describe clinical phenotypes will aid in consistent terminology in the literature. In the heart failure literature, several key concepts have been described-"heart failure" is a clinical syndrome of various etiologies, with phenotype-specific response to therapies. As the congenital heart disease community struggles to grapple with "Fontan failure," these concepts come to light. Fontan failure in the context of four clinical phenotypes, including evaluation, potential management strategies, and future directions is discussed. © 2016 Wiley Periodicals, Inc.

  1. Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study.

    Science.gov (United States)

    Karlsson, Magdalena; Friberg, Febe; Wallengren, Catarina; Ohlén, Joakim

    2014-01-01

    Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment. This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach. THIS STUDY HAS IDENTIFIED DIFFERENT SPHERES IN WHICH PEOPLE DIAGNOSED WITH ADVANCED GASTROINTESTINAL CANCER VACILLATE BETWEEN EXISTENTIAL UNCERTAINTY AND CERTAINTY: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people's lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves -a new experience that lays the foundation for development of knowledge, personal learning and growth. People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present

  2. Evolution of Ventricular Energetics in the Different Stages of Palliation of Hypoplastic Left Heart Syndrome: A Retrospective Clinical Study.

    Science.gov (United States)

    Di Molfetta, A; Iacobelli, R; Guccione, P; Di Chiara, L; Rocchi, M; Cobianchi Belisari, F; Campanale, M; Gagliardi, M G; Filippelli, S; Ferrari, G; Amodeo, A

    2017-12-01

    Hyperplastic left heart syndrome (HLHS) patients are palliated by creating a Fontan-type circulation passing from different surgical stages. The aim of this work is to describe the evolution of ventricular energetics parameters in HLHS patients during the different stages of palliation including the hybrid, the Norwood, the bidirectional Glenn (BDG), and the Fontan procedures. We conducted a retrospective clinical study enrolling all HLHS patients surgically treated with hybrid procedure and/or Norwood and/or BDG and/or Fontan operation from 2011 to 2016 collecting echocardiographic and hemodynamic data. Measured data were used to calculate energetic variables such as ventricular elastances, external and internal work, ventriculo-arterial coupling and cardiac mechanical efficiency. From 2010 to 2016, a total of 29 HLHS patients undergoing cardiac catheterization after hybrid (n = 7) or Norwood (n = 6) or Glenn (n = 8) or Fontan (n = 8) procedure were retrospectively enrolled. Ventricular volumes were significantly higher in the Norwood circulation than in the hybrid circulation (p = 0.03) with a progressive decrement from the first stage to the Fontan completion. Ventricular elastances were lower in the Norwood circulation than in the hybrid circulation and progressively increased passing from the first stage to the Fontan completion. The arterial elastance and Rtot increased in the Fontan circulation. The ventricular work progressively increased. Finally, the ventricular efficiency improves passing from the first to the last stage of palliation. The use of ventricular energetic parameters could lead to a more complete evaluation of such complex patients to better understand their adaptation to different pathophysiological conditions.

  3. Palliative Care-Albania.

    Science.gov (United States)

    Rama, Rudina; Çarçani, Valbona; Prifti, Fatmir; Huta, Kristo; Xhixha, Ali; Connor, Stephen R

    2018-02-01

    Sixty percent of cancer patients are diagnosed with advanced stages of disease and those diagnosed in early stages face challenges to receive adequate treatment. Palliative care has had significant developments in recent years in Albania because of a close partnership with the Ministry of Health, local nonprofit organizations, and the Open Society Foundation Albania. In 2011, a five-year action plan for palliative care as one of four parts of the National Cancer Control Plan was approved. At the end of 2014, the first palliative care law was approved by Parliament. Palliative care by-laws, documents, standards, clinical protocols, and guidelines for adults and children have been developed. Training and education are being provided to primary care professionals. Curricula on palliative care have been developed for the faculty of medicine, nursing high schools, and social work. About 80% of essential medications used in palliative care are available in Albania, 50% of these are paid for and have some access restrictions, and meanwhile the opiophobia still remains an enormous barrier. In the last three years, significant progress has been made in service provision. From only one public palliative care service in 2013, there are now eight palliative care services in eight of the 11 regional hospitals. By the end of 2016, it is expected that palliative care services will be available in all regional hospitals in the country. Copyright © 2017. Published by Elsevier Inc.

  4. Non-invasive Investigations for the Diagnosis of Fontan-Associated Liver Disease in Pediatric and Adult Fontan Patients

    Directory of Open Access Journals (Sweden)

    Amyna Fidai

    2017-03-01

    Full Text Available Fontan-associated liver disease (FALD is a serious complication related to the chronically elevated venous pressure and low cardiac output of this abnormal circulation. However, diagnostic markers for this condition are limited. We hypothesized that specific tests for fibrosis developed for other chronic liver diseases would identify a higher prevalence of FALD than ultrasound and standard laboratory tests and that identified abnormalities would correlate with time post-Fontan. In this cross-sectional study, we assessed 19 children (average age 8.4 ± 4.3 and 5.4 ± 4.1 years post-Fontan and 8 adults (average age 31.5 ± 8.9 and 21.1 ± 4 years post-Fontan using standard serum laboratory investigations assessing hepatic integrity and function, the FibroTest, liver ultrasound, and transient elastography (FibroScan. In adult Fontan patients, hemoglobin, C-reactive protein, and gamma-glutamyl transpeptidase were significantly increased, and white blood cell and platelet counts were significantly decreased in comparison to the pediatric cohort. International normalized ratio was mildly elevated in both children and adults. FibroTest results were suggestive of fibrosis regardless of time post-Fontan. FibroScan measurements were significantly correlated with time post-Fontan, but the incidence of ultrasound-detected liver abnormalities was variable. No cases of hepatocellular carcinoma were identified. Abnormalities suggestive of FALD occur in both children and adults post-Fontan. Select laboratory tests, and possibly ultrasound and FibroScan in some patients, appear to have the most promise for the non-invasive detection of FALD.

  5. Neuromuscular electrical stimulation of the quadriceps in patients with non-small cell lung cancer receiving palliative chemotherapy: a randomized phase II study.

    Directory of Open Access Journals (Sweden)

    Matthew Maddocks

    Full Text Available A reduced exercise capacity is associated with increased morbidity and mortality in patients with advanced non-small cell lung cancer (NSCLC. Therapeutic exercise can be beneficial and neuromuscular electrical stimulation (NMES of the quadriceps muscles may represent a practical approach. The primary aim of this study was to determine the acceptability of NMES of the quadriceps to patients with NSCLC used alongside palliative chemotherapy. Secondary aims explored aspects of safety and efficacy of NMES in this setting.Patients with advanced NSCLC due to receive first-line palliative chemotherapy were randomized to usual care with or without NMES. They were asked to undertake 30 minute sessions of NMES, ideally daily, but as a minimum, three times weekly. For NMES to be considered acceptable, it was predetermined that ≥80% of patients should achieve this minimum level of adherence. Qualitative interviews were held with a subset of patients to explore factors influencing adherence. Safety was assessed according to the Common Terminology Criteria for Adverse Events. Quadriceps muscle strength, thigh lean mass, and physical activity level were assessed at baseline and after three cycles of chemotherapy.49 patients (28 male, median (IQR age 69 (64-75 years participated. Of 30 randomized to NMES, 18 were eligible for the primary endpoint, of whom 9 (50% [90% CI, 29 to 71] met the minimum level of adherence. Adherence was enhanced by incorporating sessions into a daily routine and hindered by undesirable effects of chemotherapy. There were no serious adverse events related to NMES, nor significant differences in quadriceps muscle strength, thigh lean mass or physical activity level between groups.NMES is not acceptable in this setting, nor was there a suggestion of benefit. The need remains to explore NMES in patients with cancer in other settings.Current Controlled Trials ISRCTN 42944026 www.controlled-trials.com/ISRCTN42944026.

  6. Palliative radiotherapy and oncology nursing.

    Science.gov (United States)

    McMenamin, Erin; Ross, Nicole; Jones, Joshua

    2014-11-01

    To describe indications and expected outcomes for palliative radiotherapy and to highlight opportunities for nurse involvement in palliative radiotherapy. Journal articles, clinical guidelines, case studies. Palliative radiotherapy is a safe, effective treatment modality for many symptoms of advanced cancer. Opportunities exist to help patients and families opt for shorter palliative radiotherapy courses when quality of life is the goal. Nurses involved in the care of patients receiving palliative radiotherapy must be aware of the indications and expected outcomes associated with therapy. Nurses can play an important role in the management of symptoms, education, and communication between the team and the patient and family.

  7. In real life, one-quarter of patients with hormone receptor-positive metastatic breast cancer receive chemotherapy as initial palliative therapy: a study of the Southeast Netherlands Breast Cancer Consortium.

    Science.gov (United States)

    Lobbezoo, D J A; van Kampen, R J W; Voogd, A C; Dercksen, M W; van den Berkmortel, F; Smilde, T J; van de Wouw, A J; Peters, F P J; van Riel, J M G H; Peters, N A J B; de Boer, M; Peer, P G M; Tjan-Heijnen, V C G

    2016-02-01

    The objective of this study was to present initial systemic treatment choices and the outcome of hormone receptor-positive (HR+) metastatic breast cancer. All the 815 consecutive patients diagnosed with metastatic breast cancer in 2007-2009 in eight participating hospitals were identified. From the 611 patients with HR+ disease, a total of 520 patients with HER2-negative (HER2-) breast cancer were included. Initial palliative systemic treatment was registered. Progression-free survival (PFS) and overall survival (OS) per initial palliative systemic therapy were obtained using the Kaplan-Meier method and compared using the log-rank test. From the total of 520 patients with HR+/HER2- metastatic breast cancer, 482 patients (93%) received any palliative systemic therapy. Patients that received initial chemotherapy (n = 116) were significantly younger, had less comorbidity, had received more prior adjuvant systemic therapy and were less likely to have bone metastasis only compared with patients that received initial endocrine therapy (n = 366). Median PFS of initial palliative chemotherapy was 5.3 months [95% confidence interval (CI) 4.2-6.2] and of initial endocrine therapy 13.3 months (95% CI 11.3-15.5), with a median OS of 16.1 and 36.9 months, respectively. Initial chemotherapy was also associated with worse outcome in terms of PFS and OS after adjustment for prognostic factors. A high percentage of patients with HR+ disease received initial palliative chemotherapy, which was associated with worse outcome, even after adjustment of relevant prognostic factors. © The Author 2015. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For permissions, please email: journals.permissions@oup.com.

  8. Fontan completions over 10 years after Glenn procedures.

    Science.gov (United States)

    Sughimoto, Koichi; Matsuo, Kozo; Niwa, Koichiro; Kawasoe, Yasutaka; Tateno, Shigeru; Shirai, Takeaki; Kabasawa, Masashi; Ohba, Masanao

    2014-04-01

    Despite the broadened indications for Fontan procedure, there are patients who could not proceed to Fontan procedure because of the strict Fontan criteria during the early period. Some patients suffer from post-Glenn complications such as hypoxia, arrhythmia, or fatigue with exertion long after the Glenn procedure. We explored the possibility of Fontan completion for those patients. Between 2004 and 2010, five consecutive patients aged between 13 and 31 years (median 21) underwent Fontan completion. These patients had been followed up for more than 10 years (10 to 13, median 11) after Glenn procedure as non-Fontan candidates. We summarise these patients retrospectively in terms of their pre-operative physiological condition, surgical strategy, and problems that these patients hold. Pre-operative catheterisation showed pulmonary vascular resistance ranging from 0.9 to 3.7 (median 2.2), pulmonary to systemic flow ratio of 0.3 to 1.6 (median 0.9), and two patients had significant aortopulmonary collaterals. Extracardiac total cavopulmonary connections were performed in three patients, lateral tunnel total cavopulmonary connection in one patient, and intracardiac total cavopulmonary connection in one patient, without a surgical fenestration. Concomitant surgeries were required including valve surgeries--atrioventricular valve plasty in three patients and tricuspid valve replacement in one patient; systemic outflow tract obstruction release--Damus-Kaye-Stansel procedure in two patients and subaortic stenosis resection in one patient; and anti-arrhythmic therapies--maze procedure in two patients, cryoablation in two patients, and pacemaker implantation in two patients. All patients are now in New York Heart Association category I. Patients often suffer from post-Glenn complications. Of those, if they are re-examined carefully, some may have a chance to undergo Fontan completion and benefit from it. Multiple lesions such as atrioventricular valve regurgitation, systemic

  9. Palliative Care in Cancer

    Science.gov (United States)

    ... NCI support palliative care research? What is palliative care? Palliative care is care given to improve the quality ... the direction of a physician. Who gives palliative care ? Palliative care is usually provided by palliative care specialists, ...

  10. Severely regurgitant left ventricle to ascending aorta conduit in a failing fontan patient treated with a vascular endograft and melody transcatheter pulmonary valve via hybrid approach.

    Science.gov (United States)

    Boe, Brian A; Rectenwald, John E; Bocks, Martin L

    2016-12-01

    A 28-year-old male with single ventricular heart disease status post Fontan palliation and subsequent placement of left ventricle to ascending aorta (LV-AAo) valved conduit developed ascites and edema. Diagnostic catheterization revealed elevated ventricular end diastolic pressures (EDP) secondary to severe LV-AAo conduit regurgitation. Given the unique anatomy, surgical access via the right axillary artery provided optimal route for transcatheter valve implantation within the conduit. The procedure resulted in significant hemodynamic improvement with no complications. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

  11. Enabling sense-making for patients receiving outpatient palliative treatment: A participatory action research driven model for person-centered communication.

    Science.gov (United States)

    Öhlén, J; Carlsson, G; Jepsen, A; Lindberg, I; Friberg, F

    2016-06-01

    In clinical palliative cancer care, the diversity of patient concerns over time makes information provision a critical issue, the demands of information-seeking patients presenting a challenge to both the communicative and organizational skills of the health provider. This study puts forward a practice model for communication between patients, their family members, and professional health providers during ongoing palliative chemotherapy; a model which supports the providers in enabling person-centered communication. A constant comparative analysis adapted to participatory action research was applied. The model was developed step-wise in three interrelated cycles, with results from previous studies from palliative cancer care processed in relation to professional health providers' experience-based clinical knowledge. In doing this, focus group discussions were carried out with providers and patients to develop and revise the model. The Enabling Sense Making model for person-centered communication gave rise to three domains (which are also the major communicative actors in palliative care): the patient, the family, and the provider. These actors were placed in the context of a communicative arena. The three respective domains were built up in different layers discriminating between significant aspects of person-centered communication, from the manifest that is most usually explicated in dialogues, to the latent that tends to be implicitly mediated. The model intends to facilitate timely reorientation of care from curative treatment or rehabilitation to palliation, as well as the introduction of appropriate palliative interventions over time during palliative phases. In this way the model is to be regarded a frame for directing the awareness of the professionals, which focuses on how to communicate and how to consider the patient's way of reasoning. The model could be used as a complement to other strategic initiatives for the advancement of palliative care

  12. Renal resistive index reflects Fontan pathophysiology and predicts mortality.

    Science.gov (United States)

    Ohuchi, Hideo; Negishi, Jun; Hayama, Yohsuke; Miyazaki, Aya; Shiraishi, Isao; Ichikawa, Hajime

    2017-10-01

    The renal resistive index (RRI) reflects non-renal pathophysiology, such as great artery stiffness, haemodynamics and even end-organ damage in patients with hypertension. This study was conducted to clarify the clinical significance of the RRI in Fontan pathophysiology. We measured the RRI in 280 consecutive Fontan patients and 36 healthy controls. The patients exhibited a higher RRI than the controls (0.71±0.07 vs 0.60±0.04, ppathophysiology. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  13. Effect of Lorazepam With Haloperidol vs Haloperidol Alone on Agitated Delirium in Patients With Advanced Cancer Receiving Palliative Care: A Randomized Clinical Trial.

    Science.gov (United States)

    Hui, David; Frisbee-Hume, Susan; Wilson, Annie; Dibaj, Seyedeh S; Nguyen, Thuc; De La Cruz, Maxine; Walker, Paul; Zhukovsky, Donna S; Delgado-Guay, Marvin; Vidal, Marieberta; Epner, Daniel; Reddy, Akhila; Tanco, Kimerson; Williams, Janet; Hall, Stacy; Liu, Diane; Hess, Kenneth; Amin, Sapna; Breitbart, William; Bruera, Eduardo

    2017-09-19

    The use of benzodiazepines to control agitation in delirium in the last days of life is controversial. To compare the effect of lorazepam vs placebo as an adjuvant to haloperidol for persistent agitation in patients with delirium in the setting of advanced cancer. Single-center, double-blind, parallel-group, randomized clinical trial conducted at an acute palliative care unit at MD Anderson Cancer Center, Texas, enrolling 93 patients with advanced cancer and agitated delirium despite scheduled haloperidol from February 11, 2014, to June 30, 2016, with data collection completed in October 2016. Lorazepam (3 mg) intravenously (n = 47) or placebo (n = 43) in addition to haloperidol (2 mg) intravenously upon the onset of an agitation episode. The primary outcome was change in Richmond Agitation-Sedation Scale (RASS) score (range, -5 [unarousable] to 4 [very agitated or combative]) from baseline to 8 hours after treatment administration. Secondary end points were rescue neuroleptic use, delirium recall, comfort (perceived by caregivers and nurses), communication capacity, delirium severity, adverse effects, discharge outcomes, and overall survival. Among 90 randomized patients (mean age, 62 years; women, 42 [47%]), 58 (64%) received the study medication and 52 (90%) completed the trial. Lorazepam + haloperidol resulted in a significantly greater reduction of RASS score at 8 hours (-4.1 points) than placebo + haloperidol (-2.3 points) (mean difference, -1.9 points [95% CI, -2.8 to -0.9]; P delirium-related distress and survival. The most common adverse effect was hypokinesia (3 patients in the lorazepam + haloperidol group [19%] and 4 patients in the placebo + haloperidol group [27%]). In this preliminary trial of hospitalized patients with agitated delirium in the setting of advanced cancer, the addition of lorazepam to haloperidol compared with haloperidol alone resulted in a significantly greater reduction in agitation at 8 hours. Further

  14. Acetabular Fracture Fixation in an Adult with Fontan Physiology. A ...

    African Journals Online (AJOL)

    Acetabular Fracture Fixation in an Adult with Fontan Physiology. A Case Report. D Olabumuyi, R Taib, S Nair, C F Chong. Abstract. No Abstract. Nigerian Journal of Orthopaedics and Trauma Vol. 6 (2) 2007: pp. 80-82. Full Text: EMAIL FULL TEXT EMAIL FULL TEXT · DOWNLOAD FULL TEXT DOWNLOAD FULL TEXT.

  15. Patient-centeredness to anticipate and organize an end-of-life project for patients receiving at-home palliative care: a phenomenological study.

    Science.gov (United States)

    Oude Engberink, Agnès; Badin, Mélanie; Serayet, Philippe; Pavageau, Sylvain; Lucas, François; Bourrel, Gérard; Norton, Joanna; Ninot, Grégory; Senesse, Pierre

    2017-02-23

    The development of end-of-life primary care is a socio-medical and ethical challenge. However, general practitioners (GPs) face many difficulties when initiating appropriate discussion on proactive shared palliative care. Anticipating palliative care is increasingly important given the ageing population and is an aim shared by many countries. We aimed to examine how French GPs approached and provided at-home palliative care. We inquired about their strategy for delivering care, and the skills and resources they used to devise new care strategies. Twenty-one GPs from the South of France recruited by phone according to their various experiences of palliative care agreed to participate. Semi-structured interview transcripts were examined using a phenomenological approach inspired by Grounded theory, and further studied with semiopragmatic analysis. Offering palliative care was perceived by GPs as a moral obligation. They felt vindicated in a process rooted in the paradigm values of their profession. This study results in two key findings: firstly, their patient-centred approach facilitated the anticipatory discussions of any potential event or intervention, which the GPs openly discussed with patients and their relatives; secondly, this approach contributed to build an "end-of-life project" meeting patients' wishes and needs. The GPs all shared the idea that the end-of-life process required human presence and recommended that at-home care be coordinated and shared by multi-professional referring teams. The main tenets of palliative care as provided by GPs are a patient-centred approach in the anticipatory discussion of potential events, personalized follow-up with referring multi-professional teams, and the collaborative design of an end-of-life project meeting the aspirations of the patient and his or her family. Consequently, coordination strategies involving specialized teams, GPs and families should be modelled according to the specificities of each care system.

  16. Who to include in palliative care research? Consequences of different population definitions in palliative care epidemiology.

    NARCIS (Netherlands)

    Borgsteede, S.D.; Deliens, L.; Francke, A.L.; Stalman, W.A.B.; Willems, D.L.; Eijk, T.T.M. van; Wal, G. van der

    2003-01-01

    Object of the study: Epidemiological research into palliative care faces the problem of defining an adequate research population. Subjects in studies are alternately defined as patients receiving 'palliative care' , 'palliative treatment' or 'end of life care'. So far, it is not known how

  17. The Fontan pathway: What′s down the road?

    OpenAIRE

    Khambadkone Sachin

    2008-01-01

    The Fontan circulation results from routing of the systemic venous blood to the pulmonary circulation without a hydraulic source of a ventricle. Although a hypertrophied right atrium was thought to be essential for this circulation, the current form of the operation has neither the right atrium nor any valves in the venous circulation that is connected to the pulmonary arteries directly. Modifications in the operative model was one of the early steps in improving outcome. Use of fenestration,...

  18. Variable Myocardial Response to Load Stresses in Infants with Single Left Ventricular Anatomy: Influence of Initial Physiology and Surgical Palliative Strategy.

    Science.gov (United States)

    Horriat, Narges L; Deatsman, Sara L; Stelter, Jessica; Frommelt, Peter C; Hill, Garick D

    2016-12-01

    Initial surgical strategies in neonates with single left ventricular (LV) anatomy vary based on adequacy of pulmonary and systemic blood flow. Differing myocardial responses to these strategies, as reflected in indices of systolic function, ventricular size, and mass have not been well defined. We sought to evaluate single LV myocardial response to varied physiology and initial palliation and determine whether the response is consistent and predictable. Infants with single LV physiology were divided based on neonatal palliation: no palliation/PA band (NO); BT shunt only (BT); or Norwood procedure (NP). Echo measures were obtained at presentation, early post-bidirectional Glenn (BDG), late post-BDG follow-up, and post-Fontan procedure. Measures included ejection fraction, LV mass indexed to height(2.7) and end diastolic volume indexed to body surface area, and mass/volume ratio. The cohort included 38 children (13 NO, 13 BT, 12 NP). Ejection fraction was similar but depressed in all groups at all stages. LV mass was higher in the NP group than the BT group at early post-BDG (p = 0.03) and higher than both BT and NO groups (p < 0.01) at late post-BDG, but the difference was resolved by post-Fontan follow-up. The NP group had the most remarkable remodeling in LV size from BDG to Fontan, suggesting that volume unloading is most valuable in this subgroup. Ventricular remodeling can be identified by echocardiography in children with single LV physiology, despite variable initial surgical palliative strategies. Importantly, these initial surgical strategies do not result in significant differences after Fontan palliation during early childhood.

  19. Barriers to Access to Palliative Care

    Science.gov (United States)

    Hawley, Pippa

    2017-01-01

    Despite significant advances in understanding the benefits of early integration of palliative care with disease management, many people living with a chronic life-threatening illness either do not receive any palliative care service or receive services only in the last phase of their illness. In this article, I explore some of the reasons for failure to provide palliative care services and recommend some strategies to overcome these barriers, emphasizing the importance of describing palliative care accurately. I provide language which I hope will help health care professionals of all disciplines explain what palliative care has to offer and ensure wider access to palliative care, early in the course of their illness. PMID:28469439

  20. Knowledge of Palliative Care Among Nursing Students.

    Science.gov (United States)

    Ismaile, Samantha; Alshehri, Hanan H; Househ, Mowafa

    2017-01-01

    The aim of this study was to evaluate nursing undergraduate students' knowledge with regard to palliative care in Saudi Arabia. A quantitative descriptive research study was conducted by the use of validated tool. A total of 204 students were included in the study. There is little evidence in Saudi Arabia to demonstrate if nursing undergraduates receives education on palliative care. The results indicate that 57.9% of the nursing undergraduates had received educational sessions and 42.1% of nursing undergraduates did not. In conclusion, palliative care nursing education is crucial to improve quality of patient care in nursing practices. It is recommended that a palliative care education should be integrated within the nursing programme courses. Hence, in order to improve students' knowledge of palliative care, course content should cover the principles of palliative care as a part of any nursing bachelor programme.

  1. Paediatric palliative care: Theory to practice

    Directory of Open Access Journals (Sweden)

    Maryann Muckaden

    2011-01-01

    Full Text Available Paediatric palliative care is a holistic approach aimed at addressing the complex issues related to the care of children and families facing chronic life limiting illnesses. The needs of children are unique and often quite different from those of adults receiving palliative care. This review article outlines some of the salient features of paediatric palliative care which are relevant to all professionals caring for children with life limiting illnesses in their practice.

  2. Palliative sedation.

    Science.gov (United States)

    Eisenchlas, Jorge H

    2007-10-01

    Palliative care is a discipline that provides satisfactory symptom relief to most patients with advanced life-threatening disease. There remain circumstances, however, in which patients experience distressing symptoms and unbearable suffering that cannot be adequately relieved. In these situations palliative sedation may be valuable as a last resort. Palliative sedation is a controversial issue and research in this area is complex for ethical and practical reasons. A review of some critical aspects, giving special attention to those areas that require further research, is therefore timely. There is a dearth of evidence regarding sedation in the setting of palliative care. The literature contains many expert opinions and retrospective reports, but only a few prospective studies have been published. Terminology regarding sedation is confusing, indications and outcomes do not tend to be clearly reported, and no comparative studies to test drug effectiveness have been conducted. Consensus and innovative methodologies to enhance scientific knowledge are urgently needed in this area. This review addresses recent literature concerning definitions of palliative sedation and intolerable/refractory suffering, indications and drug use. The current state of the art is summarized and future lines of research are proposed.

  3. Palliative care

    Directory of Open Access Journals (Sweden)

    Mônica Estuque Garcia de Queiroz

    2012-09-01

    Full Text Available According to the World Health Organization (WHO, palliative care can be defined as active and totalcare measures that improve the life quality of patients with terminal diseases and their family/relatives, throughprevention and suffering relieve by means of early identification, adequate evaluation, and treatment of painand other physical, psychosocial and spiritual problems. This article deals with the attention of the occupationaltherapist in palliative care, as from the definition of this philosophy and its principles. The occupational therapist’spractice is described through the author’s theoretical and practical references. In palliative care, occupationaltherapy helps the patient and caregiver to deal with the difficulties mentioned and observed in order to achievegreater comfort, dignity and quality of life in the hospital or at home, in order to promote the maximum levelof independence and/or occupational performance with autonomy with the aim to improve the quality of life,despite the functional loss, cognitive, emotional and social.

  4. Visualization of flow structures in Fontan patients using 3-dimensional phase contrast magnetic resonance imaging

    National Research Council Canada - National Science Library

    Sundareswaran, Kartik S; Haggerty, Christopher M; de Zélicourt, Diane; Dasi, Lakshmi P; Pekkan, Kerem; Frakes, David H; Powell, Andrew J; Kanter, Kirk R; Fogel, Mark A; Yoganathan, Ajit P

    2012-01-01

    ...) using in vivo phase contrast magnetic resonance imaging (PC MRI). Sixteen single-ventricle patients were prospectively recruited at 2 leading pediatric institutions for PC MRI evaluation of their Fontan pathway...

  5. Extracardiac off-pump fontan completion for single ventricle with dextrocardia.

    Science.gov (United States)

    Goksel, Onur S; Gok, Emre; Tireli, Emin; Dayioglu, Enver

    2013-01-01

    Extracardiac off-pump is reported to result in better early hemodynamics and shorter mechanical ventilation periods. We present a case report of extracardiac off-pump Fontan in a 5-year-old girl with single ventricle and dextrocardia.

  6. Surgical palliation in patients with a single ventricle and dextrocardia.

    Science.gov (United States)

    Poh, Chin L; Xu, Mary; Galati, John C; Iyengar, Ajay J; Cheung, Michael; Brizard, Christian P; Konstantinov, Igor E; d'Udekem, Yves

    2014-10-01

    Dextrocardia is found in a significant proportion of patients undergoing a single-ventricle repair. Surgical outcomes in this cohort are unclear. The records of 41 consecutive patients with single-ventricle physiology and dextrocardia presenting in a single institution from 1990 to 2008 were reviewed. Of this cohort, 19 patients had heterotaxy syndrome. Twenty-five of the 41 patients had atrioventricular valve regurgitation (AVVR) on presentation (mild, 13; moderate, 9; severe, 3). One patient died before intervention. Initial surgical palliation was performed in 31 patients. Four patients died postoperatively and 4 interim deaths occurred between initial palliation and bidirectional cavopulmonary shunt (BCPS). Thirty of the surviving 32 patients underwent BCPS, with 2 perioperative deaths. There were 4 additional deaths before Fontan surgery. Twenty-two of the surviving 25 patients underwent a Fontan procedure. There was 1 postoperative mortality. Survival to the age of 15 years was 56% (95% confidence interval [CI], 39%-70%). Patients with moderate or severe regurgitation had higher mortality if they were managed conservatively rather than by surgery (5 of 6 vs 2 of 6; P=.24). Patients with bilateral BCPS had better operative outcomes and survival compared with peers with unilateral anastomosis (odds ratio, 27; P=.005; 95% CI, 2.7-269). The side of the systemic venous pathway did not seem to influence outcomes. Surgical outcomes of single-ventricle palliation seem poor in patients with dextrocardia. Aggressive management of congenital AVVR might improve the long-term prognosis. Copyright © 2014 The American Association for Thoracic Surgery. Published by Elsevier Inc. All rights reserved.

  7. What is palliative care?

    Science.gov (United States)

    Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease ...

  8. Hepatic pathology may develop before the Fontan operation in children with functional single ventricle: an autopsy study.

    Science.gov (United States)

    Schwartz, Matthew C; Sullivan, Lisa; Cohen, Meryl S; Russo, Pierre; John, Anitha S; Guo, Rong; Guttenberg, Marta; Rand, Elizabeth B

    2012-04-01

    Liver fibrosis has emerged as an important long-term complication of the Fontan operation. We aimed to describe liver histology at autopsy in patients who had undergone the Fontan operation and to determine whether patient variables are associated with the degree of fibrosis. A review was performed of all patients with a history of the Fontan operation who died and underwent autopsy at our institution from 1980 to 2009. Autopsy liver slides were evaluated independently by 2 pathologists. Twenty-two patients were studied. The median interval between Fontan and death was 20 days (range, 1 day-17.5 years). Portal fibrosis was observed in 20 (91%) patients and sinusoidal fibrosis was observed in 17 (77%) patients. Using simple linear regression, time from the Fontan operation was significantly associated with the degree of portal fibrosis on Ishak (P = .03) and modified Scheuer fibrosis (P = .02) scales. Significant portal fibrosis was observed in 8 (57%) of the 14 patients who died 30 days or less after the Fontan operation. In these 14 patients, severity of portal fibrosis was associated with length of hospitalization after pre-Fontan cardiac operations (P = .03) and pre-Fontan mean right atrial pressure (P = .04). At autopsy, hepatic fibrosis was commonly observed in patients who had undergone the Fontan operation. Portal fibrosis has been previously unrecognized in this population. Significant portal fibrosis occurred in most who died soon after the Fontan procedure and was associated with pre-Fontan morbidity. Hepatic disease in the single-ventricle population is multifactorial and may begin before the Fontan operation. Copyright © 2012 The American Association for Thoracic Surgery. Published by Mosby, Inc. All rights reserved.

  9. Role of Doppler echocardiography for cardiac output assessment in Fontan patients.

    Science.gov (United States)

    Egbe, Alexander; Khan, Arooj R; Khan, Sana F; Anavekar, Nandan S; Said, Sameh M; Young, Philip M; Akintoye, Emmanuel; Miranda, William R; Al-Otaibi, Mohamad N; Veldtman, Gruschen R; Connolly, Heidi M

    2018-01-01

    To determine (1) correlation between Doppler stroke volume index (SVI) and cardiac magnetic resonance imaging (CMRI) SVI and (2) association between Doppler SVI and Fontan-associated diseases (FAD) and Fontan failure. Review of Fontan patients who underwent same-day CMRI and transthoracic echocardiography (TTE), 2005 to 2015. We defined FAD as cardiac thrombus, protein-losing enteropathy, arrhythmia, and hospitalization for heart failure. Fontan failure was defined as Fontan conversion or revision, heart transplantation or listing, or death. Fifty-three patients with systemic left ventricle (LV) underwent 86 sets of TTE/CMRI. Mean (SD) age 31 (6) years. SVI (45 [16] vs 42 [13] mL/m 2 ), CI (3.0 [1.1] vs 2.8 [0.8] L min -1 m -2 ), and ejection fraction (53 [4]% vs 51 [5]%) were similar for both modalities (P>.05 for all). Doppler SVI correlated with CMRI (r=0.68; PDoppler SVI Doppler SVI (r=0.75; PDoppler SVI correlated with CMRI SVI in patients with systemic LV and systemic RV. The association between output measures (SVI and CI) and FAD were seen only in single LV patients (single RV patients not assessed for this outcome due to small numbers). An association between low Doppler CI and Fontan failure was suggested in a small number of single LV patients. Copyright © 2017 Elsevier Inc. All rights reserved.

  10. [Palliative care - also in geriatrics?].

    Science.gov (United States)

    Sandgathe Husebø, B; Husebø, S

    2001-10-01

    Red Cross Clinic is the largest geriatric center in Norway (240 beds). Major parts of the center are: long time geriatric ward (215 beds), rehabilitation and acute ward (25 beds), day clinic (45 patients) and a teaching and research unit. A palliative care unit (10 beds) will be opened in spring 2000. In mai 1998 a national project: Palliative care for the elderly was opened at our center. The projects main goal is to develop and support proper palliative care to all severe ill and dying patients in Norway. In a prospective study we examined 179 consecutive deaths between 1998 and 1999. Average age was 84.5. Major symptom problems were pain, dyspnoea, death-rattle and anxiety. In the last 24 hours 83% of the patients received opioids, 67% of the cases morphine (mean daily dosage 31.8 mg). 37% of the patients received scopolamine (mean daily dosage 0.8 mg), 12% benzodiazepines and 3% of the patients haloperidol. 152 (85%) of the deaths were expected, 27 (15%) unexpected. In 137 patients (77%) open, honest, frank communication with patient or their nearest kin regarding the imminent death was possible. In our experience it is a myth that the relatives want doctors to practise "maximal therapy". All old patients in geriatric clinics and nursing homes need palliative care. We have found no international textbooks of geriatrics with chapters on palliative care or textbooks on palliative care with chapters on the elderly. They need doctors and nurses who are properly trained and educated in palliative care. In most countries in Europe this training and education is not provided.

  11. Palliative Care in Obstetrics and Gynecology.

    Science.gov (United States)

    Lefkowits, Carolyn; Solomon, Caroline

    2016-12-01

    Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be offered concurrently with disease-directed therapies, including when the goal is cure. Obstetrics and gynecology patients for whom palliative care is most appropriate include women with gynecologic cancer and women with a fetus or neonate with a potentially life-limiting illness. Integration of palliative care for these patients offers both clinical and health care utilization benefits, including improved symptom management, improved quality of life, and high-value care. Palliative care can be provided by palliative care specialists (specialty palliative care) or by the team treating the life-limiting illness (primary palliative care), depending on the complexity of the need. Health care providers caring for patients with life-limiting illness, including obstetrician-gynecologists, must possess a basic primary palliative care skill set, including symptom management for common symptoms such as pain and nausea and communication skills such as breaking bad news. This skill set must be taught and evaluated during training and used consistently in practice to ensure that our patients receive truly comprehensive care.

  12. Palliative Surgery for Pseudomyxoma Peritonei.

    Science.gov (United States)

    Funder, J A; Jepsen, K V; Stribolt, K; Iversen, L H

    2016-06-01

    Pseudomyxoma peritonei is a rare disease causing peritoneal carcinomatosis. In patients with extensive carcinomatosis, curative treatment is unachievable. Palliative debulking therapy is the only treatment in relieving symptoms. We report our results from palliative debulking surgery at a national pseudomyxoma peritonei center in Denmark. From January 2007 to October 2012, we performed 27 palliative operations for pseudomyxoma peritonei with debulking at our institution. All patients were evaluated and found eligible for palliative treatment only. Patients were prospectively registered, while perioperative data were collected retrospectively from patient records. The majority of patients (n = 25) received an omentectomy (93%) as the primary procedure. In total, 17 (63%) received additional surgery. Median operative time was 88 min (range: 33-160 min). Median stay at the recovery ward was 6 h (2-288 h). Median hospital stay was 8 days (4-105 days). In all, 23 (85%) patients had no in-hospital complications, whereas 4 patients experienced complications (15%). Two of the complications were mild (Clavien-Dindo grade II), and two experienced severe complications (grade III and IV). Thirty-day mortality was 0%. Median survival was 3.0 years (0.2-6.2 years). Palliative debulking is a safe procedure with an acceptable morbidity and mortality offering immediate disease control. © The Finnish Surgical Society 2015.

  13. Anestesia en la operación de Fontan

    Directory of Open Access Journals (Sweden)

    Lincoln de la Parte Pérez

    2002-12-01

    Full Text Available La técnica de Fontan ofrece la primera operación fisiológica para la atresia tricuspídea (AT mediante la separación completa de las circulaciones sistémicas y pulmonar. Este proceder se basa en el principio de que la presión en la aurícula derecha es suficiente para garantizar un flujo sanguíneo adecuado a los pulmones, lo que hace innecesaria la función del ventrículo derecho. A partir de su introducción, existe una esperanza para los pacientes con un solo ventrículo y es un procedimiento cada vez más frecuente en el Servicio de Anestesia Cardiovascular. Esta realidad fue el motivo para presentar una revisión bibliográfica actualizada sobre la técnica anestésica que se debe emplear en este procedimiento quirúrgico.Fontan´s technique offers the first physiological operation for tricuspid atresia by complete separation of systemic and pulmonary circulation. This procedure is based on the principle that the right atrium pressure is enough to assure an adequate blood flow to the lungs, which makes the function of right ventricle unnecessary. After the introduction of this procedure, there is a hope for those patients with only one ventricle, therefore, this is an increasingly frequent technique applied in the cardiovascular anesthesia service. Such a reality was the main reason for presenting an updated literature review of the anesthetic technique that should be used in this surgical procedure.

  14. Palliative medicine review: prognostication.

    Science.gov (United States)

    Glare, Paul A; Sinclair, Christian T

    2008-01-01

    Prognostication, along with diagnosis and treatment, is a traditional core clinical skill of the physician. Many patients and families receiving palliative care want information about life expectancy to help plan realistically for their futures. Although underappreciated, prognosis is, or at least should be, part of every clinical decision. Despite this crucial role, expertise in the art and science of prognostication diminished during the twentieth century, due largely to the ascendancy of accurate diagnostic tests and effective therapies. Consequently, "Doctor, how long do I have?" is a question most physicians find unprepared to answer effectively. As we focus on palliative care in the twenty-first century, prognostication will need to be restored as a core clinical proficiency. The discipline of palliative medicine can provide leadership in this direction. This paper begins by discussing a framework for understanding prognosis and how its different domains might be applied to all patients with life limiting illness, although the main focus of the paper is predicting survival in patients with cancer. Examples of prognostic tools are provided, although the subjective assessment of prognosis remains important in the terminally ill. Other issues addressed include: the importance of prognostication in terms of clinical decision-making, discharge planning, and care planning; the impact of prognosis on hospice referrals and patient/family satisfaction; and physicians' willingness to prognosticate.

  15. Serial cardiac MRIs in adult Fontan patients detect progressive hepatic enlargement and congestion.

    Science.gov (United States)

    Lewis, Matthew J; Hecht, Elizabeth; Ginns, Jonathan; Benton, Joshua; Prince, Martin; Rosenbaum, Marlon S

    2017-03-01

    The progression of hepatic disease in adult Fontan patients is not well understood. They reviewed the experience with serial cardiac MRIs (CMR) in adult Fontan patients to determine if hepatic anatomic markers of prolonged Fontan exposure were present and if clinical predictors of progressive hepatic congestion could be identified. A retrospective cohort study of all adult Fontan patients who had undergone at least two CMRs was performed. Hepatic dimensions, inferior vena cava (IVC) size, right hepatic vein (RHV) size and spleen diameter were determined from images acquired at the time of clinically guided CMR. Two radiologists with expertise in hepatic imaging graded congestion and liver size independently using post-gadolinium contrast sequences. Twenty-seven patients met inclusion criteria. Over a mean time of 5.1 years between CMRs, there was a significant increase in mean lateral-medial hepatic dimension (P = .005), mean RHV diameter (P = .004), and mean splenic diameter (P = .001). Serial post-gadolinium imaging was available in 25/27 (93%) patients of which 15/27 (55%) showed evidence of progressive hepatic congestion across serial studies. Progressive hepatic congestion was associated with single ventricle ejection fraction (SVEF) less than 50% (P = .008), and larger indexed end-diastolic (EDVI) and end-systolic volume (ESVI). RHV diameter was the only anatomic variable significantly correlated with time from Fontan completion (P = .004). Serial CMRs detected progressive liver and hepatic vein enlargement in our cohort of adult Fontan patients over a mean time of 5.2 years. Progressive hepatic congestion occurs in a significant number of adult Fontan patients and may be associated with ventricular enlargement and decreased ventricular function by CMR. © 2016 Wiley Periodicals, Inc.

  16. A new multiparameter approach to computational simulation for Fontan assessment and redesign.

    Science.gov (United States)

    Marsden, Alison L; Reddy, V Mohan; Shadden, Shawn C; Chan, Frandics P; Taylor, Charles A; Feinstein, Jeffrey A

    2010-01-01

    Despite an abundance of prior Fontan simulation articles, there have been relatively few clinical advances that are a direct result of computational methods. We address a few key limitations of previous Fontan simulations as a step towards increasing clinical relevance. Previous simulations have been limited in scope because they have primarily focused on a single energy loss parameter. We present a multi-parameter approach to Fontan modeling that establishes a platform for clinical decision making and comprehensive evaluation of proposed interventions. Time-dependent, 3-D blood flow simulations were performed on six patient-specific Fontan models. Key modeling advances include detailed pulmonary anatomy, catheterization-derived pressures, and MRI-derived flow with respiration. The following performance parameters were used to rank patients at rest and simulated exercise from best to worst performing: energy efficiency, inferior and superior vena cava (IVC, SVC) pressures, wall shear stress, and IVC flow distribution. Simulated pressures were well matched to catheterization data, but low Fontan pressure did not correlate with high efficiency. Efficiency varied from 74% to 96% at rest, and from 63% to 91% with exercise. Distribution of IVC flow ranged from 88%/12% (LPA/RPA) to 53%/47%. A "transcatheter" virtual intervention demonstrates the utility of computation in evaluating interventional strategies, and is shown to result in increased energy efficiency. A multiparameter approach demonstrates that each parameter results in a different ranking of Fontan performance. Ranking patients using energy efficiency does not correlate with the ranking using other parameters of presumed clinical importance. As such, current simulation methods that evaluate energy dissipation alone are not sufficient for a comprehensive evaluation of new Fontan designs.

  17. Contractility-afterload mismatch in patients with protein-losing enteropathy after the Fontan operation.

    Science.gov (United States)

    Ozawa, Hideto; Ueno, Takayoshi; Iwai, Shigemitsu; Kawata, Hiroaki; Nishigaki, Kyouichi; Kishimoto, Hidefumi; Sawa, Yoshiki

    2014-10-01

    This study aimed to clarify the relationship between onset of protein-losing enteropathy (PLE) and Fontan circulation, with special reference to the development of contractility-afterload mismatch. The PLE group comprised 9 patients who experienced PLE after undergoing the Fontan operation, and the control group consisted of 32 patients had did not experienced PLE more than 10 years after the Fontan operation. The study compared the pre- and postoperative values of arterial elastance (Ea), end-systolic elastance (Ees), and contractility-afterload mismatch (Ea/Ees). Furthermore, the variations in the values were examined during the preoperative, postoperative, and midterm postoperative periods in seven PLE patients who underwent cardiac catheterization at the onset of PLE and during the pre- and postintervention periods in three PLE patients who underwent surgical intervention to improve the Fontan circulation after the onset of PLE. Comparison of the values obtained before and after Fontan operations showed that the Ea values increased significantly in the PLE group. However, the pre- and postoperative Ees values did not differ in the two groups. During the postoperative period, Ea/Ees increased significantly, and the Ea and Ea/Ees values increased continuously until the onset of PLE in the PLE group. In the patients who underwent surgical intervention to improve the Fontan circulation after the onset of PLE, the Ea/Ees decreased significantly, and the serum albumin levels improved after the intervention. Contractility-afterload mismatch, mainly caused by the increase in the afterload of the systemic ventricle, may have an important role in the development of PLE after the Fontan operation.

  18. Immune Abnormalities in Fontan Protein-Losing Enteropathy: A Case-Control Study.

    Science.gov (United States)

    Magdo, H Sonali; Stillwell, Terri L; Greenhawt, Matthew J; Stringer, Kathleen A; Yu, Sunkyung; Fifer, Carlen G; Russell, Mark W; Schumacher, Kurt R

    2015-08-01

    To comprehensively characterize the immunologic characteristics of patients with protein-losing enteropathy (PLE) post-Fontan and compare them with patients without PLE post-Fontan. Patients with PLE post-Fontan and age-matched controls post-Fontan were prospectively studied with laboratory markers of immune function. Infectious history was obtained by interview and chart review. The groups' demographics, cardiac history, immune characteristics, and infection history were compared using appropriate 2-group statistics. A total of 16 patients enrolled (8 patients with PLE and 8 controls). All patients with PLE had lymphopenia compared with 25% of controls (P = .01). All patients with PLE had markedly depressed CD4 T cell counts (median 58 cells/μL) compared with controls (median 450 cells/μL, P = .0002); CD4% was also low in the PLE group (12.3%) and normal in control (36.9%, P = .004). Both groups had mildly depressed CD8 T cells and normal to slightly elevated natural killer and B-cell subsets. A majority of patients with PLE (62.5%) had negative titers to measles, mumps, and rubella vaccination, compared with no control Fontan with a negative titer (P = .03). Despite profoundly low CD4 counts, the frequency of infection was not different between groups with no reported opportunistic infections. Patients with Fontan-associated PLE have extensive quantitative immune abnormalities, particularly CD4 deficiency. These immune abnormalities are similar to those found in non-Fontan patients with PLE caused by intestinal lymphangiectasia. Copyright © 2015 Elsevier Inc. All rights reserved.

  19. Palliative Care In Romania.

    Science.gov (United States)

    Mosoiu, Daniela; Mitrea, Nicoleta; Dumitrescu, Malina

    2017-08-17

    Hospice Casa Sperantei has been pioneering palliative care development in Romania since 1992. The have developed specialist palliative care services in home-based settings, inpatient units, day care centers and as hospital support teams. They have provided national and international education programs for professionals in the palliative care field, as well as promoting palliative care integration in the healthcare system. Legislative improvements were adopted including funding mechanisms for the reimbursement of palliative care services through the health insurance funds, review of opioid policy, and quality standards of care. By the end of 2015, Romania had 115 specialist palliative care services (78 palliative care inpatient units, 24 home-based palliative care services, 5 outpatient palliative care clinics, 4 day care centers and 4 hospital support teams). A palliative care subspecialty for doctors was recognized as early as 2000, and a multidisciplinary Master's Degree program has been available at Transilvania University since 2010, when the first palliative care academic position was established. Nursing education includes mandatory palliative care modules in nursing schools. For coordinated development of palliative care at the national level a national strategy was proposed defining three levels of palliative care provision, local, district and national. The implementation of the palliative care strategy is partially funded through a World Bank loan. Copyright © 2017. Published by Elsevier Inc.

  20. Experimental characterization of powered Fontan hemodynamics in an idealized total cavopulmonary connection model

    Science.gov (United States)

    Kerlo, Anna-Elodie M.; Delorme, Yann T.; Xu, Duo; Frankel, Steven H.; Giridharan, Guruprasad A.; Rodefeld, Mark D.; Chen, Jun

    2013-08-01

    A viscous impeller pump (VIP) based on the Von Karman viscous pump is specifically designed to provide cavopulmonary assist in a univentricular Fontan circulation. The technology will make it possible to biventricularize the univentricular Fontan circulation. Ideally, it will reduce the number of surgeries required for Fontan conversion from three to one early in life, while simultaneously improving physiological conditions. Later in life, it will provide a currently unavailable means of chronic support for adolescent and adult patients with failing Fontan circulations. Computational fluid dynamics simulations demonstrate that the VIP can satisfactorily augment cavopulmonary blood flow in an idealized total cavopulmonary connection (TCPC). When the VIP is deployed at the TCPC intersection as a static device, it stabilizes the four-way flow pattern and is not obstructive to the flow. Experimental studies are carried out to assess performance, hemodynamic characteristics, and flow structures of the VIP in an idealized TCPC model. Stereoscopic particle image velocimetry is applied using index-matched blood analog. Results show excellent performance of the VIP without cavitation and with reduction of the energy losses. The non-rotating VIP smoothes and accelerates flow, and decreases stresses and turbulence in the TCPC. The rotating VIP generates the desired low-pressure Fontan flow augmentation (0-10 mmHg) while maintaining acceptable stress thresholds.

  1. Pediatric Palliative Care Initiative in Cambodia.

    Science.gov (United States)

    Çeliker, Mahmut Yaşar; Pagnarith, Yos; Akao, Kazumi; Sophearin, Dim; Sorn, Sokchea

    2017-01-01

    Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives.

  2. Pediatric Palliative Care Initiative in Cambodia

    Directory of Open Access Journals (Sweden)

    Mahmut Yaşar Çeliker

    2017-07-01

    Full Text Available Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives.

  3. Hybrid Palliation for Interrupted Aortic Arch With Small Aortic Valve.

    Science.gov (United States)

    Uno, Yoshimasa; Masuoka, Ayumu; Hotoda, Kentarou; Katogi, Toshiyuki; Suzuki, Takaaki

    2017-05-01

    Open heart surgery for interrupted aortic arch in the neonatal period is still a high-risk procedure related in part to patient factors such as low birth weight, other morphologic anomalies, and, especially, small aortic valve size. Recently, we performed hybrid palliation with bilateral pulmonary artery banding and ductal stenting as the first-stage palliation for such cases. In this study, the outcomes of this procedure were examined. Six cases of interrupted aortic arch with a small aortic valve underwent the hybrid procedure in the neonatal period in our institute from 2010 to 2015 (mean age: 6.8 days, mean body weight: 3.2 kg, mean z score of the aortic valve annulus: -8.3). Their postoperative clinical courses and results of the second-stage surgery were evaluated. No mortality or severe morbidity was seen in association with initial hybrid palliation. Five of six patients were discharged from the hospital; the one exception had a significant urinary tract anomaly. None needed an additional catheter intervention or surgical procedure postoperatively. All surviving patients underwent second-stage surgery; three had biventricular repair by the conventional method or Damus-Kaye-Stansel anastomosis with the Rastelli procedure and the other three proceeded toward staged Fontan reconstruction. Growth of the aortic valve was seen in four patients, and increased indexed left ventricle volume was recognized in one after the palliation. Hybrid palliation could be useful not only to avoid high-risk neonatal surgery but also to allow for eventual selection of the second-stage surgery based on the observations of potential interval development of left ventricular structures.

  4. The Lymphatic System: The Achilles Heel of the Fontan-Kreutzer Circulation.

    Science.gov (United States)

    Kreutzer, Christian; Kreutzer, Guillermo

    2017-09-01

    In spite of excellent long term survival the Fontan Kreutzer procedure commonly presents late failure due to end-organ damage. Several advances have been described to refine single ventricle management and surgical techniques. However, very little research has been dedicated to the lymphatic circulation in the precarious Fontan hemodynamic state. The lymphatic circulation is clearly affected since there is increased lymph production, which requires to be drained at a similar or higher pressure than it is produced, commonly resulting in chronic lymphedema. Chronic lymphedema induces fibrosis and end-organ failure even in normal circulation. Diverting lymph drainage to the low-pressured systemic atrium in Fontan may represent a valid alternative for the treatment of devastating complications as protein-losing enteropathy and plastic bronchitis and may prevent or decrease the development of end-organ fibrosis or failure.

  5. Creating a Fontan fenestration in a child with dextrocardia and interrupted inferior vena cava

    Directory of Open Access Journals (Sweden)

    Pradeepkumar Charlagorla

    2016-01-01

    Full Text Available Plastic bronchitis is a rare life-threatening complication of the Fontan operation. Transcatheter Fontan fenestration can ameliorate symptoms by decompressing elevated venous pressures. Transcatheter creation of a fenestration can be technically challenging in cases with complex venous anatomy. We report a case of a 5-year-old boy with heterotaxy, dextrocardia with unbalanced atrioventricular canal (AVC, atrial and visceral situs inversus, left-sided superior vena cava (SVC, and left-sided interrupted inferior vena cava (IVC with azygos continuation. With few modifications to the equipment, a successful Fontan fenestration with stent implantation was performed via transjugular approach. At 2-year follow-up, his symptoms of plastic bronchitis improved significantly.

  6. Palliative care in the intensive care unit.

    Science.gov (United States)

    Restau, Jame; Green, Pamela

    2014-12-01

    Most patients who receive terminal care in the intensive care setting die after withdrawing or limiting of life-sustaining measures provided in the intensive care setting. The integration of palliative care into the intensive care unit (ICU) provides care, comfort, and planning for patients, families, and the medical staff to help decrease the emotional, spiritual, and psychological stress of a patient's death. Quality measures for palliative care in the ICU are discussed along with case studies to demonstrate how this integration is beneficial for a patient and family. Integrating palliative care into the ICU is also examined in regards to the complex adaptive system. Copyright © 2014 Elsevier Inc. All rights reserved.

  7. Palliative Care Questions and Answers (Hospice Care Comparison)

    Science.gov (United States)

    ... Grief & Loss Resources Hospice and Palliative Care > Palliative Care Palliative Care Palliative Care Questions and Answers Palliative Care Questions and Answers Question Palliative Care Hospice Care ...

  8. Vagal reactivation after exercise and cardiac autonomic nervous activity in adult Fontan patients without pacemakers.

    Science.gov (United States)

    Eser, Prisca; Herzig, David; Vogt, Marcel; Stämpfli, Roger; Trovato, Moreno; Olstad, Daniela Schäfer; Trachsel, Lukas; Deluigi, Christina; Wustmann, Kerstin; Greutmann, Matthias; Tobler, Daniel; Stambach, Dominik; Schmid, Jean-Paul; Schwerzmann, Markus; Wilhelm, Matthias

    2016-10-01

    Patients with Fontan circulation have reduced heart rate variability (HRV) in supine position. However, neither cardiac autonomic nervous activity (CANA) in response to orthostatic challenge nor vagal reactivation by means of heart rate (HR) recovery after cessation of exercise have previously been investigated in Fontan patients. The aim of this study was to compare HRV in supine and standing position, as well as HR recovery between Fontan patients and healthy controls. Eight Fontan patients (4 male/4 female) without pacemakers and 12 healthy volunteers (5m/7f) with minimum age of 18years were recruited. HR was measured by Holter-electrocardiogram. HRV was measured in supine position and after orthostatic challenge. The power of the high frequency (HF: 0.15Hz-0.4Hz) and low frequency (LF: 0.04Hz-0.15Hz) bands was analysed by fast-Fourier transformation. HR recovery was determined at 30s and 60s after termination of a maximal exercise test. In both supine and standing position, total power, HF and LF power were reduced in Fontan patients compared to controls (by approximately a factor of 10) while there was no differences in LF/HF power ratio. Response to orthostatic challenge was blunted in absolute power but normal in relative power. HR recovery was not different between groups. Fontan patients have greatly reduced HRV, a blood-pressure dependent marker of CANA, but normal HR recovery, a blood pressure independent marker of vagal reactivation, suggesting that vagal activity may be normal, and only vascular capacitance reduced. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  9. Administration of chemotherapy with palliative intent in the last 30 days of life: the balance between palliation and chemotherapy.

    Science.gov (United States)

    Zdenkowski, N; Cavenagh, J; Ku, Y C; Bisquera, A; Bonaventura, A

    2013-11-01

    Appropriately timed cessation of chemotherapy is an important aspect of good quality palliative care. There is wide variation in the reported rates of chemotherapy administration within the last 30 days of life. To identify predictors of death within 30 days of receiving palliative chemotherapy, and to propose a standard definition by which oncologists and cancer centres can be compared. Patients who received palliative chemotherapy at a regional cancer centre and its rural outreach unit between 2009 and 2011 were included. An adjusted logistic regression model, including all variables, was fit to identify predictors of death within 30 days of receiving palliative chemotherapy. Over a 3-year period, 1131 patients received palliative chemotherapy, 138 (12%) died within 30 days of receiving palliative chemotherapy. Predictors of death within 30 days of palliative chemotherapy were: less than 30 days contact with palliative care (odds ratio 3.30 (95% confidence interval 2.04-5.34), P chemotherapy in the last 30 days of life were more likely to be male and have a shorter duration of palliative care team involvement. In this study, the observed rate of death within 30 days of chemotherapy is within the range of published data. It is recommended that a standard definition be used to benchmark medical oncology centres and individual oncologists, and to allow comparison over time. © 2013 The Authors; Internal Medicine Journal © 2013 Royal Australasian College of Physicians.

  10. Heart failure - palliative care

    Science.gov (United States)

    ... medlineplus.gov/ency/patientinstructions/000365.htm Heart failure - palliative care To use the sharing features on this page, ... you may want to discuss the option of palliative or comfort care with your providers and loved ones. Many people ...

  11. Palliative or Comfort Care

    Science.gov (United States)

    ... and communication among family members and providers of care. Palliative care can improve your quality of life when ... control Need help understanding your situation and coordinating care PALLIATIVE OR COMFORT CARE Often a team of specialists ...

  12. Palliative care - managing pain

    Science.gov (United States)

    ... this page: //medlineplus.gov/ency/patientinstructions/000532.htm Palliative care - managing pain To use the sharing features on this page, please enable JavaScript. Palliative care is a holistic approach to care that focuses ...

  13. 'The ICECAP-SCM tells you more about what I'm going through': A think-aloud study measuring quality of life among patients receiving supportive and palliative care.

    Science.gov (United States)

    Bailey, Cara; Kinghorn, Philip; Orlando, Rosanna; Armour, Kathy; Perry, Rachel; Jones, Louise; Coast, Joanna

    2016-07-01

    The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. To determine the feasibility of completing ICECAP-Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. Participants were asked to 'think aloud' while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete. © The Author(s) 2016.

  14. Mechanical circulatory support of a univentricular Fontan circulation with a continuous axial-flow pump in a piglet model.

    Science.gov (United States)

    Wei, Xufeng; Sanchez, Pablo G; Liu, Yang; Li, Tieluo; Watkins, A Claire; Wu, Zhongjun J; Griffith, Bartley P

    2015-01-01

    Despite the significant contribution of the Fontan procedure to the therapy of complex congenital heart diseases, many patients progress to failure of their Fontan circulation. The use of ventricular assist devices to provide circulatory support to these patients remains challenging. In the current study, a continuous axial-flow pump was used to support a univentricular Fontan circulation. A modified Fontan circulation (atrio-pulmonary connection) was constructed in six Yorkshire piglets (8-14 kg). A Dacron conduit (12 mm) with two branches was constructed to serve as a complete atrio-pulmonary connection without the use of cardiopulmonary bypass. The Impella pump was inserted into the conduit through an additional Polytetrafluoroethylene (PTFE) graft in five animals. Hemodynamic data were collected for 6 hours under the supported Fontan circulation. The control animal died after initiating the Fontan circulation independent of resuscitation. Four pump supported animals remained hemodynamically stable for 6 hours with pump speeds between 18,000 rpm and 22,000 rpm (P1-P3). Oxygen saturation was maintained between 95% and 100%. Normal organ perfusion was illustrated by blood gas analysis and biochemical assays. A continuous axial-flow pump can be used for temporal circulatory support to the failing Fontan circulation as "bridge" to heart transplantation or recovery.

  15. [Neonatal palliative care at home: Contribution of the regional pediatric palliative care team].

    Science.gov (United States)

    Cojean, N; Strub, C; Kuhn, P; Calvel, L

    2017-02-01

    The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks. Copyright © 2016 Elsevier Masson SAS. All rights reserved.

  16. Paediatric palliative medicine

    African Journals Online (AJOL)

    end-of-life dilemmas in children, communication with children, counselling, breaking bad news, pain control, and self-care, and have been written by palliative care professionals currently working in paediatric palliative medicine in South Africa. There are few specialist services for children's palliative care in South Africa, ...

  17. Paediatric palliative medicine

    African Journals Online (AJOL)

    Palliative Care Network (ICPCN), based in South. Africa, and the United Nations Children's Fund ... management; funding constraints and attendant poor integration of palliative care into the health system'.[1]. In South Africa ... Palliative care can be provided in tertiary care facilities, in community health centres and even in ...

  18. Primary palliative care for heart failure: what is it? How do we implement it?

    Science.gov (United States)

    Gelfman, Laura P; Kavalieratos, Dio; Teuteberg, Winifred G; Lala, Anuradha; Goldstein, Nathan E

    2017-09-01

    Heart failure (HF) is a chronic and progressive illness, which affects a growing number of adults, and is associated with a high morbidity and mortality, as well as significant physical and psychological symptom burden on both patients with HF and their families. Palliative care is the multidisciplinary specialty focused on optimizing quality of life and reducing suffering for patients and families facing serious illness, regardless of prognosis. Palliative care can be delivered as (1) specialist palliative care in which a palliative care specialist with subspecialty palliative care training consults or co-manages patients to address palliative needs alongside clinicians who manage the underlying illness or (2) as primary palliative care in which the primary clinician (such as the internist, cardiologist, cardiology nurse, or HF specialist) caring for the patient with HF provides the essential palliative domains. In this paper, we describe the key domains of primary palliative care for patients with HF and offer some specific ways in which primary palliative care and specialist palliative care can be offered in this population. Although there is little research on HF primary palliative care, primary palliative care in HF offers a key opportunity to ensure that this population receives high-quality palliative care in spite of the growing numbers of patients with HF as well as the limited number of specialist palliative care providers.

  19. Cardiovascular, obstetric and neonatal outcomes in women with previous fontan repair.

    Science.gov (United States)

    Bonner, S J; Asghar, O; Roberts, A; Vause, S; Clarke, B; Keavney, B

    2017-12-01

    To determine cardiovascular, obstetric and neonatal outcomes of pregnancies in women who have a Fontan circulation. A retrospective case note review of all women with a Fontan circulation who attended the joint obstetric cardiac antenatal clinic at St Mary's Hospital, Manchester (UK) between 2004 and 2016 was performed. In total, there were 19 pregnancies in 9 women with a history of Fontan repair. 23 women with univentricular physiology attended in this time period. 10 pregnancies (53%) resulted in live births; 1 in a stillbirth at 31 weeks gestation and 8 in miscarriage. Cardiovascular complications occurred in 2 pregnancies (11%). There were no thrombotic events, arrhythmias, myocardial infarction, or endocarditis in the antenatal or postnatal period. Obstetric complications included miscarriage (26% first trimester, 16% second trimester), along with premature delivery (24-36 +6 ) (80%) and fetal growth restriction (70%). The majority of women were delivered by caesarean section (60%). Women who become pregnant following a Fontan repair carry an increased risk of cardiovascular complications. Fetal and neonatal complication rates are high and emphasize the importance of thorough, multidisciplinary, pre-conceptual assessment and counseling to allow patients to make informed decisions regarding future pregnancy. Crown Copyright © 2017. Published by Elsevier B.V. All rights reserved.

  20. Percutaneous transthoracic computed tomography-guided AICD insertion in a patient with extracardiac Fontan conduit.

    LENUS (Irish Health Repository)

    Murphy, Darra T

    2011-02-01

    Percutaneous pulmonary venous atrial puncture was performed under computed tomography guidance to successfully place an automated implantable cardiac defibrillator into a 26-year-old patient with extracardiac Fontan conduit who had presented with two out-of-hospital cardiac arrests. The procedure avoided the need for lead placement at thoracotomy.

  1. CT findings of plastic bronchitis in children after a Fontan operation

    Energy Technology Data Exchange (ETDEWEB)

    Goo, Hyun Woo [University of Ulsan College of Medicine, Department of Radiology and Research Institute of Radiology, Asan Medical Center, Seoul (Korea); Jhang, Won Kyoung; Kim, Young Hwee; Ko, Jae Kon; Park, In Sook [University of Ulsan College of Medicine, Department of Pediatric Cardiology, Asan Medical Center, Seoul (Korea); Park, Jeong-Jun; Yun, Tae-Jin; Seo, Dong-Man [University of Ulsan College of Medicine, Department of Pediatric Cardiac Surgery, Asan Medical Center, Seoul (Korea)

    2008-09-15

    Plastic bronchitis is a rare cause of acute obstructive respiratory failure in children. Life-threatening events are much more frequent in patients with repaired cyanotic congenital heart disease, and most frequent following a Fontan operation. Commonly, the diagnosis is not made until bronchial casts are expectorated. Detailed CT findings in plastic bronchitis have not been described. To describe the CT findings in plastic bronchitis in children after a Fontan operation. Three children with plastic bronchitis after a Fontan operation were evaluated by chest CT. Bronchial casts were spontaneously expectorated and/or extracted by bronchoscopy. Airway and lung abnormalities seen on CT were analyzed in the three children. CT demonstrated bronchial casts in the central airways with associated atelectasis and consolidation in all children. The affected airways were completely or partially obstructed by the bronchial casts without associated bronchiectasis. The airway and lung abnormalities rapidly improved after removal of the bronchial casts. CT can identify airway and lung abnormalities in children with plastic bronchitis after a Fontan operation. In addition, CT can be used to guide bronchoscopy and to monitor treatment responses, and thereby may improve clinical outcomes. (orig.)

  2. Palliative Care in Kazakhstan.

    Science.gov (United States)

    Kunirova, Gulnara; Shakenova, Ainur

    2018-02-01

    In Kazakhstan, like most ex-Soviet Union countries palliative care began in the late 1990s with the opening of the Almaty Hospice in 1999. Since that time, several palliative care services have opened in urban centers, but there is little coverage in rural areas. Palliative care has grown because of the collaborative work of Parliament leaders, Ministry of Health, local governments officials, Public Health Higher School, National Center for Health Development, academic medical institutions, oncology and palliative care experts, NGOs, Soros Foundation Kazakhstan, and international experts. A National Palliative Care Strategy provides the legislative framework that mandates the components of palliative that must be available at no cost for patients living with cancer. Palliative care courses are provided in several of the medical universities and nursing schools with practical training in local hospices who also offer seminars each year to practicing health care professionals. There is no "palliative care" or "palliative medicine" specialty in the national classifier of specialties. There are a number of palliative care specialists who participated in various training courses outside Kazakhstan. Oral morphine is not registered or available in the country, and patients must depend on injectable opioids or patches. Going forward, additional policies, increased public awareness, education of health care professionals, access to oral opioids, and more inpatient, home care, and day care services are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  3. Cardiac Palliative Medicine.

    Science.gov (United States)

    Barrett, Todd

    2017-10-01

    Heart failure is an illness with high morbidity and mortality that affects 5.7 million Americans. As advanced heart therapies become more prevalent care for patients and families is becoming more complex. The American Heart Association has released a policy statement recommending continuous, high-quality access to palliative care for all patients with heart failure, and the Center for Medicare Services requires palliative care involvement in mechanical circulatory support teams. The National Quality Forum developed eight domains of palliative care that are required for high-quality delivery of comprehensive palliative care. This article assesses each domain and how it pertains to evolving care of patients with advanced heart failure. Leadership from heart failure teams should review the domains of palliative care to ensure they are improving primary palliative care skills as well as identifying areas needed to improve funding so that patients have access to comprehensive specialty level palliative care.

  4. Sildenafil Increases Systemic Saturation and Reduces Pulmonary Artery Pressure in Patients with Failing Fontan Physiology.

    Science.gov (United States)

    Morchi, Gira S; Ivy, D Dunbar; Duster, Mark C; Claussen, Lori; Chan, Kak-Chen; Kay, Joseph

    2009-04-01

    OBJECTIVE: The purpose of this study was to investigate the effect of sildenafil in patients with failing Fontan physiology. DESIGN: A retrospective chart review was performed to compare history and available data in patients with Fontan circulations before and after starting sildenafil. The paired and unpaired Student's t-tests were used for statistical analyses. PATIENTS: Six patients at our institution with Fontan physiology, persistent symptoms of cyanosis or effusion, and poor hemodynamics as measured in the catheterization laboratory were placed on sildenafil. One patient was not included in the analysis because of insufficient length of treatment. All patients had symptoms of failing Fontan hemodynamics with either persistent cyanosis or effusions. In this group, the mean pulmonary artery pressure was greater than 15 mm Hg (17.4 ± 1.5 mm Hg) with mean estimated pulmonary vascular resistance of 3.5 ± 1.0 Wood units × m(2) prior to starting sildenafil. RESULTS: Sildenafil significantly increased the systemic arterial oxyhemoglobin saturation in this group (82.8 ± 7.3% pre-treatment vs. 91.0 ± 5.5% post-treatment, P = .017). In the four out of five patients who have had follow-up catheterizations, there was a significant decrease in pulmonary artery pressure (17.4 ± 1.5 mm Hg pre-treatment vs. 13.8 ± 2.1 mm Hg post-treatment, P = .018) and in estimated pulmonary vascular resistance pre- and post-sildenafil treatment (3.5 ± 1.0 Wood units × m(2) pre-treatment vs. 2.0 ± 0.4 Wood units × m(2) post-treatment, P = .031). CONCLUSIONS: Sildenafil may be a useful adjunct to therapy in patients with failing Fontan physiology likely through its function as a pulmonary vasodilator.

  5. Portal and sinusoidal fibrosis are common on liver biopsy after Fontan surgery.

    Science.gov (United States)

    Schwartz, Matthew C; Sullivan, Lisa M; Glatz, Andrew C; Rand, Elizabeth; Russo, Pierre; Goldberg, David J; Rome, Jonathan J; Cohen, Meryl S

    2013-01-01

    Hepatic fibrosis is an important complication after Fontan surgery in patients with single-ventricle congenital heart disease. Few reports of hepatic histology in these patients exist, and sinusoidal fibrosis has been described. We aimed to characterize fibrosis at liver biopsy procedure in patients with previous Fontan surgery and to identify patient variables associated with the degree of fibrosis. All patients who had previous Fontan surgery and who subsequently underwent liver biopsy at our institution between January 1990 and July 2010 were identified. For each biopsy specimen, portal and sinusoidal fibrosis were graded and medical records reviewed. Biopsy specimens from 13 patients were examined; the median time from Fontan surgery to liver biopsy procedure was 16.9 years (range 6.9-25). At the most recent biopsy procedure, 12 patients (92 %) had evidence of portal fibrosis, including 1 patient with portal-based cirrhosis. Thirteen patients (100 %) had at least some degree of sinusoidal fibrosis, including 1 patient with centrilobular-based cirrhosis. Lower platelet count was associated with greater degree of portal fibrosis by ordinal regression (odds ratio 0.84, P = 0.04), and patients with no or mild portal fibrosis had significantly higher platelet counts compared with those with moderate or severe portal disease (278 ± 78 K vs. 160 ± 46 K, P = 0.005). Four patients underwent serial biopsy procedures; portal fibrosis was progressed in 3 patients, and sinusoidal fibrosis was progressed in 3 patients. After Fontan surgery, portal and sinusoidal fibrosis are common at liver biopsy and can progress over time. Lower platelet count may represent a marker of portal-based disease in these patients.

  6. Effect of respiration on cardiac filling at rest and during exercise in Fontan patients: A clinical and computational modeling study

    Directory of Open Access Journals (Sweden)

    Alexander Van De Bruaene

    2015-12-01

    Conclusion: In Fontan patients, inspiration resulted in increased ventricular filling at rest and during exercise. Results were confirmed using a computational model indicating a phased time delay between peak SV and peak caval vein flow.

  7. Are Undergraduate Nurses Taught Palliative Care during Their Training?

    Science.gov (United States)

    Lloyd-Williams, Mari; Field, David

    2002-01-01

    Responses from 46 of 108 nurse educators in the United Kingdom indicated that diploma students received a mean of 7.8 hours and degree students 12.2 hours of palliative care training. Although 82% believed it should be a core component, 67% had difficulty finding qualified teachers. Palliative care knowledge was not formally assessed in most…

  8. Primary palliative care clinic pilot project demonstrates benefits of a nurse practitioner-directed clinic providing primary and palliative care.

    Science.gov (United States)

    Owens, Darrell; Eby, Kerry; Burson, Sean; Green, Meghan; McGoodwin, Wendy; Isaac, Margaret

    2012-01-01

    The purpose of the Primary Palliative Care Pilot Project was to determine if patients with a life-limiting illness who receive their primary care and palliative care from a consistent provider via a nurse practitioner (NP)-founded and-directed Primary Palliative Care Clinic at a public hospital would have improved symptom management and decreased emergency department utilization over time. All patients followed in the Harborview Primary Palliative Care Clinic from January to March 2010. The results of this project demonstrate that patients with a life-limiting illness who receive their primary care and palliative care in an NP-founded and -directed Primary Palliative Care Clinic have decreased utilization of the emergency department, and some experience improvement in symptom assessment scores. Palliative care providers and administrators should explore opportunities to expand outpatient palliative care clinics with an emphasis on primary care and continuity of care. NPs by experience and education are ideally suited to manage both primary and palliative care needs for people at the end of life. ©2011 The Author(s) Journal compilation ©2011 American Academy of Nurse Practitioners.

  9. Hospice and Palliative Nurses Association

    Science.gov (United States)

    ... to Submit an Abstract Writing Educational Objectives Palliative Care APRN Fellowships Chapter Education Grants Individual Education Scholarships Official Journals Journal of Hospice and Palliative Nursing Journal of Palliative Medicine Certification ...

  10. Satisfaction with palliative care after stroke: a prospective cohort study.

    Science.gov (United States)

    Blacquiere, Dylan; Bhimji, Khadija; Meggison, Hilary; Sinclair, John; Sharma, Michael

    2013-09-01

    The determinants of satisfaction for families of acute stroke patients receiving palliative care have not been extensively studied. We surveyed families to determine how they perceived palliative care after stroke. Families of patients palliated after ischemic stroke, intracerebral, or subarachnoid hemorrhage were approached. Four weeks after the patient's death, families were administered the After-Death Bereaved Family Member Interview to determine satisfaction with the care provided. Fifteen families participated. Families were most satisfied with participation in decision making and least satisfied with attention to emotional needs. In stroke-specific domains, families had less satisfaction with artificial feeding, hydration, and communication. Overall satisfaction was high (9.04 out of 10). Families of patients receiving palliative care at our institution showed generally high satisfaction with palliation after stroke; specific domains were identified for improvement. Further study in larger populations is required.

  11. Palliative Care in Moldova.

    Science.gov (United States)

    Gherman, Liliana; Pogonet, Vadim; Soltan, Viorel; Isac, Valerian

    2018-02-01

    The article describes the important steps of palliative care development in Moldova, the current status, main achievements and challenges to be addressed in the future. It covers background information, policy development, medicines access and availability, education, and training, as well as services' provision. Palliative care development in Moldova registered real progress in spite of frequent political changes at governmental levels and difficulties to ensure the continuity of the development process during the last 10 years. However, the unmet need for palliative care for patients with life-limiting illnesses from different disease and age groups remains high. Further effort is needed to increase the availability and access to opioid analgesics and other essential palliative care medications. Government commitment and support, together with adequate funding, trained and educated health care professionals, and easy access to and availability of medicines, are essential to ensure the successful implementation of palliative care services nationwide, and to deliver the most appropriate qualitative palliative care for patients. To speed up palliative care development, a national strategy on palliative care development should be considered. The authors took part and continue to be involved in different ways in palliative care development in the country. Copyright © 2017. Published by Elsevier Inc.

  12. Palliative care and neurology

    Science.gov (United States)

    Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

    2014-01-01

    Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027

  13. Palliative Care in Dementia.

    Science.gov (United States)

    Aquilina, Francesca Falzon; Agius, Mark

    2015-09-01

    The Dementias are common neurodegenerative diseases which gradually deteriorate and eventually become fatal. However, hospice care is usually made available to patients suffering from Cancer, while patients who suffer from other chronic conditions such as dementia are not usually offered such care. However the lessons which have been learnt regarding hospice palliative care could be applied with some modification to the care of patients with Dementia. This article attempts to discuss the present literature about palliative care in Dementia, in order to clarify the evidence which underlies the European Association for Palliative Care 'White paper defining optimal palliative care in older people with dementia'.

  14. An Early Glenn Operation May be Associated with the Later Occurrence of Protein-Losing Enteropathy in Fontan Patients : Association of Early Glenn and Failing Fontan.

    Science.gov (United States)

    Unseld, Bettina; Stiller, Brigitte; Borth-Bruhns, Thomas; du Bois, Florian; Kroll, Johannes; Grohmann, Jochen; Fleck, Thilo

    2017-08-01

    Protein-losing enteropathy (PLE) and plastic bronchitis (PB) are major causes of long-term mortality after Fontan operation. The objective of this study was to determine early clinical risk factors before the onset of PLE and PB. In a cohort study, 106 Fontan patients between 2005 and 2013 were examined. A median of 5.3 (1.5-8.5) years later, follow-up questionnaires were used to group the patients in a PLE or PB group (n = 14) and a non-PLE/PB group (n = 92). Prevalence of PLE was 9.4% (n = 10) and of PB 3.8% (n = 4). At follow-up, five patients (4.7%) died of PLE or PB. Median age at death was 6.2 years (IQR 10.5, 95% CI 5.3-23.4). We observed no significant group differences in gender distribution (p = 0.73), ventricular morphology (p = 0.87), surgical technique (p = 0.64), conduit fenestration (p = 0.34), age at Fontan operation (p = 0.54), and need for diuretics (p = 0.56). Hypoplastic left heart syndrome was more frequent in the PLE/PB group 50 vs. 22.8% (p = 0.03) OR 3.4 (95% CI 1.1-10.8). The modified Glenn procedure was performed at a median age of 4 months (IQR 4.0) in the PLE/PB group versus 8 months (IQR 8.0) in the non-PLE/PB group (p = 0.01). The early Glenn procedure and hypoplastic left heart syndrome may be associated with the development of PLE and PB.

  15. Palliative care development in the Asia-Pacific region: an international survey from the Asia Pacific Hospice Palliative Care Network (APHN).

    Science.gov (United States)

    Yamaguchi, Takashi; Kuriya, Meiko; Morita, Tatsuya; Agar, Meera; Choi, Youn Seon; Goh, Cynthia; Lingegowda, K B; Lim, Richard; Liu, Rico K Y; MacLeod, Roderick; Ocampo, Rhodora; Cheng, Shao-Yi; Phungrassami, Temsak; Nguyen, Yen-Phi; Tsuneto, Satoru

    2017-03-01

    Although palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated. This survey aimed to clarify the current status of palliative care in the Asia-Pacific region. Questionnaires were sent to a representative physician of each member country/region of the Asia Pacific Hospice Palliative Care Network (APHN). The questionnaire examined palliative care service provision, information regarding physician certification in palliative care, the availability of essential drugs for palliative care listed by the International Association for Hospice and Palliative Care (IAHPC) and the regulation of opioid-prescribing practice. Of the 14 member countries/regions of the APHN, 12 (86%) responded. Some form of specialist palliative care services had developed in all the responding countries/regions. Eight member countries/regions had physician certifications for palliative care. Most essential drugs for palliative care listed by the IAHPC were available, whereas hydromorphone, oxycodone and transmucosal fentanyl were unavailable in most countries/regions. Six member countries/regions required permission to prescribe and receive opioids. The development of palliative care is in different stages across the surveyed countries/regions in the Asia-Pacific region. Data from this survey can be used as baseline data for monitoring the development of palliative care in this region. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  16. Bosentan Improves Exercise Capacity in Adolescents and Adults After Fontan Operation

    DEFF Research Database (Denmark)

    Hebert, Anders; Mikkelsen, Ulla Ramer; Thilen, Ulf

    2014-01-01

    BACKGROUND: The Fontan procedure has improved survival in children with functionally univentricular hearts. With time, however, complications such as reduced exercise capacity are seen more frequently. Exercise intolerance is multifactorial, but pulmonary vascular resistance probably plays...... of this study was therefore to examine the efficacy and safety of bosentan in Fontan patients. METHODS AND RESULTS: Seventy-five adolescents and adults were randomized 1:1 to 14 weeks of treatment with bosentan or placebo. Cardiopulmonary exercise test, functional class, blood samples, and quality......)) in the placebo group (P=0.02). Cardiopulmonary exercise test time increased by 0.48 minute (from 6.79 to 7.27 minutes) versus 0.08 minute (from 6.94 to 7.02 minutes; P=0.04). Nine bosentan-treated patients improved 1 functional class, whereas none improved in the placebo group (P=0.0085). Side effects were mild...

  17. A different approach to treatment of failing Fontan: Transcatheter covered stent implantation.

    Science.gov (United States)

    Yücel, İlker Kemal; Ballı, Şevket; Hekim Yılmaz, Emine; Çelebi, Ahmet

    2016-04-01

    A 5-year-old male with a double outlet right ventricle with noncommitted ventricular septal defect and pulmonary stenosis underwent a bidirectional Glenn operation at 2 years and a Fontan operation with ligation of the pulmonary trunk at 5 years. He presented with pleural effusion 3 months after the Fontan operation. Physical examination revealed a grade 3/6 systolic murmur in the pulmonary area. Echocardiographic evaluation revealed an antegrade pulmonary flow (APF) of gradient 80 mmHg across the ventriculopulmonary communication. Cardiac catheterization and angiography demonstrated the presence of residual antegrade pulmonary flow and stenosis at the pulmonary artery bifurcation. Both pathologies were treated using a single covered stent. Relief of the pulmonary artery stenosis and total occlusion of the residual APF was demonstrated on a control angiogram.

  18. Psychosocial interventions for fatigue during cancer treatment with palliative intent

    NARCIS (Netherlands)

    Poort, H.; Peters, M.; Bleijenberg, G.; Gielissen, M.F.; Goedendorp, M.M.; Jacobsen, P.; Verhagen, S.; Knoop, H.

    2017-01-01

    BACKGROUND: Fatigue is a prevalent and burdensome symptom for patients with incurable cancer receiving cancer treatment with palliative intent and is associated with reduced quality of life. Psychosocial interventions seem promising for management of fatigue among cancer patients. OBJECTIVES: To

  19. A defined management strategy improves early outcomes after the Fontan procedure: the PORTLAND protocol.

    Science.gov (United States)

    Sunstrom, Rachel E; Muralidaran, Ashok; Gerrah, Rabin; Reed, Richard D; Good, Milon K; Armsby, Laurie R; Rekito, Andrew J; Zubair, M Mujeeb; Langley, Stephen M

    2015-01-01

    Patients undergoing the Fontan procedure may have extended hospital stay due to various postoperative factors including prolonged chest tube drainage. Our aim was to determine the efficacy of our Fontan management protocol in reducing chest tube drainage and length of stay. Patients who underwent a Fontan procedure at our institution from June 2008 to September 2013 were analyzed (n = 42). We currently manage our patients according to the PORTLAND protocol: Peripheral vasodilation, Oxygen, Restriction of fluids, Technique of surgery, Low-fat diet, Anticoagulation (including antithrombin III management), No ventilator, and Diuretics. Group A (n = 28) had surgery prior to initiation of this protocol; group B (n = 14) had surgery during the current protocol era. The median number of chest tube days was lower in group B (6 vs 11 days, p < 0.001) as was the total indexed drainage (126 vs 259 mL/kg, p < 0.001). Patients in group B had shorter intensive care unit length of stay (4 vs 7 days, p = 0.004) and hospital length of stay (8 vs 13 days, p = 0.001). Group B had higher preoperative common atrial pressures (7.0 vs 5.8 mm Hg, p = 0.017), end-diastolic pressures (9 vs 7 mm Hg, p = 0.026), and trended toward higher pulmonary artery pressures (11.5 vs 9.5 mm Hg, p = 0.077). There was no statistically significant difference in age, weight, transpulmonary gradient, or pulmonary vascular resistance between groups. The PORTLAND protocol has improved early outcomes after the Fontan procedure. Chest tube drainage and duration, and both intensive care unit and hospital length of stay have been reduced since initiation of this protocol. Copyright © 2015 The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.

  20. New insights into the aspects of pulmonary diffusing capacity in Fontan patients

    DEFF Research Database (Denmark)

    Idorn, Lars; Hanel, Birgitte; Jensen, Annette S

    2014-01-01

    by 48.3 ± 17.4% in the Fontan group and by 20.2 ± 13.9% in the control group (p = 0.001). In a multiple linear regression analysis including the explanatory variables of surgical data and exercise data at rest and peak exercise, the resting cardiac index was an independent predictor of the diffusing...... capacity (regression coefficient: 0.18, p

  1. Plastic bronchitis: symptomatic improvement after pulmonary arterial stenting in four patients with Fontan circulation.

    Science.gov (United States)

    Tanase, Daniel; Ewert, Peter; Eicken, Andreas

    2015-01-01

    Plastic bronchitis is a severe complication after a Fontan procedure, with an estimated incidence around 1-2% and poor prognosis. We present the cases of four patients with plastic bronchitis after a total cavopulmonary connection with a stenosis of the left pulmonary artery that was stented successfully. In three of the four patients, symptoms improved after catheter intervention in combination with pulmonary vasodilator and inhalative treatment.

  2. Late Clinical Outcomes of the Fontan Operation in Patients with Tricuspid Atresia

    Directory of Open Access Journals (Sweden)

    Mastalir Eduardo T.

    2002-01-01

    Full Text Available OBJECTIVE: Evaluation of the long-term clinical results of the Fontan operation in patients with tricuspid atresia. METHODS: A retrospective analysis was made at the Instituto de Cardiologia do Rio Grande do Sul (Institute of Cardiology of Rio Grande do Sul, from August 1980 through January 2000, of 25 patients with a long-term follow-up, out of a series of 36 patients who underwent the Fontan operation or one of its variants due to tricuspid atresia. Their mean age at surgery was 5.4±3.1 years, and their mean weight was 15.8±6.1 kg, the majority of them (63.9% being males. Four patients underwent the classical Fontan operation, 12 the Kreutzer variant, 6 the Björk variant, 9 total cavopulmonary shunt with a fenestrated tube, and 5 total cavopulmonary shunt with a nonfenestrated tube. RESULTS: The patients were followed-up on an outpatient basis, with a mean long-term survival time of 5.5±4.2 years (50 days to 17.8 years and a late mortality rate of 8%. Arterial saturation increased from 77.2±18.8% in the preoperative period to 91±6.7% upon the last outpatient visit (p>0.05. At the final check, most (67% patients were asymptomatic and 87% could tolerate exercise. Ten (40% patients experienced some kind of complication during the long-term follow-up, such as cardiac arrhythmia, cyanosis, protein-losing enteropathy, neurological events, right heart failure, intolerance to exercise and reoperation. CONCLUSION: The results indicate that, once the immediate postoperative period is over, during which the adaptations to the new circulatory physiology occur, the evolution of patients with tricuspid atresia who underwent the Fontan operation is satisfactory, in spite of a low, yet significant, morbidity.

  3. Fontan-associated protein-losing enteropathy and heart transplant: A Pediatric Heart Transplant Study analysis.

    Science.gov (United States)

    Schumacher, Kurt R; Gossett, Jeffrey; Guleserian, Kristine; Naftel, David C; Pruitt, Elizabeth; Dodd, Debra; Carboni, Michael; Lamour, Jacqueline; Pophal, Stephen; Zamberlan, Mary; Gajarski, Robert J

    2015-09-01

    Post-Fontan protein-losing enteropathy (PLE) is associated with significant morbidity and mortality. Although heart transplantation (HTx) can be curative, PLE may increase the risk of morbidity before and after HTx. This study analyzed the influence of PLE influence on waiting list and post-HTx outcomes in a pediatric cohort. Fontan patients listed for HTx and enrolled in the Pediatric Heart Transplant Study from 1999 to 2012 were stratified by a diagnosis of PLE, and the association of PLE with waiting list and post-HTx mortality, rejection, and infection was analyzed. Compared with non-PLE Fontan patients (n = 260), PLE patients listed for HTx (n = 96) were older (11.9 years vs 7.6 years; p = 0.003), had a larger body surface area (1.1 m(2) vs 0.9 m(2); p = 0.0001), had lower serum bilirubin (0.5 vs 0.9 mg/dl; p = 0.01), lower B-type natriuretic peptide (59 vs 227 pg/ml; p = 0.006), and were less likely to be on a ventilator (3% vs 13%; p = 0.006). PLE patients had lower waiting list mortality than non-PLE Fontan patients (p PLE was not independently associated with increased post-HTx mortality at any time point. In this multicenter cohort, the diagnosis of PLE alone was not associated with increased waiting list mortality or post-HTx morbidity or mortality. Given the limitations of our data, this analysis suggests that PLE patients in the pediatric age group have outcomes similar to their non-PLE counterparts. Additional multicenter studies of PLE patients with targeted collection of PLE-specific information will be necessary to fully delineate the risks conferred by PLE for HTx. Copyright © 2015 International Society for Heart and Lung Transplantation. Published by Elsevier Inc. All rights reserved.

  4. Simulation of aortopulmonary collateral flow in Fontan patients for use in prediction of interventional outcomes.

    Science.gov (United States)

    Frieberg, Petter; Sjöberg, Pia; Revstedt, Johan; Heiberg, Einar; Liuba, Petru; Carlsson, Marcus

    2017-08-07

    Patients with complex congenital heart disease may need to be converted to a Fontan circulation with systemic venous return surgically connected to the pulmonary circulation. These patients frequently form aortopulmonary collaterals (APC), that is arterial inflows to the pulmonary artery vascular tree. The aim of this study was to develop a method to calculate the effect of APC on the pulmonary flow distribution based on magnetic resonance imaging (MRI) measurements and computational fluid dynamics simulations in order to enable prediction of interventional outcomes in Fontan patients. Patient-specific models of 11 patients were constructed in a 3D-design software based on MRI segmentations. APC flow was quantified as the difference between pulmonary venous flow and pulmonary artery flow, measured by MRI. A method was developed to include the modulating effect of the APC flow by calculating the patient-specific relative pulmonary vascular resistance. Simulations, including interventions with a Y-graft replacement and a stent dilatation, were validated against MRI results. The bias between simulated and MRI-measured fraction of blood to the left lung was 2·9 ± 5·3%. Including the effects of the APC flow in the simulation (n = 6) reduced simulation error from 9·8 ± 7·0% to 5·2 ± 6·3%. Preliminary findings in two patients show that the effect of surgical and catheter interventions could be predicted using the demonstrated methods. The work demonstrates a novel method to include APC flow in predictive simulations of Fontan hemodynamics. APC flow was found to have a significant contribution to the pulmonary flow distribution in Fontan patients. © 2017 The Authors. Clinical Physiology and Functional Imaging published by John Wiley & Sons Ltd on behalf of Scandinavian Society of Clinical Physiology and Nuclear Medicine.

  5. Clinical significance of thrombosis in an intracardiac blind pouch after a Fontan operation.

    Science.gov (United States)

    Lee, Sang Yun; Baek, Jae Suk; Kim, Gi Beom; Kwon, Bo Sang; Bae, Eun Jung; Noh, Chung Il; Choi, Jung Yun; Lim, Hong Kuk; Kim, Woong Han; Lee, Jeong Ryul; Kim, Yong Jin

    2012-01-01

    The univentricular heart after the Fontan operation may have a blind pouch formed by the pulmonary stump or rudimentary ventricle according to the anatomy before surgery. Thrombosis in an intracardiac blind pouch of patients with a univentricular heart is a hazardous complication. Because only a few reports have described this complication, the authors evaluated the clinical significance of thrombosis in an intracardiac blind pouch of a univentricular heart. They performed a retrospective review of medical records from August 1986 to December 2007. Four patients were confirmed as having thrombosis in a pulmonary artery stump and one patient as having thrombosis in a rudimentary ventricle shown by cardiac computed tomography (CT). This represents 1.85% (5/271) of patients with ongoing regular follow-up evaluation after the Fontan operation. The median age at diagnosis was 14.2 years. Two of the five patients were taking aspirin and one patient was taking warfarin when they were identified for the development of thrombosis. None of the patients demonstrated thrombosis in the Fontan tract or venous side of the circulation. Brain magnetic resonance imaging (MRI) showed that three patients had cerebral infarction and one patient had suggestive old ischemia. Three patients with thrombus in the pulmonary stump underwent pulmonary artery stump thrombectomy and pulmonary valve obliteration. One patient with thrombus in the rudimentary ventricle underwent ventricular septal defect (VSD) closure with thrombectomy. Thrombus in a blind pouch could cause systemic thromboembolism despite little blood communication. Therefore, surgical modification of the pulmonary stump and VSD closure of the rudimentary ventricle are required to reduce the risk of later thrombus formation. Clinicians should not overlook the possibility of thrombus in a ligated pulmonary artery stump or a rudimentary ventricle after the Fontan operation, which may increase the risk of embolic stroke for patients

  6. Palliative care and palliative radiation therapy education in radiation oncology: A survey of US radiation oncology program directors.

    Science.gov (United States)

    Wei, Randy L; Colbert, Lauren E; Jones, Joshua; Racsa, Margarita; Kane, Gabrielle; Lutz, Steve; Vapiwala, Neha; Dharmarajan, Kavita V

    The purpose of this study was to assess the state of palliative and supportive care (PSC) and palliative radiation therapy (RT) educational curricula in radiation oncology residency programs in the United States. We surveyed 87 program directors of radiation oncology residency programs in the United States between September 2015 and November 2015. An electronic survey on PSC and palliative RT education during residency was sent to all program directors. The survey consisted of questions on (1) perceived relevance of PSC and palliative RT to radiation oncology training, (2) formal didactic sessions on domains of PSC and palliative RT, (3) effective teaching formats for PSC and palliative RT education, and (4) perceived barriers for integrating PSC and palliative RT into the residency curriculum. A total of 57 responses (63%) was received. Most program directors agreed or strongly agreed that PSC (93%) and palliative radiation therapy (99%) are important competencies for radiation oncology residents and fellows; however, only 67% of residency programs had formal educational activities in principles and practice of PSC. Most programs had 1 or more hours of formal didactics on management of pain (67%), management of neuropathic pain (65%), and management of nausea and vomiting (63%); however, only 35%, 33%, and 30% had dedicated lectures on initial management of fatigue, assessing role of spirituality, and discussing advance care directives, respectively. Last, 85% of programs reported having a formal curriculum on palliative RT. Programs were most likely to have education on palliative radiation to brain, bone, and spine, but less likely on visceral, or skin, metastasis. Residency program directors believe that PSC and palliative RT are important competencies for their trainees and support increasing education in these 2 educational domains. Many residency programs have structured curricula on PSC and palliative radiation education, but room for improvement exists in

  7. Total cavopulmonary direct anastomosis in the beating heart without prosthetic material: preliminary experience with modified extracardiac fontan procedure.

    Science.gov (United States)

    Xing, Quansheng; Shi, Lei; Han, Li; Wu, Qin

    2013-09-01

    To describe modified extracardiac Fontan procedure characterized with total cavopulmonary direct anastomosis in the beating heart without using prosthetic material in seven patients and summarize the clinical experiences and follow-up results. From April 2007 to April 2011, seven patients with complex cardiac anomalies underwent this operation. The main pulmonary artery (MPA) was transected at the base of the pulmonary valve and the pulmonary annulus was oversewn. Then the inferior vena cava (ICV) was transected at the junction with the atrium. The MPA was brought to the side of the ICV and anastomosed in an end-to-end fashion. The superior vena cava (SVC) was transected at its entrance into the right atrium and was anastomosed to the right pulmonary artery. Five patients received transcatheter device closure of the fenestration with either a small atrial septal defect or ventricular septal defect occluder. All patients were in sinus rhythm and extubated on the first postoperative day. Immediate postoperative arterial oxygen saturation was 95% (93% to 96%). During the follow-up period from 17 to 65 months (median 48 months), there were no deaths and reoperations. Arterial oxygen saturation ranged from 88% to 92% on room air. The fenestration was closed in five patients postoperatively and the arterial oxygen saturation rose to 95%. Total cavopulmonary direct anastomosis in the beating heart without the use of prosthetic material provides growth potential, and avoids the need for anticoagulation. Longer follow-up will be necessary to evaluate this modification. © 2013 Wiley Periodicals, Inc.

  8. Palliative care in Romania

    NARCIS (Netherlands)

    Dumitrescu, Luminita

    2006-01-01

    Palliative care concentrates on supporting and helping people with an incurable disease and aims to improve patient’s quality of life by reducing or eliminating pain and other physical symptoms. Palliative care is a new phenomenon in Romania . PhD student Luminita Dumitrescu describes the

  9. Litteraturstudie: akupunktur og palliation

    DEFF Research Database (Denmark)

    Larsen, Anne Bolt

    2013-01-01

    af systematiske søgninger fra 2002-2012 i Pubmed, Cochrane, Cinahl og PsykInfo med søgeordene acupuncture and palliation, acupuncture and cancer, acupuncture and placebo, acupuncture and neurophysiology, acupuncture and palliation and nursing. RCT-forskning viser ikke overbevisende effekt af...

  10. [Pulsatile Fontan: transcatheter closure of patent pulmonary artery. Follow up mid-term].

    Science.gov (United States)

    Gamboa, Ricardo; Mollón, Francisco P; Ríos Méndez, Raúl E; Cayré, Raúl O; Cazzaniga, Mario; Arroyo, Graciela M; Gutiérrez, Diego F

    2008-01-01

    We report the percutaneous closure of the pulmonary artery with residual shunt in patients with Fontan type circuit. Patients aged 9 and 11 years, with SaO2 of 88 and 96%, respectively. One of them coursing with headaches and functional class II. Both patients with total cavopulmonary anastomosis and fenestrated extracardiac conduit and permeable pulmonary artery (pulsatile Fontan). An Amplatzer duct-occluder device was implanted in the pulmonary artery entering from the femoral vein. Follow-up by means of clinical examination, imaging, and catetherization was pursued. Case 1, patency fenestration, Qp/Qs: 0.7/1. Case 2, closed fenestration, Qp/Qs; 1.3/1. We obtained immediate occlusion with 6/4 and 8/6 devices, respectively; pressure recordings revealed modification of the arterial morphology to biphasic; pulmonary pressure dropped 2 mm Hg in the first patient, without alteration in the second case; no changes in SaO2 were registered. Time of fluoroscopy was 57 and 45 minutes, respectively. Follow-up was maintained for 2.8 and 2.3 years, respectively. In patient 1, headaches disappeared and the fenestration was occluded with an Amplatzer septal-occluder one year later, raising SaO2 to 96%; no complications occurred nor was recanalization of the pulmonary artery needed in either case. Percutaneous occlusion of patent pulmonary artery in patients with Fontan type circuit is a feasible and effective procedure, and avoids overload of the single ventricle.

  11. [Case report--Fontan patient on the Southside Festival--60 000 visitors / 119 999 ventricles].

    Science.gov (United States)

    Bushuven, Stefan; Schindler, Ehrenfried

    2013-10-01

    Patients with univentricular congenital heart disease are treated with Fontan-procedure for more than 40 years resulting in mainly good life-quality for pediatric and now more and more adult patients. Due to prolonged life expectation and adequate physical state, adolescent and adult Fontan-patients participate in normal life activities like the main population. Mass events like open-air concerts and sport events belong to these activities.Since 1999 the Southside Festival is one of the main open air events in southern Germany with about 60.000 visitors. Visitors with minor or major health problems are treated by emergency response services like the German Red Cross, the German St Johns Ambulance and the German Order of Malta. The article refers to the special pathophysiology and management of Fontan-patients in emergency and anaesthesiologic settings based on a case report from the Southside Festival. Due to increasing "fontanpopulation" profound education of attending physicians and paramedics is inevitable to provide good quality in prehospital and innerhospital care. © Georg Thieme Verlag Stuttgart · New York.

  12. Palliative therapy for stage IV rectal adenocarcinoma: how frequently is it used?

    Science.gov (United States)

    Kulaylat, Audrey S; Rivet, Emily B; Hollenbeak, Christopher S; Stewart, David B

    2017-10-01

    Palliative care is associated with decreased cost and improved quality of life, although its use in stage IV rectal cancer is understudied. Stage IV rectal cancer patients (2004-2011) who did not undergo surgery with curative intent were identified within the National Cancer Database. Patients receiving palliative therapy were stratified by the type of intervention, as were patients undergoing chemotherapy that was not designated as palliative. Logistic regression was used to identify factors associated with the receipt of palliative therapy. A total of 11,245 patients were analyzed, of which 2314 (20.6%) received palliative therapy. Use of palliative therapy as a category of treatments did not change significantly from 2004-2012 (19.4%-23.0%; P = 0.14), but the use of palliative chemotherapy nearly doubled (4.7%-8.7%; P palliative therapy included age >60 y and increasing chronic comorbidities; these subgroups also had lower odds of receiving chemotherapy that was not designated as palliative. Differences in gender and race were not associated with variations in the receipt of palliative therapy. For stage IV rectal cancers managed without curative intent, use of palliative therapies remains consistently low, with a preference for sicker patients. Copyright © 2017 Elsevier Inc. All rights reserved.

  13. Danish Palliative Care Database

    DEFF Research Database (Denmark)

    Grønvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang

    2016-01-01

    Aims: The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population: The study population is all......, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred......-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. Descriptive data: In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer...

  14. The effect of resolution on viscous dissipation measured with 4D flow MRI in patients with Fontan circulation: Evaluation using computational fluid dynamics

    NARCIS (Netherlands)

    M. Cibiş (Merih); K. Jarvis (Kelly); M. Markl (Michael); M. Rose (Michael); C. Rigsby (Cynthia); A.J. Barker (Alex); J.J. Wentzel (Jolanda)

    2015-01-01

    textabstractViscous dissipation inside Fontan circulation, a parameter associated with the exercise intolerance of Fontan patients, can be derived from computational fluid dynamics (CFD) or 4D flow MRI velocities. However, the impact of spatial resolution and measurement noise on the estimation of

  15. Self-assessment in cancer patients referred to palliative care

    DEFF Research Database (Denmark)

    Strömgren, Annette S; Goldschmidt, Dorthe; Groenvold, Mogens

    2002-01-01

    BACKGROUND: Research in palliative care is considered difficult due to the poor health of patients. However, patient-provided data are essential for a thorough description of patient symptomatology and for the evaluation of care. METHODS: The authors examined the feasibility of a questionnaire......-based study using the European Organization for Research and Treatment of Cancer quality-of-life instrument EORTC QLQ-C30, the Edmonton Symptom Assessment System (ESAS), and the Hospital Anxiety and Depression Scale (HADS) in cancer patients who were receiving palliative care. This report describes...... the symptomatology of participating patients and examines differences in symptomatology between patients in three palliative care functions: inpatient, outpatient, and palliative home care. RESULTS: Of 267 eligible patients who were referred to a department of palliative medicine, initial self...

  16. Rethinking and integrating nephrology palliative care: a nephrology nursing perspective.

    Science.gov (United States)

    Young, Susan

    2009-01-01

    Mortality rates for people with chronic kidney disease are worse than most cancers. High symptom burden, multiple comorbidities and advanced age are common among people receiving renal care. It is, therefore, not surprising that among the nephrology community, awareness is growing regarding the need for nephrology palliative care. This article offers a perspective of the current "state of the art" of nephrology palliative care and its relationship to nephrology nursing. A literature review and communication with experts in the field inform this perspective. Understanding the emerging field of nephrology palliative care gives nephrology nurses a clearer position from which to rethink their role in integrating nephrology and palliative care. Implementing compassionate, ethical and effective palliative care for patients and families living with kidney disease offers hope for improved quality of living and of dying for these patients and their families, and for the renal professionals who care for them.

  17. Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions: a pilot study.

    Science.gov (United States)

    Liberman, D B; Song, E; Radbill, L M; Pham, P K; Derrington, S F

    2016-05-01

    Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Initiating palliative care services in the outpatient primary care setting is

  18. Statin-Based Palliative Therapy for Hepatocellular Carcinoma.

    Science.gov (United States)

    Shao, Joni Yu-Hsuan; Lee, Fei-Peng; Chang, Chia-Lun; Wu, Szu-Yuan

    2015-10-01

    Most hepatocellular carcinoma (HCC) patients worldwide do not receive curative treatments. Alternative treatments for most HCC patients include palliative treatments, such as transarterial chemoembolization (TACE), chemotherapy, and radiotherapy. Although statins may be a chemopreventive treatment option for reducing hepatitis B virus (HBV)- and hepatitis C virus (HCV)-related HCC risks, their therapeutic effects are unknown. This study evaluated the effects of statin on HCC patients receiving palliative treatment.Data from the National Health Insurance claims database and cancer registry databases of The Collaboration Center of Health Information Application, Taiwan, were analyzed. We included HCC patients who were treated between January 1, 2001, and December 31, 2010, and followed them from the index date to December 31, 2012. The inclusion criteria were presence of HBV carrier-related HCC, age >20 years, and having received TACE, radiotherapy, or chemotherapy as palliative treatment. The exclusion criteria were cancer diagnosis before HCC was confirmed, surgery, liver transplantation, radiofrequency ablation, or percutaneous ethanol injection as curative treatment, missing sex-related information, HCC diagnosis before HBV, and age palliative treatment with and without statin use, respectively. HCC patients who received palliative treatment with statin use had lower HCC-specific deaths in all stages than those who received palliative treatment without statin use (P = 0.0001, 0.0002, 0.0012, and 0.0002, and relative risk (RR) = 0.763, 0.775, 0.839, and 0.718, for stages I-IV, respectively). In all-cause and HCC-specific deaths, decreasing trends (P for trend palliative treatment only, and palliative treatment plus statin use. The aHRs of all-cause and HCC-specific deaths increased with the progress in cancer stage and reduced with the use of advanced therapeutic modalities (P for trend Palliative treatments are critical for HCC patients. Multiple therapeutic

  19. Spiritual well-being and quality of life among Icelanders receiving palliative care: data from Icelandic pilot-testing of a provisional measure of spiritual well-being from the European Organisation for Research and Treatment of Cancer.

    Science.gov (United States)

    Asgeirsdottir, G H; Sigurdardottir, V; Gunnarsdottir, S; Sigurbjörnsson, E; Traustadottir, R; Kelly, E; Young, T; Vivat, B

    2017-03-01

    Palliative care focuses on improving quality of life (QoL). This study examined the feasibility of the Icelandic version of a provisional European Organisation for Research and Treatment of Cancer (EORTC) measure of spiritual well-being (SWB), and explored the relationship between SWB and QoL for palliative care patients in Iceland. Instruments from the EORTC were used: the provisional measure of SWB, which was undergoing pilot-testing in Iceland, and the EORTC QLQ C15-PAL. The correlation between scores was examined and descriptive statistics were used. Structured interviews explored feasibility. Thirty persons participated with average age 72 years. Belief in God or a higher power had the mean 3.33 on a 1-4 scale and the mean for overall SWB was 5.73 on a 1-7 scale. The mean score for global health/QoL was 59.4, physical functioning 48.5 and emotional functioning 78.9 on a 0-100 scale. Overall QoL was positively correlated with SWB showing r(30) = 0.386, P = 0.035. The participants found that answering the provisional EORTC QLQ-SWB prompted an emotional response and took the opportunity to discuss the subject. The provisional SWB measure was found relevant for the Icelandic context, and the study indicates that SWB and QoL are closely connected. © 2015 John Wiley & Sons Ltd.

  20. Axillary arteriovenous fistula for the palliation of complex cyanotic congenital heart disease: is it an effective tool?

    Science.gov (United States)

    Quiñonez, Luis G; Brown, Morgan L; Dearani, Joseph A; Burkhart, Harold M; Puga, Francisco J

    2011-01-01

    Patients with complex cyanotic congenital heart disease and a bidirectional cavopulmonary connection who are not candidates for or had failed Fontan operation may experience progressive cyanosis. An axillary arteriovenous anastomosis may be constructed to augment pulmonary blood flow. This report reviews our results with this approach in this complex group of patients. The records of patients with previous cavopulmonary connections who underwent a surgical anastomosis between the axillary artery and the vein for palliation of severe progressive cyanosis were reviewed. Eleven patients were identified. The median age at the time of the axillary arteriovenous anastomosis was 19.2 years (7.97-41.75 years). Seven patients were not candidates for the Fontan operation, and 4 patients had failed Fontan surgery. Three of the anastomoses were constructed with a side-to-side technique, and 8 anastomoses were constructed with a short interposition graft. Median fistula size was 5 mm (3-6 mm). There was no operative mortality and 1 late death. Median survival was 2.85 years (0.01-7.22 years). All fistulae were patent at follow-up. Median preoperative arterial oxygen saturation was 84% (80%-86%) and 82% (76%-88%) at follow-up (P = .38). Median preoperative hemoglobin was 18.5 g/dL (11.7-22.6 g/dL) and 19.2 g/dL (14.6-22.6 g/dL) at follow-up (P = .97). Median preoperative systemic ventricular ejection fraction was 51% (27%-60%) and 46.5% (28%-60%) at follow-up (P = 1). Significant functional improvement was seen in only 1 patient. In patients with complex cyanotic congenital heart disease who are not candidates for or had failed Fontan operation, palliation with an axillary arteriovenous fistula did not improve cyanosis or polycythemia. Functional outcome and ventricular ejection fraction did not improve or deteriorate. Copyright © 2011 The American Association for Thoracic Surgery. Published by Mosby, Inc. All rights reserved.

  1. Treatment of children with protein - losing enteropathy after fontan and other complex congenital heart disease procedures in condition with limited human and technical resources.

    Science.gov (United States)

    Bejiqi, Ramush; Retkoceri, Ragip; Zeka, Naim; Bejiqi, Hana; Vuqiterna, Armend; Maloku, Arlinda

    2014-02-01

    documented at the time of diagnosis in all 18 patients. At the time of diagnosis all patients receiving some form of anticoagulation, 17 patients receiving other medication: 17 - diuretics and ACE inhibitors, 12 digoxin, 9 antiarrhytmics. Cross-sectional echocardiography was performed for all patients and different abnormalities were registered. In 14 patients also magnetic resonance was performed. Therapeutic approach was based on the non-specific medication (diet, diuretics, digoxin, ACE inhibitors, and anticoagulants), heparin and corticosteroids therapy. Long-term response to this type of therapy was registered in three patients. Nine patients underwent treatment with heparin and corticosteroids and no one experienced long term benefit. Despite of needs for catheter therapy or surgical intervention in our study, in the absent of technical and human resources now any one had underwent those procedures. Six patients has been transferred abroad and in five of them surgical intervention was perform. Protein-losing enteropathy remains a devastating complication of Fontan procedure and despite in advantages in surgical and medical therapy there is no evidence that protein-losing enteropathy is less common in the current area.

  2. Last-resort options for palliative sedation.

    Science.gov (United States)

    Quill, Timothy E; Lo, Bernard; Brock, Dan W; Meisel, Alan

    2009-09-15

    Despite receiving state-of-the-art palliative care, some patients still experience severe suffering toward the end of life. Palliative sedation is a potential way to respond to such suffering, but access is uneven and unpredictable, in part because of confusion about different kinds of sedation. Proportionate palliative sedation (PPS) uses the minimum amount of sedation necessary to relieve refractory physical symptoms at the very end of life. To relieve suffering may require progressive increases in sedation, sometimes to the point of unconsciousness, but consciousness is maintained if possible. Palliative sedation with the intended end point of unconsciousness (PSU) is a more controversial practice that may be considered for much fewer refractory cases. There is more ethical consensus about PPS than PSU. In this article, the authors explore the clinical, ethical, and legal issues associated with these practices. They recommend that palliative care and hospice programs develop clear policies about PPS and PSU, including mechanisms for training and ensuring competency for clinicians, and approaching situations where individuals or institutions may conscientiously object.

  3. Performance of Consultative Palliative Care Model in Achieving Quality Metrics in the ICU.

    Science.gov (United States)

    Wysham, Nicholas G; Hochman, Michael J; Wolf, Steven P; Cox, Christopher E; Kamal, Arif H

    2016-12-01

    Quality metrics for intensive care unit (ICU)-based palliative care have been proposed, but it is unknown how consultative palliative care can contribute to performance on these measures. Assess adherence to proposed quality metrics of ICU-based palliative care by palliative care specialists. Surrogates for 9/14 patient-level quality metrics were assessed in all patients who received an initial palliative care specialist consult while in an ICU from 10/26/2012 to 1/16/2015 in the Global Palliative Care Quality Alliance, a nationwide palliative care quality registry. Two hundred fifty-four patients received an initial palliative care consultation in an ICU setting. Mean (SD) age was 67.5 (17.3) years, 52% were female. The most common reasons for consultation were symptom management (33%) and end-of-life transition (24%). Adherence to ICU quality metrics for palliative care was variable: clinicians documented presence or absence of advance directives in 36% of encounters, assessed pain in 52.0%, dyspnea in 50.8%, spiritual support in 62%, and reported an intervention for pain in 100% of patients with documented moderate to severe intensity pain. Palliative care consultations in an ICU setting are characterized by variable adherence to candidate ICU palliative care quality metrics. Although symptom management was the most common reason for palliative care consultation, consultants infrequently documented symptom assessments. Palliative care consultants performed better in offering spiritual support and managing documented symptoms. These results highlight specific competencies of consultative palliative care that should be complimented by ICU teams to ensure high-quality comprehensive care for the critically ill. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  4. MDCT evaluation of pulmonary embolism in children and young adults following a lateral tunnel Fontan procedure: optimizing contrast-enhancement techniques

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    Prabhu, Sanjay P.; Mahmood, Soran; Sena, Laureen [Children' s Hospital Boston and Harvard Medical School, Department of Radiology, Boston, MA (United States); Lee, Edward Y. [Children' s Hospital Boston and Harvard Medical School, Department of Radiology, Boston, MA (United States); Children' s Hospital Boston and Harvard Medical School, Department of Medicine, Pulmonary Division, Boston, MA (United States)

    2009-09-15

    Pulmonary embolism (PE) is a life-threatening thromboembolic complication in patients who have undergone a Fontan procedure for augmenting pulmonary blood flow in the setting of single-ventricle physiology. In patients following a Fontan procedure, lack of proper contrast agent mixing in the right atrium and sluggish, low-velocity blood flow within the Fontan circulation often results in suboptimal contrast enhancement within the pulmonary artery for evaluating PE. Unfortunately, there is a paucity of information describing the optimal contrast-enhancement technique with multidetector CT (MDCT) for evaluating PE in children and young adults following a Fontan procedure. We illustrate the MDCT imaging findings of suboptimal contrast enhancement within the pulmonary artery, which can be mistaken for PE, in patients following a lateral Fontan procedure, and we discuss MDCT techniques to optimize contrast enhancement within the pulmonary artery in these patients for evaluating PE. The MDCT imaging findings in pediatric and young adult patients following a lateral Fontan procedure and with clinically suspected PE are illustrated. We describe intravenous contrast agent injection techniques that can be used to optimize the contrast enhancement in the pulmonary artery in patients following a lateral Fontan procedure. The use of a suboptimal contrast-enhancement technique led to initial misdiagnosis and incomplete evaluation of PE in the three patients following a lateral Fontan procedure. Imaging in two patients showed that optimal evaluation of thrombosis in the Fontan pathway and PE in the pulmonary arteries can be successfully achieved with simultaneous upper- and lower-limb injections of contrast agent. This series demonstrates that suboptimal contrast enhancement can result in misdiagnosis or incomplete evaluation of PE in children and young adults following a lateral Fontan procedure. Careful attention to optimizing contrast enhancement during MDCT examination for

  5. Spirituality and palliative care

    Directory of Open Access Journals (Sweden)

    Bert Broeckaert

    2011-01-01

    Full Text Available This paper shows how palliative care developed as a reaction to the compartimentalized technical approach of modern medicine. But what does it mean if we say palliative care wants to treat patients as whole persons? A few pitfalls need to avoided. All disciplines involved in palliative care should act within the limits of their own specific professional role. Physicians and nurses should certainly not force patients into spiritual or religious discussions or practices. They should understand that religion and spirituality also influence the ethical (and thus medical choices people make, respect their own conscience and worldview too and cultivate conscious compassion.

  6. Palliative care and dementia.

    Science.gov (United States)

    Scott, Carrie

    2014-09-01

    Dementia is a highly prevalent, progressive, life-limiting illness for which there is no cure. Palliative care is a specialized area of healthcare that focuses on improving the quality of life for individuals with life-limiting diseases. Symptoms such as disorientation, tension, and anxiety occur in patients with dementia at moderate to severe levels as they approach the end of their lives, as well as other common symptoms found with cancer patients, yet the dementia population continues to be unrecognized for their need for palliative care. This article examines current literature with respect to palliative care for patients with dementia.

  7. Palliative Care in Surgery: Defining the Research Priorities.

    Science.gov (United States)

    Lilley, Elizabeth J; Cooper, Zara; Schwarze, Margaret L; Mosenthal, Anne C

    2017-07-01

    Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet, these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care. Surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients' physical, emotional, social, and spiritual well-being and quality of life. To date, evidence to support the role of palliative care in surgical practice is sparse and palliative care research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of palliative care. The objective of this article was to describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field. We propose a research agenda to address these gaps and provide a road map for future investigation.

  8. Gaps in Provision of Primary and Specialty Palliative Care in the Acute Care Setting by Race and Ethnicity.

    Science.gov (United States)

    Chuang, Elizabeth; Hope, Aluko A; Allyn, Katherine; Szalkiewicz, Elissa; Gary, Brittany; Gong, Michelle N

    2017-11-01

    Previous research has identified a large unmet need in provision of specialist-level palliative care services in the hospital. How much of this gap is filled by primary palliative care provided by generalists or nonpalliative specialists has not been quantified. Estimates of racial and ethnic disparities have been inconsistent. The objective of this study was to 1) estimate primary and specialty palliative care delivery and to measure unmet needs in the inpatient setting and 2) explore racial and ethnic disparities in palliative care delivery. This was a cross-sectional, retrospective study of 55,658 adult admissions to two acute care hospitals in the Bronx in 2013. Patients with palliative care needs were identified by criteria adapted from the literature. The primary outcomes were delivery of primary and specialist-level palliative care. In all, 18.5% of admissions met criteria for needing palliative care. Of those, 18% received specialist-level palliative care, an estimated 30% received primary palliative care, and 37% had no evidence of palliative care or advance care planning. Black and Hispanic patients were not less likely to receive specialist-level palliative care (adjusted odds ratio [OR] black patients = 1.18, 95% CI 0.98, 1.42; adjusted OR Hispanic patients = 1.24, 95% CI 1.04, 1.48), but they were less likely to receive primary palliative care (adjusted OR black patients = 0.41, 95% CI 0.20, 0.84; adjusted OR Hispanic patients = 0.48, 95% CI 0.25, 0.94). Even when considering primary and specialty palliative care, hospitalized patients have a high prevalence of unmet palliative care need. Further research is needed understand racial and ethnic disparities in palliative care delivery. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  9. Future of Palliative Medicine

    Science.gov (United States)

    Bhatnagar, Sushma; Gupta, Mayank

    2015-01-01

    A ‘need-supply’ and ‘requirement-distribution mismatch’ along with a continuingneed explosion are the biggest hurdles faced by palliative medicine today. It is the need of the hour to provide an unbiased, equitable and evidence-based palliative care to those in need irrespective of the diagnosis, prognosis, social and economic status or geographical location. Palliative care as a fundamental human right, ensuring provision throughout the illness spectrum, global as well as region-specific capacity building, uniform availability of essential drugs at an affordable price, a multidisciplinary team approachand caregiver-support are some of the achievable goals for the future. This supplanted with a strong political commitment, professional dedication and ‘public-private partnerships’ are necessaryto tackle the existing hurdles and the exponentially increasing future need. For effectively going ahead it is of utmost importance to integrate palliative medicine into medical education, healthcare system and societal framework. PMID:25709197

  10. Future of palliative medicine

    Directory of Open Access Journals (Sweden)

    Sushma Bhatnagar

    2015-01-01

    Full Text Available A ′need-supply′ and ′requirement-distribution mismatch′ along with a continuingneed explosion are the biggest hurdles faced by palliative medicine today. It is the need of the hour to provide an unbiased, equitable and evidence-based palliative care to those in need irrespective of the diagnosis, prognosis, social and economic status or geographical location. Palliative care as a fundamental human right, ensuring provision throughout the illness spectrum, global as well as region-specific capacity building, uniform availability of essential drugs at an affordable price, a multidisciplinary team approachand caregiver-support are some of the achievable goals for the future. This supplanted with a strong political commitment, professional dedication and ′public-private partnerships′ are necessaryto tackle the existing hurdles and the exponentially increasing future need. For effectively going ahead it is of utmost importance to integrate palliative medicine into medical education, healthcare system and societal framework.

  11. The impact of palliative care training for oncologists and integrative palliative service in a public-funded hospital cluster-a retrospective cohort study.

    Science.gov (United States)

    Lam, Pak-Lun; Lam, Tai-Chung; Choi, Cheuk-Wai; Lee, Anne Wing-Mui; Yuen, Kwok-Keung; Leung, To-Wai

    2017-11-14

    Oncological care of advanced cancer patients was provided by multiple departments in Hong Kong. One of these departments, the clinical oncology department (COD), introduced systematic palliative care training for its oncologists since 2002. The COD was recognized as a European Society for Medical Oncology (ESMO) Designated Centre of Integrated Oncology and Palliative Care since 2009. This retrospective cohort study aims to review the impact of integrative training and service on palliative care coverage and outcome. Clinical information, palliative service provision, and end-of-life outcomes of patients who passed away from lung, colorectal, liver, stomach, or breast cancer in the Hong Kong West public hospital network during July 2015 to December 2015 were collected. A total of 307 patients were analyzed. Around half (49.2%) were attended primarily by COD, and 68.9% received palliative service. There are significantly fewer patients referred to palliative care from other departments (p palliative referral. COD patients had longer palliative coverage before death (median 65 days versus 24 days, p care at hospice units (36.4 versus 21.2%, p = 0.003), lower ICU admission (0.66 versus 5.1%, p = 0.02), and higher percentage of receiving strong opioid in the last 30 days of life (51.0 versus 28.9%, p primary care team (odds ratio 12.2, p palliative care coverage. The study results suggested that systematic palliative care training of oncologists and integrative palliative service model was associated with higher palliative service coverage and improved palliative care outcomes.

  12. Progress in surgical palliative treatment for malignant obstructive jaundice

    Directory of Open Access Journals (Sweden)

    LIANG Zhang

    2013-06-01

    Full Text Available Obstructive jaundice, also known as surgical jaundice, is divided into benign and malignant types. Most of the patients newly diagnosed with malignant obstructive jaundice have lost the opportunity of receiving radical surgery due to its insidious onset, so surgical palliative treatment is very important for patients with advanced malignant obstructive jaundice. This paper elaborates on various current modalities of surgical palliative treatment for malignant obstructive jaundice. Appropriate modality of surgical palliative treatment is of great significance for patients with advanced malignant obstructive jaundice.

  13. Pediatric Palliative Care in the Intensive Care Unit.

    Science.gov (United States)

    Madden, Kevin; Wolfe, Joanne; Collura, Christopher

    2015-09-01

    The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make prognostication extremely difficult. The uncertainty of prognostication and the available medical technologies make both the neonatal intensive care unit and the pediatric intensive care unit locations where many children will receive Pediatric Palliative Care. Health care providers in the neonatal intensive care unit and pediatric intensive care unit should integrate fundamental Pediatric Palliative Care principles into their everyday practice. Copyright © 2015 Elsevier Inc. All rights reserved.

  14. Timing of Palliative Care Consultations and Recommendations: Understanding the Variability.

    Science.gov (United States)

    Kozlov, Elissa; Carpenter, Brian D; Thorsten, Michael; Heiland, Mark; Agarwal, Anupam

    2015-11-01

    Palliative care consultation teams (PCCTs) provide care that enhances quality of life. The effectiveness of PCCTs depends, however, on their timely utilization by other providers. The goal of this study was to examine the timing of palliative care consultation requests and responses at a single Veteran Affairs Medical Center. The median interval between admission and consultation request was 5 days (range = 0-73 days). The median interval between consultation request and death was 23 days (range = 0-847 days). In logistic regressions, timing variables were not significant predictors of whether consultation recommendations were made or implemented. There is substantial variability in when patients receive a palliative care consultation. Many patients receive palliative care within the first week of hospitalization and their final month of life. © The Author(s) 2014.

  15. Completion of the Three-Stage Fontan Pathway Without Cardiopulmonary Bypass.

    Science.gov (United States)

    Mainwaring, Richard D; Reddy, V Mohan; Hanley, Frank L

    2014-07-01

    The three-stage surgical approach is now accepted as the standard for management of children born with functional single ventricle. However, there is little consensus on the cardiopulmonary bypass strategies employed for these procedures. We have attempted to avoid cardiopulmonary bypass in patients with single ventricle whenever possible to eliminate the adverse effects that are induced by this process. The purpose of this study was to review our experience in patients who underwent all three stages of the Fontan pathway without ever being exposed to bypass. A total of 52 patients with single ventricle underwent "off-pump" treatment at all three stages of their surgical management. The time period of the study was from 2002 to 2013. There were 31 males and 21 females. Anatomic diagnoses included double inlet left ventricle (n = 11), pulmonary atresia with intact ventricular septum (n = 11), tricuspid atresia (n = 10), double outlet right ventricle (n = 9), and other (n = 11). There was no operative mortality in the 52 patients undergoing Fontan completion. The patients have been followed for an average of 5.1 ± 2.5 years, with one late mortality. The median length of hospital stay for the three stages was 17, 5, and 9 days, respectively. Of the 52 patients, 42 were able to undergo all three stages without the need for a blood transfusion. This series demonstrates the feasibility of achieving a Fontan circulation without patients exposed to cardiopulmonary bypass. There was no operative mortality and low mid-term mortality. It is notable that 80% of patients never required a blood transfusion with this approach. The elimination of cardiopulmonary bypass provides several potential clinical benefits in this highly select subset of patients with single ventricle. © The Author(s) 2014.

  16. Fontan conversion to total cavopulmonary connection and arrhythmia ablation: clinical and functional results

    Science.gov (United States)

    Agnoletti, G; Borghi, A; Vignati, G; Crupi, G C

    2003-01-01

    Objectives: To assess the early results of conversion from atriopulmonary to total cavopulmonary connection in patients with failing Fontan operation. Design: Early clinical and instrumental evaluation of patients undergoing conversion from atriopulmonary to total cavopulmonary connection from April 1999 to November 2000. Setting: Tertiary referral centre for congenital heart disease. Patients: 11 Fontan patients (mean (SD) age 20.9 (6.7) years) with refractory arrhythmias or ventricular dysfunction. Interventions: Total cavopulmonary connection, intraoperative ablation, and AAIR pacemaker implantation. Main outcome measures: Holter monitoring, transoesophageal atrial stimulation, ergometric test, and myocardial scintigraphy at a mean (SD) follow up of 16.8 (5.6) months. Results: One early postoperative death occurred. During follow up three patients had relapse of atrial tachycardia, controlled by medical treatment, and two were pacemaker dependent. Transoesophageal stimulation did not induce atrial tachycardia in any patient. Ergometric test showed a diminished exercise tolerance in all but one patient. Mean minute ventilation and maximum oxygen consumption were 62% and 40% of their respective predicted values. Myocardial scintigraphy showed reversal of rest or exercise dysfunction in five patients and improved systemic ventricular function in seven. Mean basal ejection fraction increased from 39.4% (95% confidence interval (CI) 32% to 46%) to 46.5% (95% CI 41.7% to 51.2%) and ejection fraction on effort from 42.3% (95% CI 33.9% to 50.7%) to 50.2% (95% CI 44.5% to 55.9%). Conclusions: Our data show that total cavopulmonary connection associated with intraoperative ablation and pacemaker implantation allows for better control of arrhythmias and improves ventricular function in the majority of patients with failing Fontan. PMID:12527676

  17. Palliative care benchmarks from academic medical centers.

    Science.gov (United States)

    Twaddle, Martha L; Maxwell, Terri L; Cassel, J Brian; Liao, Solomon; Coyne, Patrick J; Usher, Barbara M; Amin, Alpesh; Cuny, Joanne

    2007-02-01

    Palliative care is growing in the United States but little is known about the quality of care delivered. To benchmark the quality of palliative care in academic hospitals. Multicenter, cross-sectional, retrospective chart review conducted between October 1, 2002 and September 30, 2003. Thirty-five University HealthSystem Consortium (UHC) academic hospitals across the United States. A total of 1596 patient records. (1) adults, (2) high-mortality diagnoses: selected cancers, heart failure, human immunodeficiency virus (HIV), and respiratory conditions requiring ventilator support, (3) length of stay (LOS) more than 4 days, and (4) two prior admissions in the preceding 12 months. Compliance with 11 key performance measures (KPM) derived from practice standards, literature evidence, and input from a multidisciplinary expert committee. Analyses examined relationships between provision of the KPM and specific outcomes. Wide variability exists among academic hospitals in the provision of the KPM (0%-100%). The greater the compliance with KPM, the greater the improvement in quality outcomes, cost and LOS. Assessment of pain (96.1%) and dyspnea (90.2%) was high, but reduction of these symptoms was lower (73.3% and 77.2%). Documentation of prognosis (33.4%), psychosocial assessment (26.2%), communication with family/patient (46%), and timely planning for discharge disposition (53.4%) were low for this severely ill population (16.8% hospital mortality). Only 12.9% received a palliative care consultation. The study reveals significant opportunities for improvement in the effective delivery of palliative care. Care that met KPM was associated with improved quality, reduced costs and LOS. Institutions that benchmarked above 90% did so by integrating KPM into daily care processes and utilizing systematized triggers, forms and default pathways. The presence of a formalized palliative care program within a hospital system had a positive effect on the achievement of KPM, whether or

  18. Development of Tachyarrhythmias Late After the Fontan Procedure: The Role of Ablative Therapy.

    Science.gov (United States)

    de Groot, Natasja M S; Bogers, Ad J J C

    2017-06-01

    Patients with a Fontan circulation are at a high risk of developing a variety of cardiac dysrhythmias after cardiac surgery. These dysrhythmias are most often supraventricular tachyarrhythmias (SVT), but ventricular tachyarrhythmias (VT) may also occur. Mechanisms underlying SVT are variable, including both ectopic activity and reentry. Over time, successive SVT may be caused by different mechanisms. The acute success rate of ablative therapy of atrial tachyarrhythmias is considerably high yet during long-term follow-up 'recurrences' frequently occur. It is most likely that these 'recurrences' are caused by a progressive atrial cardiomyopathy instead of arrhythmogeneity of prior ablative lesions. Copyright © 2017 Elsevier Inc. All rights reserved.

  19. Uncertainty quantification in virtual surgery predictions for single ventricle palliation

    Science.gov (United States)

    Schiavazzi, Daniele; Marsden, Alison

    2014-11-01

    Hemodynamic results from numerical simulations of physiology in patients are invariably presented as deterministic quantities without assessment of associated confidence. Recent advances in cardiovascular simulation and Uncertainty Analysis can be leveraged to challenge this paradigm and to quantify the variability of output quantities of interest, of paramount importance to complement clinical decision making. Physiological variability and errors are responsible for the uncertainty typically associated with measurements in the clinic; starting from a characterization of these quantities in probability, we present applications in the context of estimating the distributions of lumped parameters in 0D models of single-ventricle circulation. We also present results in virtual Fontan palliation surgery, where the variability of both local and systemic hemodynamic indicators is inferred from the uncertainty in pre-operative clinical measurements. Efficient numerical algorithms are required to mitigate the computational cost of propagating the uncertainty through multiscale coupled 0D-3D models of pulsatile flow at the cavopulmonary connection. This work constitutes a first step towards systematic application of robust numerical simulations to virtual surgery predictions.

  20. Expanding palliative care's reach in the community via the elder service agency network.

    Science.gov (United States)

    Reid, M Carrington; Ghesquiere, Angela; Kenien, Cara; Capezuti, Elizabeth; Gardner, Daniel

    2017-08-01

    Over the past two decades, palliative care has established itself as a promising approach to address the complex needs of individuals with advanced illness. Palliative care is well-established in US hospitals and has recently begun to expand outside of the hospital setting to meet the needs of non-hospitalized individuals. Experts have called for the development of innovative community-based models that facilitate delivery of palliative care to this target population. Elder service agencies are important partners that researchers should collaborate with to develop new and promising models. Millions of older adults receive aging network services in the U.S., highlighting the potential reach of these models. Recent health care reform efforts provide support for community-based initiatives, where coordination of care and services, delivered via health and social service agencies, is highly prioritized. This article describes the rationale for developing such approaches, including efforts to educate elder service agency clients about palliative care; training agency staff in palliative care principles; building capacity for elder services providers to screen individuals for palliative care needs; embedding palliative care "champions" in agencies to educate staff and clients and coordinate access to services among those with palliative care needs; and leveraging telehealth resources to conduct comprehensive assessments by hospital palliative care teams for elder service clients who have palliative care needs. We maintain that leveraging the resources of elder service agencies could measurably expand the reach of palliative care in the community.

  1. Achieving consensus and controversy around applicability of palliative care to dementia.

    Science.gov (United States)

    van der Steen, Jenny T; Radbruch, Lukas; de Boer, Marike E; Jünger, Saskia; Hughes, Julian C; Larkin, Phil; Gove, Dianne; Francke, Anneke L; Koopmans, Raymond T C M; Firth, Pam; Volicer, Ladislav; Hertogh, Cees M P M

    2016-01-01

    People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision. To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations. Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable. Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.

  2. Palliative care - shortness of breath

    Science.gov (United States)

    ... this page: //medlineplus.gov/ency/patientinstructions/000471.htm Palliative care - shortness of breath To use the sharing features on this page, please enable JavaScript. Palliative care is a holistic approach to care that focuses ...

  3. Palliative care - fear and anxiety

    Science.gov (United States)

    ... this page: //medlineplus.gov/ency/patientinstructions/000470.htm Palliative care - fear and anxiety To use the sharing features on this page, please enable JavaScript. Palliative care is a holistic approach to care that focuses ...

  4. Palliative Care Training in Cardiology Fellowship: A National Survey of the Fellows.

    Science.gov (United States)

    Dabbouseh, Noura M; Kaushal, Shivtej; Peltier, Wendy; Johnston, Fabian M

    2018-02-01

    To address perspectives of cardiology fellows on the current state of palliative education and palliative and hospice resource utilization within their fellowship experiences. We conducted an online national survey of cardiology fellows during the 2015 to 2016 academic year. Survey questions aimed to assess perceived importance of palliative care education, level of palliative care education during fellowship, and the structure of palliative care support at respondent institutions. Responses were collected anonymously. A total of 519 programs, including subspecialty programs, were contacted. We received 365 responses, a number that represents roughly 14% of all cardiology fellows nationwide during the 2015 to 2016 academic year. Fellows reported discordance in the quality of education between general cardiology and palliative care principles as it relates to care of the patient approaching the end of life. Fellows infrequently received explicit training nor were observed or mentored in delivering end-of-life discussions. Respondents reported an underutilization of palliative care and hospice resources during fellowship training and also a perception that attending faculty were not routinely addressing goals of care. Our survey results highlight a need for enhanced palliative care and end-of-life training experiences for cardiology fellows and also suggest underutilization of hospice and palliative care resources for patients with advanced cardiac diseases. These findings create a platform for future work that might: (1) confirm this training deficit, (2) lead to exploration of educational models that could reconcile this deficit, and (3) potentially help improve palliative care support for patients and families facing advanced heart disease.

  5. Palliative care in heart failure : a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology

    NARCIS (Netherlands)

    Jaarsma, Tiny; Beattie, James M.; Ryder, Mary; Rutten, Frans H.; McDonagh, Theresa; Mohacsi, Paul; Murray, Scott A.; Grodzicki, Thomas; Bergh, Ingrid; Metra, Marco; Ekman, Inger; Angermann, Christiane; Leventhal, Marcia; Pitsis, Antonis; Anker, Stefan D.; Gavazzi, Antonello; Ponikowski, Piotr; Dickstein, Kenneth; Delacretaz, Etienne; Blue, Lynda; Strasser, Florian; McMurray, John

    Heart failure is a serious condition and equivalent to malignant disease in terms of symptom burden and mortality. At this moment only a comparatively small number of heart failure patients receive specialist palliative care. Heart failure patients may have generic palliative care needs, such as

  6. PROGRAM OF PALLIATIVE CANCER CARE – OUR EXPERIENCE

    Directory of Open Access Journals (Sweden)

    Iva Slánská

    2013-01-01

    Full Text Available Introduction: Annually more than 27,000 persons die of cancer in the Czech Republic and the overall incidence of malignancies is still increasing. These data shows the need for affordable and good follow-up care especially for patients without any cancer treatment due to irreversible progression of tumor. Currently the outpatient palliative cancer care gets more into the forefront. Prerequisite for a well working outpatient palliative care is cooperation with general practitioners and home health care agencies. The purpose of the so called program of palliative cancer care is to guide a patient in palliative cancer care and to improve the cooperation among health care providers. Methods: During the period from January 2008 to October 2010 we evaluated in patient without any oncology treatment due to irreversible progression of tumor. Results: In palliative outpatient clinic we treated 446 patients, 119 of them received home care services with average length of 27.8 days. 77 patients died at home, 51 in health facilities and 41 in inpatient hospice care. Conclusion: We present pilot study focusing on outpatient palliative cancer care which shows the real benefit from early indication of palliative cancer care. This type of care allows patients to stay as long as possible at home among their close relatives.

  7. Palliative sedation at end of life - a systematic literature review.

    Science.gov (United States)

    Engström, Joakim; Bruno, Erik; Holm, Birgitta; Hellzén, Ove

    2007-02-01

    Palliative sedation at the end of life to handle unmanageable symptoms has been much debated. A systematic literature review in three phases including a content analysis of 15 articles published between the years 1990 and 2005 has been conducted. The aim was to describe the phenomenon of 'palliative sedation at the end of life' from a nursing perspective. The results can be summarised in three themes: 'Important factors leading to the patient receiving sedation at the end of life', 'Attitudes to palliative sedation at the end of life' and 'Nurses' experience of palliative sedation at the end of a patient's life'. Together, the themes show that palliative sedation is a phenomenon that could be described as sedation given to fewer than 40% of dying patients during their last 4 days of life. It is usually given because of the patient's pain, agitation and/or dyspnoea. Professionals usually have positive attitudes towards it and their view differs from that of the public's view regarding it as continuously deep sedation, whereas the public regards it as being close to euthanasia. Studies focusing on nursing care during palliative sedation are hard to find and this underlines the importance of further research in this area to elucidate the nurses' role during palliative sedation.

  8. Detection of right ventricle thrombosis in patient with Ebstein anomaly of tricuspid valve after Fontan procedure by CT.

    Science.gov (United States)

    Kardos, Marek

    2014-01-01

    A case of a 9-year-old boy with a severe form of Ebstein anomaly who underwent a fenestrated Fontan procedure and exclusion of the tricuspid valve is reported. CT demonstrated the presence of the right ventricular thrombus which was first found on echocardiography and confirmed perioperatively. Copyright © 2014 Society of Cardiovascular Computed Tomography. Published by Elsevier Inc. All rights reserved.

  9. Percutaneous management of a Fontan fenestration: in search for the ideal restriction-occlusion device.

    Science.gov (United States)

    Boshoff, Derize E; Brown, Stephen C; Degiovanni, Joseph; Stumper, Oliver; Wright, John; Mertens, Luc; Gewillig, Marc

    2010-01-01

    Most devices devices available for percutaneous closure of Fontan fenestrations tend to be bulky. The aim of this study was to evaluate a low profile custom made device and assess its efficacy and safety. A 15 mm PFO star was used as the basis. The following modifications were made: removal of the left disc to reduce thrombogenicity in the left atrium, increase the length of the LA legs from 2 by 15 mm to 3 by 20 mm to prevent dislodgement and later adding a pivot between the left and right umbrella. A partial occluder was made by removing two opposite quadrants from the proximal disk. Device deployment was possible in 93% (63 of 68) patients. In five patients, the device could not be deployed and an alternative device was used. In 45 patients complete closure of the fenestration was obtained and saturations increased from 84% +/- 4% to 95% +/- 2% (P partial occlusion: saturations increased from 79% +/- 7% to 90% +/- 4% (P < 0.001); a residual shunt persisted in most patients for several months. No thrombotic events were recorded during follow-up. The modified PFO star device can safely be deployed in Fontan patients to occlude or restrict flow through a fenestration. It has a low profile with minimal foreign material, is non-obstructive and minimally thrombogenic. Copyright 2009 Wiley-Liss, Inc.

  10. The views of patients with brain cancer about palliative care: a qualitative study

    Science.gov (United States)

    Vierhout, M.; Daniels, M.; Mazzotta, P.; Vlahos, J.; Mason, W.P.; Bernstein, M.

    2017-01-01

    Background Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Methods Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Results Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Conclusions Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits. PMID:29270049

  11. The views of patients with brain cancer about palliative care: a qualitative study.

    Science.gov (United States)

    Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M

    2017-12-01

    Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.

  12. Parental concerns in children requiring palliative care

    Directory of Open Access Journals (Sweden)

    Manjiri Dighe

    2008-01-01

    Full Text Available Children with advanced, life-limiting illness have unique needs which are different from those of adults. Pediatric palliative care is an under developed specialty. Aims : To identify concerns of parents of children with advanced, incurable cancers, and to elicit their attitudes toward revealing the diagnosis and prognosis to the sick child. Method : This study was carried out in a large tertiary cancer center in India. Parents of 20 pediatric palliative care patients attending the outpatient department were interviewed and emerging themes identified. Results : Parents showed varying degrees of anticipatory grief. Most families were financially strained. Most parents were reluctant to discuss disease and dying with the child. Siblings were rarely told or directly involved in care. There was resistance to allowing the palliative care team to communicate with the patient. Patients did not receive any formal support. Parents identified family and neighbors as the main sources of support. Conclusions : Parental attitudes hinder open communication with dying children in India. There is a need for research to explore the concerns of families of children with fatal illness. Specialist training is required for professionals working in pediatric palliative care to address this issue.

  13. Do palliative consultations improve patient outcomes?

    Science.gov (United States)

    Casarett, David; Pickard, Amy; Bailey, F Amos; Ritchie, Christine; Furman, Christian; Rosenfeld, Ken; Shreve, Scott; Chen, Zhen; Shea, Judy A

    2008-04-01

    To determine whether inpatient palliative consultation services improve outcomes of care. Retrospective telephone surveys conducted with family members of veterans who received inpatient or outpatient care from a Department of Veterans Affairs (VA) medical facility in the last month of life. Five VA Medical Centers or their affiliated nursing homes and outpatient clinics. Veterans had received inpatient or outpatient care from a participating VA in the last month of life. One family member completed each survey. The telephone survey assessed nine aspects of the care the patient received in his or her last month of life: the patient's well-being and dignity (4 items), adequacy of communication (5 items), respect for treatment preferences (2 items), emotional and spiritual support (3 items), management of symptoms (4 items), access to the inpatient facility of choice (1 item), care around the time of death (6 items), access to home care services (4 items), and access to benefits and services after the patient's death (3 items). Interviews were completed with 524 respondents. In a multivariable linear regression model, after adjusting for the likelihood of receiving a palliative consultation (propensity score), palliative care patients had higher overall scores: 65 (95% confidence interval (CI)=62-66) versus 54 (95% CI=51-56; P<.001) and higher scores for almost all domains. Earlier consultations were independently associated with better overall scores (beta=0.003; P=.006), a difference that was attributable primarily to improvements in communication and emotional support. Palliative consultations improve outcomes of care, and earlier consultations may confer additional benefit.

  14. Resident Perceptions of Palliative Care Training in the Emergency Department

    Science.gov (United States)

    Meo, Nicholas; Morrison, R. Sean

    2011-01-01

    Abstract Objectives To characterize the level of formal training and perceived educational needs in palliative care of emergency medicine (EM) residents. Methods This descriptive study used a 16-question survey administered at weekly resident didactic sessions in 2008 to EM residency programs in New York City. Survey items asked residents to: (1) respond to Likert-scaled statements about the role of palliative care in the emergency department (ED); (2) quantify their level of formal training and personal comfort in symptom management, discussion of bad news and prognosis, legal issues, and withdrawing/withholding therapy; and (3) express their interest in future palliative care training. Results Of 228 total residents, 159 (70%) completed the survey. Of those surveyed, 50% completed some palliative care training before residency; 71.1% agreed or strongly agreed that palliative care was an important competence for an EM physician. However, only 24.3% reported having a “clear idea of the role of palliative care in EM.” The highest self-reported level of formal training was in the area of advanced directives or legal issues at the end of life; the lowest levels were in areas of patient management at the end of life. The highest level of self-reported comfort was in giving bad news and the lowest was in withholding/withdrawing therapy. A slight majority of residents (54%) showed positive interest in receiving future training in palliative care. Conclusions New York City EM residents reported palliative care as an important competency for emergency medicine physicians, yet also reported low levels of formal training in palliative care. The majority of residents surveyed favored additional training. PMID:21291326

  15. Cooperating with a palliative home-care team

    DEFF Research Database (Denmark)

    Goldschmidt, Dorthe; Groenvold, Mogens; Johnsen, Anna Thit

    2005-01-01

    BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one...... month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced...... by 91 %, mainly due to improvement in symptom management, 'security', and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory...

  16. Children's palliative care in low- and middle-income countries.

    Science.gov (United States)

    Downing, Julia; Powell, Richard A; Marston, Joan; Huwa, Cornelius; Chandra, Lynna; Garchakova, Anna; Harding, Richard

    2016-01-01

    One-third of the global population is aged under 20 years. For children with life-limiting conditions, palliative care services are required. However, despite 80% of global need occurring in low- and middle-income countries (LMICs), the majority of children's palliative care (CPC) is provided in high-income countries. This paper reviews the status of CPC services in LMICs--highlighting examples of best practice among service models in Malawi, Indonesia and Belarus--before reviewing the status of the extant research in this field. It concludes that while much has been achieved in palliative care for adults, less attention has been devoted to the education, clinical practice, funding and research needed to ensure children and young people receive the palliative care they need. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  17. [Effect of surgeons on palliative treatment for malignant tumors].

    Science.gov (United States)

    Gu, Jin

    2017-01-25

    For advanced stage tumor patients who can not receive radical treatment, quite a part of them require surgical intervention. Surgeons play a important role and are still the main force in palliative treatment for tumors. But in present medical education system, training contents for surgeon involving palliative treatment are few. In fact, surgeons have responsibilities for improving the quality of life, ameliorating pain, preserving the dignity and relieving symptoms of patients in the palliative treatment of tumors. Surgeons should pay attentions to the communication with patients, play a part of clinical multidisciplinary team and apply reasonable surgical intervention approach. Education of palliative treatment for surgeons should also include medical humanistic concern, and the recognition of effects of medical humanity, ethics, dignity and religion on the recovery of tumor patients.

  18. Inter-Professional Palliative Care

    DEFF Research Database (Denmark)

    Madsen, Kirsten Halskov; Henriksen, Jette; Meldgaard, Anette

    2013-01-01

    Chapter 11 by Kirsten Halskov Madsen, Anette Meldgaard and Jette Henriksen deals with the development of palliative care programmes aimed at the basic level of palliative care practice. The need to develop educational opportunities at particularly this level – described as ‘the basic inter......-professional level of palliative care’ – has been increasing for many years where palliative care has conventionally and primarily been associated with specialist training. As the authors show – based on a mapping out of existing educational initiatives in a region of Denmark, a reading of the curriculum...... and a description of the organization of palliative care – there is a need for such inter-professional palliative care that raises the level of competences at the basic level and the sharing of knowledge as well as securing the continuous qualifying of healthcare staff working with palliative care....

  19. Understanding Palliative Care and Hospice: A Review for Primary Care Providers.

    Science.gov (United States)

    Buss, Mary K; Rock, Laura K; McCarthy, Ellen P

    2017-02-01

    Palliative care provides invaluable clinical management and support for patients and their families. For most people, palliative care is not provided by hospice and palliative medicine specialists, but rather by their primary care providers. The recognition of hospice and palliative medicine as its own medical subspecialty in 2006 highlighted the importance of palliative care to the practice of medicine, yet many health care professionals harbor misconceptions about palliative care, which may be a barrier to ensuring that the palliative care needs of their patients are identified and met in a timely fashion. When physicians discuss end-of-life concerns proactively, many patients choose more comfort-focused care and receive care more aligned with their values and goals. This article defines palliative care, describes how it differs from hospice, debunks some common myths associated with hospice and palliative care, and offers suggestions on how primary care providers can integrate palliative care into their practice. Copyright © 2016 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.

  20. Resources for Educating, Training, and Mentoring All Physicians Providing Palliative Care.

    Science.gov (United States)

    Downar, James

    2018-01-01

    This article presents a rapid review of the published literature and available resources for educating Canadian physicians to provide palliative and end-of-life care. Several key messages emerge from the review. First, there are many palliative care educational resources already available for Canadian physicians. Second, the many palliative care education resources are often not used in physician training. Third, we know that some palliative care educational interventions are inexpensive and scalable, while others are costly and time-consuming; we know very little about which palliative care educational interventions impact physician behavior and patient care. Fourth, two palliative care competency areas in particular can be readily taught: symptom management and communication skill (e.g., breaking bad news and advance care planning). Fifth, palliative care educational interventions are undermined by the "hidden curriculum" in medical education; interventions must be accompanied by continuing education and faculty development to create lasting change in physician behavior. Sixth, undergraduate and postgraduate medical training is shifting from a time-based training paradigm to competency-based training and evaluation. Seventh, virtually every physician in Canada should be able to provide basic palliative care; physicians in specialized areas of practice should receive palliative care education that is tailored to their area, rather than generic educational interventions. For each key message, one or more implications are provided, which can serve as recommendations for a framework to improve palliative care as a whole in Canada.

  1. Palliative care in Russia.

    Science.gov (United States)

    Ivanyushkin, A Y; Khetagurova, A K

    2005-01-01

    The article addresses the history of establishing hospices in Russia complying with international WHO documents. The article also presents the ethics of palliative medicine in the Russian Federation with an objective analysis of the diseases affecting patients with special highlights on social problems.

  2. Palliative care and spirituality

    Directory of Open Access Journals (Sweden)

    Narayanasamy Aru

    2007-01-01

    Full Text Available Critical junctures in patients′ lives such as chronic illnesses and advanced diseases may leave the persons in a state of imbalance or disharmony of body, mind and spirit. With regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness. Empirical evidence suggests that spiritual support may act as an adjunct to the palliative care of those facing advanced diseases and end of life. In this article, the author draws from his empirical work on spirituality and culture to develop a discourse on palliative care and spirituality in both secular and non-secular settings. In doing so, this paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence. Responding to spiritual needs could be challenging, but at the same time it could be rewarding to both healthcare practitioner (HCP and patient in that they may experience spiritual growth and development. Patients may derive great health benefits with improvements in their quality of life, resolutions and meaning and purpose in life. It is hoped that the strategies for spiritual support outlined in this paper serve as practical guidelines to HCPs for development of palliative care in South Asia.

  3. Palliative care in Pakistan.

    Science.gov (United States)

    Khan, Robyna Irshad

    2017-01-01

    Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.

  4. Improved competence after a palliative care course for internal medicine residents

    NARCIS (Netherlands)

    Mulder, S. F.; Bleijenberg, G.; Verhagen, S. C.; Stuyt, P. M. J.; Schijven, M. P.; Tack, C. J.

    2009-01-01

    Residents report that they received inadequate teaching in palliative care and low levels of comfort and skills when taking care of dying patients. This study describes the effects of a problem-based palliative care course on perceived competence and knowledge in a representative Dutch cohort of

  5. Improved competence after a palliative care course for internal medicine residents.

    NARCIS (Netherlands)

    Mulder, S.F.; Bleijenberg, G.; Verhagen, C.A.H.H.V.M.; Stuyt, P.M.J.; Schijven, M.P.; Tack, C.J.J.

    2009-01-01

    Residents report that they received inadequate teaching in palliative care and low levels of comfort and skills when taking care of dying patients. This study describes the effects of a problem-based palliative care course on perceived competence and knowledge in a representative Dutch cohort of

  6. Integrating Speech-Language Pathology Services in Palliative End-of-Life Care

    Science.gov (United States)

    Pollens, Robin D.

    2012-01-01

    Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…

  7. Integrated palliative care in the Spanish context: a systematic review of the literature

    NARCIS (Netherlands)

    Garralda, E.; Hasselaar, J.G.; Carrasco, J.M.; Beek, K.; Siouta, N.; Csikos, A.; Menten, J.; Centeno, C.

    2016-01-01

    BACKGROUND: Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study

  8. Engaging Heart Failure Clinicians To Increase Palliative Care Referrals: Overcoming Barriers, Improving Techniques

    Science.gov (United States)

    Kalman, Jill; Goldstein, Nathan E.

    2014-01-01

    Abstract Background: Heart failure (HF) is the most common cause of hospitalization among adults over the age of 65. Hospital readmission rates, mortality rates, and Medicare costs for patients with this disease are high. Furthermore, patients with HF experience a number of symptoms that worsen as the disease progresses. However, a small minority of patients with HF receives hospice or palliative care. One possible reason for this may be that the HF and palliative care clinicians have differing perspectives on the role of palliative care for these patients. Aim: The goal of the article is to offer palliative care clinicians a roadmap for collaborating with HF clinicians by reviewing the needs of patients with HF. Conclusions: This article reviews the needs of patients with HF and their families, the barriers to referral to palliative care for patients with HF, and provides suggestions for improving collaboration between palliative care and HF clinicians. PMID:24901674

  9. Palliative care as a primary therapeutic approach in advanced dementia: a narrative review.

    Science.gov (United States)

    Zahradnik, Erin K; Grossman, Hillel

    2014-11-01

    The goal of this narrative review was to identify and summarize the ways in which palliative care could benefit patients who have advanced dementia. This case-based discussion article examines current literature on palliative care for dementia. Dementia is an incurable, progressive disease that affects millions of subjects. The prevalence has grown in the last decade and is projected to continue on this trajectory. In the later stages of dementia, subjects require increasing levels of care due to severe cognitive and functional impairment. Although the field of palliative medicine focuses on improving the quality of life of patients with life-limiting illnesses, many patients with advanced dementia do not receive palliative care services. Palliative care has been shown to improve patient and caregiver satisfaction, quality of life, and symptom burden at the end of life. Patients with advanced dementia would benefit from increased access to palliative care. Copyright © 2014 Elsevier HS Journals, Inc. All rights reserved.

  10. Using a Novel In Vitro Fontan Model and Condition-Specific Real-Time MRI Data to Examine Hemodynamic Effects of Respiration and Exercise.

    Science.gov (United States)

    Tree, Michael; Wei, Zhenglun Alan; Trusty, Phillip M; Raghav, Vrishank; Fogel, Mark; Maher, Kevin; Yoganathan, Ajit

    2017-10-24

    Several studies exist modeling the Fontan connection to understand its hemodynamic ties to patient outcomes (Chopski in: Experimental and Computational Assessment of Mechanical Circulatory Assistance of a Patient-Specific Fontan Vessel Configuration. Dissertation, 2013; Khiabani et al. in J Biomech 45:2376-2381, 2012; Taylor and Figueroa in Annu Rev Biomed 11:109-134, 2009; Vukicevic et al. in ASAIO J 59:253-260, 2013). The most patient-accurate of these studies include flexible, patient-specific total cavopulmonary connections. This study improves Fontan hemodynamic modeling by validating Fontan model flexibility against a patient-specific bulk compliance value, and employing real-time phase contrast magnetic resonance flow data. The improved model was employed to acquire velocity field information under breath-held, free-breathing, and exercise conditions to investigate the effect of these conditions on clinically important Fontan hemodynamic metrics including power loss and viscous dissipation rate. The velocity data, obtained by stereoscopic particle image velocimetry, was visualized for qualitative three-dimensional flow field comparisons between the conditions. Key hemodynamic metrics were calculated from the velocity data and used to quantitatively compare the flow conditions. The data shows a multi-factorial and extremely patient-specific nature to Fontan hemodynamics.

  11. Implementing Routine Palliative Care Consultation Prior to LVAD Implantation: A Single Center Experience.

    Science.gov (United States)

    Salomon, Say; Frankel, Hilary; Chuang, Elizabeth; Eti, Serife; Selwyn, Peter

    2018-01-04

    Left-ventricular assist devices (LVADs) are increasingly used to improve quality of life for end-stage heart failure patients. The Joint Commission now requires pre-implantation palliative care assessment, however many palliative care teams have little experience providing this service. To describe the integration of palliative services at one Center of Excellence for Heart and Vascular Care. This is a retrospective chart review of all patients receiving LVADs at a single urban academic medical center from 1/2015 to 9/2016. Palliative care needs and services provided are described. Two case presentations illustrate the collaboration between the cardiothoracic and palliative care teams. 51 patients were included. Of those, 28 received a palliative care consultation during this roll-out period. The rate of consultation rose from 35% to 71% as work flows improved with institutional commitment. Symptom assessment, psychosocial assessment and advance care planning (ACP) were always performed (n=28, 100%). More than half of patients were evaluated for dyspnea (n=20, 71%), fatigue (n=18, 64%) and pain (n=16, 57%). Consults centered around ACP, and very few patients (n=7, 25%) required palliative care follow up. Palliative consultation did not delay LVAD placement. Although palliative care consultants provided initial evaluation and management of multiple symptoms, there was not a large ongoing need. Integration of palliative services into the care of patients receiving LVADs can be incorporated into the workflow of the cardiothoracic and palliative care teams, resulting in improved ACP for all patients receiving LVADs and better care coordination for patients at end of life. Copyright © 2018. Published by Elsevier Inc.

  12. Danish Palliative Care Database

    Science.gov (United States)

    Groenvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang

    2016-01-01

    Aims The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. Main variables The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. Descriptive data In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness. PMID:27822111

  13. Palliative Care Development in Kyrgyzstan.

    Science.gov (United States)

    Mukambetov, Aibek; Sabyrbekova, Taalaigul; Asanalieva, Lola; Sadykov, Ilim; Connor, Stephen R

    2018-02-01

    Palliative care began in Kyrgyzstan in 2005 as a pilot home-based care program in Osh Cancer Center and was supported by a small group of nurses and one physician from Scotland. In 2010, the Soros Foundation-Kyrgyzstan and the Open Society Foundation's International Palliative Care Initiative began supporting work on palliative care policy, legislation, essential medicine availability, education, advocacy, and implementation. A Ministry of Health working group was established to lead this initiative, and technical assistance was provided by an international palliative care consultant. Work began with a national needs assessment, which identified the existing barriers to the provision of quality palliative care, and recommendations were made to the working group to address these challenges. Today, palliative care is included in many national health care policies and laws, a national palliative care association has been established, undergraduate medical and nursing education include elements of palliative care, oral morphine and fentanyl patches are now available in parts of the country, inpatient services exist in the National Cancer Center in Osh and Bishkek, two tuberculosis hospitals with multidrug resistant/extensively drug resistant, and home care services in Osh and Bishkek. Public information campaigns and advocacy activities continue to increase public awareness about palliative care and press government action. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  14. [Depression in palliative care: prevalence and assessment].

    Science.gov (United States)

    Julião, Miguel; Barbosa, António

    2011-12-01

    Depression is the most common mental health problem in palliative care, yet it's widely misunderstood, underdiagnosed, undertreated and considered a complex medical task. Psychological distress is a major cause of suffering among patients and families and it's highly correlated with reduced quality of life and amplification of pain. Terminally-ill individuals who suffer from depression are also at high risk of suicide and desire for a hastened death. Every patient receiving palliative care should receive a complete personal and familial psychiatric history, with risk factors, as well as the typical signs and symptoms in the terminal disease. There are two different approaches to assess depression in palliative care: Categorial vs Dimensional The Hospital Anxiety and Depression Scale (HADS) is the most used assessment method for depression in advanced disease and it's validated to the Portuguese population. HADS overcomes the biggest problem when evaluating depression in the terminally-ill: the influence of somatic symptoms due to the underlying disease on the results of the depression scales. In this article we revise other approaches for the assessment of depression in advanced disease: single question vs two-item question; structured clinical interview and diagnostic criteria. Clinicians who care for terminally-ill patients must develop competences on the psychological area, developing state-of-the-art clinical skills that provide quality of life and comfort to patients and their families.

  15. Is Palliative Care Right for You?

    Science.gov (United States)

    ... For Policymakers For Family Caregivers Glossary Menu Is Palliative Care Right for You? Answer the following questions to ... medical advice, diagnosis or treatment. What Is Palliative Care Definition Pediatric Palliative Care Disease Types FAQ Handout for Patients and ...

  16. [Palliative care for persons with dementia].

    Science.gov (United States)

    Huang, Hsiu-Li; Weng, Li-Chueh; Yeh, Mei Chang

    2011-02-01

    Dementia is irreversible. Although currently available drugs are typically able to ameliorate symptoms and slow down its progress, there is yet no known cure for this disease. The inevitable consequence of dementia is the gradual deterioration of the condition until final decline into the end of life stage. The priority care plan for patients with end stage dementia, therefore, must focus on palliative care that provides for a comfortable and high as possible quality of life. However, dementia is rarely looked upon as an end-stage disease. In 2009, the Taiwan National Health Insurance began reimbursing the costs of hospice care for patients with end stage dementia. This paper discusses end stage dementia cases in which patients received inappropriate interventions during their final days as well as the barriers faced in developing countries to providing palliative care. This paper also suggests strategies to promote quality of care and quality of life in people with end of life dementia.

  17. Perioperative Considerations for Children With Right Ventricular Dysfunction and Failing Fontan.

    Science.gov (United States)

    Riveros, Ricardo; Riveros-Perez, Efrain

    2015-09-01

    The survival of patients with congenital heart diseases (CHD) has increased in the past decades, resulting in the identification of new characteristics of chronic comorbidities observed in pediatric and adults with CHD. Patients with CHD can present with a broad clinical spectrum of manifestations of congestive heart failure (CHF) at any point throughout their lives that may be related to anatomical or surgical variables. This article focuses on the perioperative assessment of patients with CHD and CHF, with an emphasis on pathophysiologic, diagnostic, and therapeutic alternatives in patients with right ventricular failure and failing Fontan circulation. We also provide descriptions of the effects of sedatives and anesthetics commonly used in this population in diagnostic or invasive procedures. © The Author(s) 2015.

  18. Palliative care for advanced dementia: Knowledge and attitudes of long-term care staff.

    Science.gov (United States)

    Chen, I-Hui; Lin, Kuan-Yu; Hu, Sophia H; Chuang, Yeu-Hui; Long, Carol O; Chang, Chia-Chi; Liu, Megan F

    2018-02-01

    To investigate the knowledge of and attitudes towards palliative care for advanced dementia and their associations with demographics among nursing staff, including nurses and nursing assistants, in long-term care settings. Nursing facilities are places where persons with dementia die; therefore, providing quality end-of-life care to residents with advanced dementia is crucial. To date, little attention has been paid to palliative care practice for patients with advanced dementia. A descriptive, cross-sectional, survey design was used. In total, a sample of 300 nurses (n = 125) and nursing assistants (n = 175) working in long-term care settings in Taiwan participated in this study. Two instruments were administered: demographic characteristics and responses to the Questionnaire of Palliative Care for Advanced Dementia. Descriptive statistics and multiple regression were used for data analysis. Overall, the nurses and nursing assistants had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Additionally, nursing staff who were nurses with greater work experience and those who had received palliative care and hospice training had greater knowledge of palliative care. In addition, nursing staff who had received dementia care training and who had worked in nursing homes had higher levels of positive attitudes towards palliative care. This study indicates the need to provide nurses and nursing assistants with more information about palliative care practice for people with advanced dementia. Particularly, providing education to those who are nursing assistants, who have less working experience, who have not received palliative and dementia care training, and who have not worked in nursing homes can improve overall nursing staff knowledge of and attitudes towards palliative care. Continuing education in principles of palliative care for advanced dementia is necessary for currently practicing nursing staff and

  19. Generalist palliative care in hospital

    DEFF Research Database (Denmark)

    Bergenholtz, Heidi; Jarlbæk, Lene; Hølge-Hazelton, Bibi

    2016-01-01

    Background: It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-orientedtreatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactionsthat occur is sparse. Aim......: To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, ifpossible, to suggest workable solutions for the provision of generalist palliative care. Design: A convergent parallel mixed-methods design was chosen using two independent studies...... hospital with 29 department managements and one hospital management. Results: Two overall themes emerged: (1) ‘generalist palliative care as a priority at the hospital’, suggesting contrasting issues regardingprioritisation of palliative care at different organisational levels, and (2) ‘knowledge and use...

  20. Structural cerebral abnormalities and neurodevelopmental status in single ventricle congenital heart disease before Fontan procedure.

    Science.gov (United States)

    Knirsch, Walter; Mayer, Kristina Nadine; Scheer, Ianina; Tuura, Ruth; Schranz, Dietmar; Hahn, Andreas; Wetterling, Kristina; Beck, Ingrid; Latal, Beatrice; Reich, Bettina

    2017-04-01

    Neonates with single ventricle congenital heart disease are at risk for structural cerebral abnormalities. Little is known about the further evolution of cerebral abnormalities until Fontan procedure. Between August 2012 and July 2015, we conducted a prospective cross-sectional two centre study using cerebral magnetic resonance imaging (MRI) and neuro-developmental outcome assessed by the Bayley-III. Forty-seven children (31 male) were evaluated at a mean age of 25.9 ± 3.4 months with hypoplastic left heart syndrome (25) or other single ventricle (22). Cerebral MRI was abnormal in 17 patients (36.2%) including liquor space enlargements (10), small grey (9) and minimal white (5) matter injuries. Eight of 17 individuals had combined lesions. Median (range) cognitive composite score (CCS) (100, 65-120) and motor composite score (MCS) (97, 55-124) were comparable to the reference data, while language composite score (LCS) (97, 68-124) was significantly lower ( P  = 0.040). Liquor space enlargement was associated with poorer performance on all Bayley-III subscores (CCS: P  = 0.02; LCS: P  = 0.002; MCS: P  = 0.013). The number of re-operations [odds ratio (OR) 2.2, 95% confidence interval (CI) 1.1-4.3] ( P  = 0.03) and re-interventions (OR 2.1, 95% CI 1.1-3.8) ( P  = 0.03) was associated with a higher rate of overall MRI abnormalities. Cerebral MRI abnormalities occur in more than one third of children with single ventricle, while the neuro-developmental status is less severely affected before Fontan procedure. Liquor space enlargement is the predominant MRI finding associated with poorer neuro-developmental status, warranting further studies to determine aetiology and further evolution until school-age.

  1. Opioid errors in inpatient palliative care services: a retrospective review.

    Science.gov (United States)

    Heneka, Nicole; Shaw, Tim; Rowett, Debra; Lapkin, Samuel; Phillips, Jane L

    2018-01-04

    Opioids are a high-risk medicine frequently used to manage palliative patients' cancer-related pain and other symptoms. Despite the high volume of opioid use in inpatient palliative care services, and the potential for patient harm, few studies have focused on opioid errors in this population. To (i) identify the number of opioid errors reported by inpatient palliative care services, (ii) identify reported opioid error characteristics and (iii) determine the impact of opioid errors on palliative patient outcomes. A 24-month retrospective review of opioid errors reported in three inpatient palliative care services in one Australian state. Of the 55 opioid errors identified, 84% reached the patient. Most errors involved morphine (35%) or hydromorphone (29%). Opioid administration errors accounted for 76% of reported opioid errors, largely due to omitted dose (33%) or wrong dose (24%) errors. Patients were more likely to receive a lower dose of opioid than ordered as a direct result of an opioid error (57%), with errors adversely impacting pain and/or symptom management in 42% of patients. Half (53%) of the affected patients required additional treatment and/or care as a direct consequence of the opioid error. This retrospective review has provided valuable insights into the patterns and impact of opioid errors in inpatient palliative care services. Iatrogenic harm related to opioid underdosing errors contributed to palliative patients' unrelieved pain. Better understanding the factors that contribute to opioid errors and the role of safety culture in the palliative care service context warrants further investigation. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  2. Grief and Palliative Care: Mutuality

    OpenAIRE

    Moon, Paul J

    2013-01-01

    Grief and palliative care are interrelated and perhaps mutually inclusive. Conceptually and practically, grief intimately relates to palliative care, as both domains regard the phenomena of loss, suffering, and a desire for abatement of pain burden. Moreover, the notions of palliative care and grief may be construed as being mutually inclusive in terms of one cueing the other. As such, the discussions in this article will center on the conceptualizations of the mutuality between grief and pal...

  3. Innovative palliative care in Edmonton.

    OpenAIRE

    Fainsinger, R. L.; Bruera, E.; MacMillan, K.

    1997-01-01

    PROBLEM BEING ADDRESSED: Access to palliative care in Edmonton has been hampered by uneven development, poor distribution of services, and more recently, economic restraints. Family physicians' involvement in palliative care has been hindered by the variety of access points, poor coordination, and inadequate reimbursement for time-consuming and difficult patient care situations. OBJECTIVE OF PROGRAM: To provide high-quality palliative care throughout Edmonton in all settings, with patients ab...

  4. The Palliative Care Information Act and Access to Palliative Care in Terminally ill Patients: A Retrospective Study.

    Science.gov (United States)

    Victoria, Kitty; Patel, Sarita

    2016-01-01

    Studies have shown that over 50% of end-of-life discussions take place for the first time in the hospital and that terminally ill patients often have unrealistic views regarding the possible scope of treatment. The Palliative Care information Act (PCIA) was passed in an attempt to address the lack of access for terminally ill patients to palliative care services. A multi-database systematic review was performed on published studies from 2010 to present, and there were none found measuring the effectiveness of the PCIA. We aimed to study the effect of the PCIA on access to palliative care services. We conducted a retrospective chart review of all terminally ill patients who died at Kingsbrook Jewish Medical Center from January 2010 to August 2013 in relation to passing of the PCIA. Prelaw (prior to the law passing), 12.3% of the terminal patients received palliative care consults, 25% during the transition period (time between passing of law and when it came into effect) and 37.7% postlaw (after coming into effect) (P access to palliative care services and can change the culture of a hospital to be more pro-palliative for the appropriate populations.

  5. Palliative interventions for hepatocellular carcinoma patients: analysis of the National Cancer Database.

    Science.gov (United States)

    Hammad, Abdulrahman Y; Robbins, Jared R; Turaga, Kiran K; Christians, Kathleen K; Gamblin, T Clark; Johnston, Fabian M

    2017-01-01

    Palliative therapies are provided to a subset of hepatocellular carcinoma (HCC) patients with the aim of providing symptomatic relief, better quality of life and improved survival. The present study sought to assess and compare the efficacy of different palliative therapies for HCC. The National Cancer Database (NCDB), a retrospective national database that captures approximately 70% of all patients treated for cancer in the US, was queried for patients with HCC who were deemed unresectable from 1998-2011. Patients were stratified by receipt of palliative therapy. Survival analysis was examined by log-rank test and Kaplan Meier curves, and a multivariate proportional hazards model was utilized to identify the predictors of survival. A total of 3,267 patients were identified; 287 (8.7%) received surgical palliation, 827 (25.3%) received radiotherapy (RT), 877 (26.8%) received chemotherapy, 1,067 (32.6%) received pain management therapy, while 209 (6.4%) received a combination of the previous three modalities. On multivariate analysis palliative RT was identified as a positive predictor of survival [hazards ratio (HR) 0.65; 95% CI, 0.50-0.83]. Stratifying by disease stage, palliative RT provided a significant survival benefit for patients with stage IV disease. Palliative RT appears to extend survival and should be considered for patients presenting with late stage HCC.

  6. Integrated palliative care networks from the perspectives of patients: A cross-sectional explorative study in five European countries.

    Science.gov (United States)

    den Herder-van der Eerden, Marlieke; Ebenau, Anne; Payne, Sheila; Preston, Nancy; Radbruch, Lukas; Linge-Dahl, Lisa; Csikos, Agnes; Busa, Csilla; Van Beek, Karen; Groot, Marieke; Vissers, Kris; Hasselaar, Jeroen

    2018-02-01

    Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals' perspectives. (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction. Cross-sectional explorative design. We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands. About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians ( p palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient's care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Palliative care professionals are not always present or recognised as such in patients' care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.

  7. Evaluation of blood flow distribution asymmetry and vascular geometry in patients with Fontan circulation using 4-D flow MRI

    Energy Technology Data Exchange (ETDEWEB)

    Jarvis, Kelly; Markl, Michael [Northwestern University, Department of Radiology, Feinberg School of Medicine, Chicago, IL (United States); Northwestern University, Department of Biomedical Engineering, McCormick School of Engineering, Chicago, IL (United States); Schnell, Susanne; Barker, Alex J.; Garcia, Julio; Chowdhary, Varun; Carr, James [Northwestern University, Department of Radiology, Feinberg School of Medicine, Chicago, IL (United States); Lorenz, Ramona [University Medical Center Freiburg, Department of Radiology, Freiburg (Germany); Rose, Michael [Ann and Robert H. Lurie Children' s Hospital of Chicago, Department of Medical Imaging, Chicago, IL (United States); Robinson, Joshua D. [Northwestern University, Department of Pediatrics, Feinberg School of Medicine, Chicago, IL (United States); Ann and Robert H. Lurie Children' s Hospital of Chicago, Division of Cardiology, Chicago, IL (United States); Rigsby, Cynthia K. [Northwestern University, Department of Radiology, Feinberg School of Medicine, Chicago, IL (United States); Ann and Robert H. Lurie Children' s Hospital of Chicago, Department of Medical Imaging, Chicago, IL (United States)

    2016-10-15

    Asymmetrical caval to pulmonary blood flow is suspected to cause complications in patients with Fontan circulation. The aim of this study was to test the feasibility of 4-D flow MRI for characterizing the relationship between 3-D blood flow distribution and vascular geometry. We hypothesized that both flow distribution and geometry can be calculated with low interobserver variability and will detect a direct relationship between flow distribution and Fontan geometry. Four-dimensional flow MRI was acquired in 10 Fontan patients (age: 16 ± 4 years [mean ± standard deviation], range: 9-21 years). The Fontan connection was isolated by 3-D segmentation to evaluate flow distribution from the inferior vena cava (IVC) and superior vena cava (SVC) to the left and right pulmonary arteries (LPA, RPA) and to characterize geometry (cross-sectional area, caval offset, vessel angle). Flow distribution results indicated SVC flow tended toward the RPA while IVC flow was more evenly distributed (SVC to RPA: 78% ± 28 [9-100], IVC to LPA: 54% ± 28 [4-98]). There was a significant relationship between pulmonary artery cross-sectional area and flow distribution (IVC to RPA: R{sup 2}=0.50, P=0.02; SVC to LPA: R{sup 2}=0.81, P=0.0004). Good agreement was found between observers and for flow distribution when compared to net flow values. Four-dimensional flow MRI was able to detect relationships between flow distribution and vessel geometry. Future studies are warranted to investigate the potential of patient specific hemodynamic analysis to improve diagnostic capability. (orig.)

  8. Virtual surgical planning, flow simulation, and 3-dimensional electrospinning of patient-specific grafts to optimize Fontan hemodynamics.

    Science.gov (United States)

    Siallagan, Dominik; Loke, Yue-Hin; Olivieri, Laura; Opfermann, Justin; Ong, Chin Siang; de Zélicourt, Diane; Petrou, Anastasios; Daners, Marianne Schmid; Kurtcuoglu, Vartan; Meboldt, Mirko; Nelson, Kevin; Vricella, Luca; Johnson, Jed; Hibino, Narutoshi; Krieger, Axel

    2017-12-05

    Despite advances in the Fontan procedure, there is an unmet clinical need for patient-specific graft designs that are optimized for variations in patient anatomy. The objective of this study is to design and produce patient-specific Fontan geometries, with the goal of improving hepatic flow distribution (HFD) and reducing power loss (Ploss), and manufacturing these designs by electrospinning. Cardiac magnetic resonance imaging data from patients who previously underwent a Fontan procedure (n = 2) was used to create 3-dimensional models of their native Fontan geometry using standard image segmentation and geometry reconstruction software. For each patient, alternative designs were explored in silico, including tube-shaped and bifurcated conduits, and their performance in terms of Ploss and HFD probed by computational fluid dynamic (CFD) simulations. The best-performing options were then fabricated using electrospinning. CFD simulations showed that the bifurcated conduit improved HFD between the left and right pulmonary arteries, whereas both types of conduits reduced Ploss. In vitro testing with a flow-loop chamber supported the CFD results. The proposed designs were then successfully electrospun into tissue-engineered vascular grafts. Our unique virtual cardiac surgery approach has the potential to improve the quality of surgery by manufacturing patient-specific designs before surgery, that are also optimized with balanced HFD and minimal Ploss, based on refinement of commercially available options for image segmentation, computer-aided design, and flow simulations. Copyright © 2017 The American Association for Thoracic Surgery. Published by Elsevier Inc. All rights reserved.

  9. Intensive Care Unit Outcomes Among Patients With Cancer After Palliative Radiation Therapy.

    Science.gov (United States)

    Kruser, Jacqueline M; Rakhra, Sunpreet S; Sacotte, Ryan M; Wehbe, Firas H; Rademaker, Alfred W; Wunderink, Richard G; Kruser, Tim J

    2017-11-15

    To inform goals of care discussions at the time of palliative radiation therapy (RT) consultation, we sought to characterize intensive care unit (ICU) outcomes for patients treated with palliative RT compared to all other patients with metastatic cancer admitted to the ICU. We conducted a retrospective cohort study of patients with metastatic cancer admitted to an ICU in a tertiary medical center from January 2010 to September 2015. We compared in-hospital mortality between patients who received palliative RT in the 12 months before admission and all other patients with metastatic cancer. We used multivariable logistic regression to evaluate the association between receipt of palliative RT and in-hospital mortality, adjusting for patient characteristics and acute illness severity. Among 1424 patients with metastatic cancer, 11.3% (n=161) received palliative RT before ICU admission. In-hospital mortality was 36.7% for palliative RT patients, compared with 16.6% for other patients with metastatic cancer (Ppalliative RT was associated with increased in-hospital mortality (odds ratio 2.08, 95% confidence interval 1.34-3.21, P=.001), after adjusting for patient characteristics and severity of critical illness. Only 34 patients (21.1%) treated with palliative RT received additional cancer-directed treatment after ICU admission. For patients with metastatic cancer, prior treatment with palliative RT is associated with increased in-hospital mortality after ICU admission. Nearly half of patients previously treated with palliative RT either died during hospitalization or were discharged with hospice care, and few received further cancer-directed therapy. Palliative RT referral may represent an opportunity to discuss end-of-life treatment preferences with patients and families. Copyright © 2017 Elsevier Inc. All rights reserved.

  10. Assessment of knowledge in palliative care of physical therapists students at a university hospital in Brazil.

    Science.gov (United States)

    Zalaf, Livia R; Bianchim, Mayara S; Alveno, Daniel A

    In Brazil there are several challenges to reach a humanized health care. Among them is the well-known lack in academic education and training in palliative care field. This lack is mostly due to the modern medical care culture that prioritize curative medicine ahead of palliative care. As the goal of saving lives is rooted in medical training, death is still confronted as the main enemy of the health professionals. To analyze the knowledge of palliative care among the physical therapists of a University Hospital. This is a cross-sectional and descriptive study. The volunteers were physical therapists, who had worked in the hospital for more than six months, were included undergraduate students, experienced professionals and graduate students. A questionnaire with closed questions about palliative care was applied during the volunteers working hours. Data were analyzed descriptively. We conclude that, the vast majority of the evaluated professionals presented basic palliative care knowledge, but not in palliative care core components. The palliative care practice seemed often guided by the knowledge acquired in other fields, always with an intuitive character. Therefore, we detected a lack in the physical therapist training regarding palliative care. Summarily, physical therapists should receive a general training in palliative care still as an undergraduate, for a more effective and consistent professional practice later on. Copyright © 2017 Associação Brasileira de Pesquisa e Pós-Graduação em Fisioterapia. Publicado por Elsevier Editora Ltda. All rights reserved.

  11. Design and implementation of an online course on research methods in palliative care: lessons learned.

    Science.gov (United States)

    Spice, Ron; Palacios, Moné; Biondo, Patricia D; Hagen, Neil A

    2011-04-01

    Research capacity in palliative and end-of-life care is less than some other fields of medicine where there is a longer track record of biomedical research. Palliative medicine clinicians often receive little or no formal research training during their postgraduate education; hence, education efforts may prove pivotal to increasing palliative care research capacity. To that end, our group established a national online training program on palliative care research methodologies, called Foundations of Palliative Care Research. This report describes the development and implementation of the course, and its evaluation. To inform decisions on the overall course objectives, length, design, and implementation, formal needs assessments were conducted through surveys of Canadian palliative medicine residency program directors and of Canadian palliative medicine residents. A 12-week, online, module-based course was designed. The first iteration of the course was offered to English-speaking palliative medicine residents from across Canada between October 2008 and March 2009. The course utilized Web-based communication methods, and was delivered using a combination of asynchronous and synchronous learning strategies and activities. Ten palliative care residents from different parts of the country registered and all completed the course with passing marks. Participants evaluated the course through a post course survey. The formal evaluation of the course, along with successes, challenges, and lessons applicable to future ventures, are discussed.

  12. "Not the 'grim reaper service'": an assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure.

    Science.gov (United States)

    Kavalieratos, Dio; Mitchell, Emma M; Carey, Timothy S; Dev, Sandesh; Biddle, Andrea K; Reeve, Bryce B; Abernethy, Amy P; Weinberger, Morris

    2014-01-02

    Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative care providers to impede palliative care referral for HF patients. We conducted semistructured interviews regarding (1) perceived needs of patients with advanced HF; (2) knowledge, attitudes, and experiences with specialist palliative care; (3) perceived indications for and optimal timing of palliative care referral in HF; and (4) perceived barriers to palliative care referral. Two investigators analyzed data using template analysis, a qualitative technique. We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF-related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care. Nevertheless, providers expressed interest for integrating palliative care into traditional HF care, but were unsure of how to initiate collaboration. Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death. These factors represent potentially modifiable targets for provider education, which may help to improve palliative care referral for HF patients with unresolved disease-related burden.

  13. Towards a Tissue-Engineered Contractile Fontan-Conduit: The Fate of Cardiac Myocytes in the Subpulmonary Circulation.

    Directory of Open Access Journals (Sweden)

    Daniel Biermann

    Full Text Available The long-term outcome of patients with single ventricles improved over time, but remains poor compared to other congenital heart lesions with biventricular circulation. Main cause for this unfavourable outcome is the unphysiological hemodynamic of the Fontan circulation, such as subnormal systemic cardiac output and increased systemic-venous pressure. To overcome this limitation, we are developing the concept of a contractile extracardiac Fontan-tunnel. In this study, we evaluated the survival and structural development of a tissue-engineered conduit under in vivo conditions. Engineered heart tissue was generated from ventricular heart cells of neonatal Wistar rats, fibrinogen and thrombin. Engineered heart tissues started beating around day 8 in vitro and remained contractile in vivo throughout the experiment. After culture for 14 days constructs were implanted around the right superior vena cava of Wistar rats (n = 12. Animals were euthanized after 7, 14, 28 and 56 days postoperatively. Hematoxylin and eosin staining showed cardiomyocytes arranged in thick bundles within the engineered heart tissue-conduit. Immunostaining of sarcomeric actin, alpha-actin and connexin 43 revealed a well -developed cardiac myocyte structure. Magnetic resonance imaging (d14, n = 3 revealed no constriction or stenosis of the superior vena cava by the constructs. Engineered heart tissues survive and contract for extended periods after implantation around the superior vena cava of rats. Generation of larger constructs is warranted to evaluate functional benefits of a contractile Fontan-conduit.

  14. Development of a thermodynamic control system for the Fontan circulation pulsation device using shape memory alloy fibers.

    Science.gov (United States)

    Yamada, Akihiro; Shiraishi, Yasuyuki; Miura, Hidekazu; Hashem, Hashem Mohamed Omran; Tsuboko, Yusuke; Yamagishi, Masaaki; Yambe, Tomoyuki

    2015-09-01

    The Fontan procedure is one of the common surgical treatments for circulatory reconstruction in pediatric patients with congenital heart disease. In Fontan circulation, low pulsatility may induce localized lung ischemia and may impair the development of pulmonary peripheral endothelial cells. To promote pulmonary circulation in Fontan circulation, we have been developing a pediatric pulmonary circulatory pulsation device using shape memory alloy fibers attached from the outside of total cavopulmonary connection. In this study, we developed a new thermal control system for the device and examined its functions. We mounted on the device 16 fibers connected in parallel around an ePTFE graft circumferentially. To provide optimized contraction, we designed the new thermal control system. The system consisted of a thermistor, a pressure sensor, and a regulator that was controlled by the adaptive thermodynamic transfer functions. We monitored the parameters and calculated heat transfer function as well as pressure distribution on the graft surface. Then we examined and compared the dynamic contractile pressure and changes in surface temperature. As a result, by the application of the control based on the new feedback system analysis, the circumferential contractile pressure increased by 35%. The adaptive thermodynamic regulation was useful for the selection of alternative thresholds of the surface temperature of the graft. The system could achieve effective contraction for the pulsatile flow generation by the device.

  15. A Summary of Pediatric Palliative Care Team Structure and Services as Reported by Centers Caring for Children with Cancer.

    Science.gov (United States)

    Weaver, Meaghann S; Rosenberg, Abby R; Tager, Julia; Wichman, Christopher S; Wiener, Lori

    2017-11-27

    Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup. A total of 142 surveys were completed with representation from 18 countries and 39 states. Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level. Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.

  16. The role of radiation therapy in palliative care of children with advanced cancer: Clinical outcomes and patterns of care.

    Science.gov (United States)

    Varma, Sumeeta; Friedman, Debra L; Stavas, Mark J

    2017-05-01

    There are few published data to guide the use and timing of palliative radiation therapy (RT) in children. We aimed to determine the clinical outcomes of palliative RT in children and the relationship with palliative care and hospice referrals. A retrospective chart review was performed on all patients younger than 18 years who received palliative RT in our clinic from January 2005 to January 2015. In the specified time period, 50 children underwent 83 courses of palliative RT. Median survival after treatment was 124 days (range, 1-1141 days). Fifteen courses were delivered to children in the last 30 days of life (dol). Palliative RT was successful in 89% of courses delivered before the last 30 dol versus 28% of courses delivered in the last 30 dol (p palliative RT were also referred to our institution's pediatric palliative care team or to hospice at some time in their course. Of the children who died, 74% were referred to hospice and 34% were on hospice while receiving palliative RT. For children not already on hospice, the median time to hospice referral was 96 days after the last fraction (range, 0-924 days). Palliative RT is effective in children with advanced cancer, although less so in the last 30 dol. With careful care coordination and multidisciplinary collaboration, RT can be successfully integrated into supportive and end-of-life care for children with advanced cancer. © 2016 Wiley Periodicals, Inc.

  17. Psychosocial issues in palliative care

    African Journals Online (AJOL)

    Repro

    MAIN TOPIC. C M E May 2003 Vol.21 No.5 249. Ever since the original concept of total pain, with its physical, emotional, social and spiritual components, the demands of palliative care have been met by expand- ing expertise. Palliative care is a team effort and its impact is unique in that it results from a combination of skills.

  18. Training Physicians in Palliative Care.

    Science.gov (United States)

    Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.

    1999-01-01

    Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)

  19. Mindfulness for palliative care patients. Systematic review.

    Science.gov (United States)

    Latorraca, Carolina de Oliveira Cruz; Martimbianco, Ana Luiza Cabrera; Pachito, Daniela Vianna; Pacheco, Rafael Leite; Riera, Rachel

    2017-11-06

    Nineteen million adults worldwide are in need of palliative care. Of those who have access to it, 80% fail to receive an efficient management of symptoms. To assess the effectiveness and safety of mindfulness meditation for palliative care patients. We searched CENTRAL, MEDLINE, Embase, LILACS, PEDro, CINAHL, PsycINFO, Opengrey, ClinicalTrials.gov and WHO-ICTRP. No restriction of language, status or date of publication was applied. We considered randomised clinical trials (RCTs) comparing any mindfulness meditation scheme vs any comparator for palliative care. Cochrane Risk of Bias (Rob) Table was used for assessing methodological quality of RCTs. Screening, data extraction and methodological assessments were performed by two reviewers. Mean differences (MD) (confidence intervals of 95% (CI 95%)) were considered for estimating effect size. Quality of evidence was appraised by GRADE. Four RCTs, 234 participants, were included. All studies presented high risk of bias in at least one RoB table criteria. We assessed 4 comparisons, but only 2 studies showed statistically significant difference for at least one outcome. 1. Mindfulness meditation (eight weeks, one session/week, daily individual practice) vs control: statistically significant difference in favour of control for quality of life - physical aspects. 2. Mindfulness meditation (single 5-minute session) vs control: benefit in favour of mindfulness for stress outcome in both time-points. None of the included studies analysed safety and harms outcomes. Although two studies have showed statistically significant difference, only one showed effectiveness of mindfulness meditation in improving perceived stress. This study focused on one single session of mindfulness of 5 minutes for adult cancer patients in palliative care, but it was considered as possessing high risk of bias. Other schemes of mindfulness meditation did not show benefit in any outcome evaluated (low and very low quality evidence). © 2017 John Wiley

  20. Role of palliative radiotherapy in brain metastases

    Directory of Open Access Journals (Sweden)

    Ramesh S Bilimagga

    2009-01-01

    Full Text Available Background: Brain metastases are a common manifestation of systemic cancer and exceed primary brain tumors in number and are a significant cause of neurologic problems. They affect 20-40% of all cancer patients. Aggressive management of brain metastases is effective in both symptom palliation and prolonging the life. Radiotherapy has a major role to play in the management of brain metastases. AIM: The aim of the study was to know the outcome of palliative radiotherapy in symptomatic brain metastases in terms of improvement in their performance status. Materials and Methods: This is a retrospective study of 63 patients diagnosed to have brain metastases and treated with palliative whole brain radiotherapy to a dose of 30 Gy in 10 fractions over two weeks between June 1998 and June 2007. Diagnosis was done in most of the cases with computed tomography scan and in a few with magnetic resonance imaging. Improvement in presenting symptoms has been assessed in terms of improvement in their performance status by using the ECOG scale. Results: Fifty-four patients completed the planned treatment. Eight patients received concurrent Temozolamide; 88% of patients had symptom relief at one month follow-up; 39/54 patients had a follow-up of just one to three months. Hence survival could not be assessed in this study. Conclusion: External beam radiotherapy in the dose of 30 Gy over two weeks achieved good palliation in terms improvement in their performance status in 88% of patients. Addition of concurrent and adjuvant Timozolamide may improve the results.

  1. Age Disparity in Palliative Radiation Therapy Among Patients With Advanced Cancer

    Energy Technology Data Exchange (ETDEWEB)

    Wong, Jonathan [University of Hawaii, John A. Burns School of Medicine, Honolulu, Hawaii (United States); Xu, Beibei [Department of Radiation Medicine and Applied Sciences, University of California San Diego, La Jolla, California (United States); Moores Cancer Center, University of California San Diego, La Jolla, California (United States); Yeung, Heidi N.; Roeland, Eric J. [Moores Cancer Center, University of California San Diego, La Jolla, California (United States); Division of Palliative Medicine, Department of Internal Medicine, University of California San Diego, La Jolla, California (United States); Martinez, Maria Elena [Moores Cancer Center, University of California San Diego, La Jolla, California (United States); Department of Family and Preventive Medicine, University of California San Diego, La Jolla, California (United States); Le, Quynh-Thu [Department of Radiation Oncology, Stanford University, Stanford, California (United States); Mell, Loren K. [Department of Radiation Medicine and Applied Sciences, University of California San Diego, La Jolla, California (United States); Moores Cancer Center, University of California San Diego, La Jolla, California (United States); Murphy, James D., E-mail: j2murphy@ucsd.edu [Department of Radiation Medicine and Applied Sciences, University of California San Diego, La Jolla, California (United States); Moores Cancer Center, University of California San Diego, La Jolla, California (United States)

    2014-09-01

    Purpose/Objective: Palliative radiation therapy represents an important treatment option among patients with advanced cancer, although research shows decreased use among older patients. This study evaluated age-related patterns of palliative radiation use among an elderly Medicare population. Methods and Materials: We identified 63,221 patients with metastatic lung, breast, prostate, or colorectal cancer diagnosed between 2000 and 2007 from the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database. Receipt of palliative radiation therapy was extracted from Medicare claims. Multivariate Poisson regression analysis determined residual age-related disparity in the receipt of palliative radiation therapy after controlling for confounding covariates including age-related differences in patient and demographic covariates, length of life, and patient preferences for aggressive cancer therapy. Results: The use of radiation decreased steadily with increasing patient age. Forty-two percent of patients aged 66 to 69 received palliative radiation therapy. Rates of palliative radiation decreased to 38%, 32%, 24%, and 14% among patients aged 70 to 74, 75 to 79, 80 to 84, and over 85, respectively. Multivariate analysis found that confounding covariates attenuated these findings, although the decreased relative rate of palliative radiation therapy among the elderly remained clinically and statistically significant. On multivariate analysis, compared to patients 66 to 69 years old, those aged 70 to 74, 75 to 79, 80 to 84, and over 85 had a 7%, 15%, 25%, and 44% decreased rate of receiving palliative radiation, respectively (all P<.0001). Conclusions: Age disparity with palliative radiation therapy exists among older cancer patients. Further research should strive to identify barriers to palliative radiation among the elderly, and extra effort should be made to give older patients the opportunity to receive this quality of life-enhancing treatment at the end

  2. Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks.

    Science.gov (United States)

    Trachsel, Manuel; Irwin, Scott A; Biller-Andorno, Nikola; Hoff, Paul; Riese, Florian

    2016-07-22

    As a significant proportion of patients receiving palliative care suffer from states of anxiety, depression, delirium, or other mental symptoms, psychiatry and palliative care already collaborate closely in the palliative care of medical conditions. Despite this well-established involvement of psychiatrists in palliative care, psychiatry does not currently explicitly provide palliative care for patients with mental illness outside the context of terminal medical illness. Based on the WHO definition of palliative care, a, a working definition of palliative psychiatry is proposed. Palliative psychiatry focuses on mental health rather than medical/physical issues. We propose that the beneficiaries of palliative psychiatry are patients with severe persistent mental illness, who are at risk of therapeutic neglect and/or overly aggressive care within current paradigms. These include long-term residential care patients with severe chronic schizophrenia and insufficient quality of life, those with therapy-refractory depressions and repeated suicide attempts, and those with severe long-standing therapy-refractory anorexia nervosa. An explicitly palliative approach within psychiatry has the potential to improve quality of care, person-centredness, outcomes, and autonomy for patients with severe persistent mental illness. The first step towards a palliative psychiatry is to acknowledge those palliative approaches that already exist implicitly in psychiatry. Basic skills for a palliative psychiatry include communication of diagnosis and prognosis, symptom assessment and management, support for advance (mental health) care planning, assessment of caregiver needs, and referral to specialized services. Some of these may already be considered core skills of psychiatrists, but for a truly palliative approach they should be exercised guided by an awareness of the limited functional prognosis and lifespan of patients with severe persistent mental illness.

  3. Psychosocial interventions for fatigue during cancer treatment with palliative intent

    NARCIS (Netherlands)

    Poort, Hanneke; Peters, Marlies; Bleijenberg, Gijs; Gielissen, Marieke Fm; Goedendorp, Martine Margaretha; Jacobsen, Paul; Verhagen, Stans; Knoop, Hans

    2017-01-01

    Background: Fatigue is a prevalent and burdensome symptom for patients with incurable cancer receiving cancer treatment with palliative intent and is associated with reduced quality of life. Psychosocial interventions seem promising for management of fatigue among cancer patients. Objectives: To

  4. Psychosocial interventions for fatigue during cancer treatment with palliative intent

    NARCIS (Netherlands)

    Poort, Hanneke; Peters, Marlies; Bleijenberg, Gijs; Gielissen, Marieke F. M.; Goedendorp, Martine Margaretha; Jacobsen, Paul; Verhagen, Stans; Knoop, Hans

    2017-01-01

    Fatigue is a prevalent and burdensome symptom for patients with incurable cancer receiving cancer treatment with palliative intent and is associated with reduced quality of life. Psychosocial interventions seem promising for management of fatigue among cancer patients. To assess the effects of

  5. Issues in Rural Palliative Care: Views from the Countryside

    Science.gov (United States)

    Robinson, Carole A.; Pesut, Barbara; Bottorff, Joan L.

    2010-01-01

    Context: Growing concern exists among health professionals over the dilemma of providing necessary health care for Canada's aging population. Hospice palliative services are an essential need in both urban and rural settings. Rural communities, in particular, are vulnerable to receiving inadequate services due to their geographic isolation.…

  6. My experience with the Tiyanjane and Umodzi palliative care teams ...

    African Journals Online (AJOL)

    After receiving a number of lectures on palliative care during the early part of medical school, my impression was that we were learning these principles to apply them in the contexts of end-of-life care and pain management, for example, when we become doctors of whatever specialty in the future. It was not until third year ...

  7. Total Cavopulmonary Connection is Superior to Atriopulmonary Connection Fontan in Preventing Thrombus Formation: Computer Simulation of Flow-Related Blood Coagulation.

    Science.gov (United States)

    Sughimoto, Koichi; Okauchi, Kazuki; Zannino, Diana; Brizard, Christian P; Liang, Fuyou; Sugawara, Michiko; Liu, Hao; Tsubota, Ken-Ichi

    2015-10-01

    The classical Fontan route, namely the atriopulmonary connection (APC), continues to be associated with a risk of thrombus formation in the atrium. A conversion to a total cavopulmonary connection (TCPC) from the APC can ameliorate hemodynamics for the failed Fontan; however, the impact of these surgical operations on thrombus formation remains elusive. This study elucidates the underlying mechanism of thrombus formation in the Fontan route by using a two-dimensional computer hemodynamic simulation based on a simple blood coagulation rule. Hemodynamics in the Fontan route was simulated with Navier-Stokes equations. The blood coagulation and the hemodynamics were combined using a particle method. Three models were created: APC with a square atrium, APC with a round atrium, and TCPC. To examine the effects of the venous blood flow velocity, the velocity at rest and during exercise (0.5 and 1.0 W/kg) was measured. The total area of the thrombi increased over time. The APC square model showed the highest incidence for thrombus formation, followed by the APC round, whereas no thrombus was formed in the TCPC model. Slower blood flow at rest was associated with a higher incidence of thrombus formation. The TCPC was superior to the classical APC in terms of preventing thrombus formation, due to significant blood flow stagnation in the atrium of the APC. Thus, local hemodynamic behavior associated with the complex channel geometry plays a major role in thrombus formation in the Fontan route.

  8. Pediatric Palliative Care at a Glance

    Science.gov (United States)

    ... palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care for children with serious ... health aides • Social workers • Nutritionists • Pharmacists Where is care provided? Palliative care can be provided in a hospital, during ...

  9. Integrating Palliative Care into Primary Care.

    Science.gov (United States)

    Gorman, Rosemary D

    2016-09-01

    Improved quality of life, care consistent with patient goals of care, and decreased health care spending are benefits of palliative care. Palliative care is appropriate for anyone with a serious illness. Advances in technology and pharmaceuticals have resulted in increasing numbers of seriously ill individuals, many with a high symptom burden. The numbers of individuals who could benefit from palliative care far outweighs the number of palliative care specialists. To integrate palliative care into primary care it is essential that resources are available to improve generalist palliative care skills, identify appropriate patients and refer complex patients to specialist palliative care providers. Copyright © 2016 Elsevier Inc. All rights reserved.

  10. Quality measurement of hospice and palliative care with quality indicators of the German National Hospice and Palliative Care Register (NHPR)

    OpenAIRE

    Berger, Judith

    2017-01-01

    Abstract The German National Hospice and Palliative Care Register was implemented in 2011 by the German Association for Palliative Medicine to provide a nationwide description of the quality of hospice and palliative care. Every year, the register joints data of daily palliative care for a period of at least 3 months per year or up to 30 palliative care patients per palliative care service (palliative care units, hospices, palliative care teams and palliative counselling services). The reg...

  11. Palliative Care for Dementia.

    Science.gov (United States)

    Stewart, Jonathan T; Schultz, Susan K

    2018-03-01

    With the growing care needs for the older population at the end of their lives, there has been a substantial increase in attention to the management of the patient with dementia in hospice and palliative care services. This article reviews issues in access to care and the optimal management of the patient with dementia, particularly in the context of neuropsychiatric complexities. Special issues such as delirium, cachexia, behavioral symptoms, and pain management are addressed. Future challenges in research such as the development of better prognostic models are noted as well as the importance of attention to access to care. Published by Elsevier Inc.

  12. Palliative and end of life care for people with dementia.

    Science.gov (United States)

    Harrison Dening, Karen

    2016-02-03

    Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted.

  13. Palliative care in mental health facilities from the perspective of nurses: a mixed-methods study.

    Science.gov (United States)

    Evenblij, K; Widdershoven, G A M; Onwuteaka-Philipsen, B D; de Kam, H; Pasman, H R W

    2016-08-01

    Dutch mental health facilities completed a survey. Nine participated in in-depth interviews. Results Thirty-six percent of nurses had experience with providing palliative care to psychiatric patients with physical co-morbidity in the past 2 years. Of all patients, 63% received physical care before death, 46% psychosocial care and 33% spiritual care. In 91% of all cases, care was provided by multidisciplinary teams. Patient characteristics and little attention to palliative care were barriers for timely and adequate palliative care. Discussion In palliative care for psychiatric patients, there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Yet there are barriers to adequate palliative care provision. Implications for practice Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of psychiatric patients. Since mental health care is increasingly provided ambulatory, palliative care for psychiatric patients outside mental health facilities should be closely monitored. © 2016 John Wiley & Sons Ltd.

  14. Patient Outcomes After Palliative Care Consultation Among Patients Undergoing Therapeutic Hypothermia.

    Science.gov (United States)

    Pinto, Priya; Brown, Tartania; Khilkin, Michael; Chuang, Elizabeth

    2017-01-01

    To compare the clinical outcomes of patients who did and did not receive palliative care consultation among those who experienced out-of-hospital cardiac arrest and underwent therapeutic hypothermia. We identified patients at a single academic medical center who had undergone therapeutic hypothermia after out-of-hospital cardiac arrest between 2009 and 2013. We performed a retrospective chart review for demographic data, hospital and critical care length of stay, and clinical outcomes of care. We reviewed the charts of 62 patients, of which 35 (56%) received a palliative care consultation and 27 (44%) did not. Palliative care consultation occurred an average of 8.3 days after admission. Patients receiving palliative care consultation were more likely to have a do-not-resuscitate (DNR) order placed (odds ratio: 2.3, P palliative care or not (16.7 vs 17.1 days, P = .90). Intensive care length of stay was also similar (11.3 vs 12.6 days, P = .55). Palliative care consultation was underutilized and utilized late in this cohort. Palliative consultation was associated with DNR orders but did not affect measures of utilization such as hospital and intensive care length of stay.

  15. Palliative radiation therapy in the last 30 days of life: A systematic review.

    Science.gov (United States)

    Park, Kyung Ran; Lee, Chang Geol; Tseng, Yolanda D; Liao, Jay J; Reddy, Suresh; Bruera, Eduardo; Yennurajalingam, Sriram

    2017-11-01

    To investigate the utilization of palliative radiation therapy (RT), predictors for the use of RT, and symptom palliation following RT during the last 30 days of life through systemic review of literature. A systematic search of available medical literature databases was performed on patients receiving palliative RT in the last 30 days of life. A total of 18 studies were evaluated. The overall palliative RT utilization rates during the last month of life were in the range of 5-10% among patients who died of cancer and 9-15.3% of patients who received palliative RT. The most commonly used regimen was 30 Gy in 10 fractions (36-90%). Single fraction RT utilization ranged from 0% to 59%. ECOG performance status 3-4 was significantly associated with patients receiving RT in the last 30 days of life and shorter survival. Twenty-six percent of patients who survived less than 1 month were reported to show symptom palliation following RT. Palliative RT was performed in approximately 10% of patients who died of cancer near their end of life, with the most commonly used regimen of 30 Gy in 10 fractions. This study suggests that greater use of shorter or single fraction regimens may be beneficial, especially in patients with poor performance status. Copyright © 2017 Elsevier B.V. All rights reserved.

  16. Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians

    NARCIS (Netherlands)

    Koper, I.; Heide, A.; Janssens, M.J.P.A.; Swart, S.; Perez, R.S.G.M.; Rietjens, J.A.C.

    2014-01-01

    Purpose: Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it

  17. The optimal delivery of palliative care: a national comparison of the outcomes of consultation teams vs inpatient units.

    Science.gov (United States)

    Casarett, David; Johnson, Megan; Smith, Dawn; Richardson, Diane

    2011-04-11

    Growing attention to end-of-life care has led to intensive efforts to provide better palliative care. However, it is not known whether palliative care is best provided by consultative teams or in dedicated units. This nationwide telephone survey was conducted in 77 Veterans Affairs medical centers that offer palliative care consultation services and dedicated palliative care units. One family member per patient who died at a participating Veterans Affairs medical center between July 1, 2008, and December 31, 2009, was invited to participate. The telephone survey included 1 global rating item and 9 core items describing the patient's care in the last month of life. Interviews were completed with family members for 5901 of 9546 patients. Of these, 1873 received usual care, 1549 received a palliative care consultation, and 2479 received care in a palliative care unit. After nonresponse weighting and propensity score adjustment, families of patients who received a palliative care consultation were more likely than those who received usual care to report that the patient's care in the last month of life had been "excellent" (adjusted proportions: 51% vs 46%; odds ratio [OR], 1.25; 95% confidence interval [CI], 1.02-1.55; P = .04). However, families of patients who received care in a palliative care unit were even more likely to report excellent care (adjusted proportions: 63% vs 53%; OR, 1.52; 95% CI, 1.25-1.85; P < .001). Care received in palliative care units may offer more improvements in care than those achieved with palliative care consultations.

  18. Evaluating an organized palliative care approach in patients with severe stroke.

    Science.gov (United States)

    Blacquiere, Dylan P V; Gubitz, Gord J; Dupere, David; McLeod, Deborah; Phillips, Stephen

    2009-11-01

    A recent survey found few guidelines on the provision of palliative care following stroke; none examined the efficacy or results of any such process. The role of the patient's family in decision making and in conflicts with staff has not been evaluated. We sought to formally evaluate the use of locally-developed palliative care guidelines on our Acute Stroke Unit (ASU). We retrospectively examined records of 104 patients who died on our ASU over a two-year period to determine if our existing palliative guidelines were reflected in clinical practice, and to identify conflicts that arose. Data on medical and nursing care, palliative decisions, and medication use were compared to the ASU's existing palliative care guidelines. Family concerns about the palliative process were also reviewed. Of patients admitted to the stroke unit, 104 (16% of total admissions) died. Ninety-four (90.4%) of these were palliated; all received routine nursing and comfort care prior to death. Median time from admission to palliation was 3.6 days; median time from admission to death was 8.5 days. Most had vital signs (98.9%), investigations (100%) and non-palliative medications (95.7%) stopped, and had nasogastric feeding (96.8%) and intravenous fluids (87.2%) withdrawn or never begun. Most were treated with morphine (93.6%) and scopolamine (81.9%). Concerns raised by family members centered around hydration and feeding (45.7%), doubts about palliative care (27.8%) and patient comfort (18.2%). A formal approach to palliation results in timely decisions regarding end of life care with relatively few conflicts. Further work to address the specific concerns of families is needed.

  19. A Home-Based Palliative Care Consult Service for Veterans.

    Science.gov (United States)

    Golden, Adam G; Antoni, Charles; Gammonley, Denise

    2016-11-01

    We describe the development and implementation of a home-based palliative care consult service for Veterans with advanced illness. A retrospective chart review was performed on 73 Veterans who received a home-based palliative care consult. Nearly one-third were 80 years of age or older, and nearly one-third had a palliative diagnosis of cancer. The most common interventions of the consult team included discussion of advance directives, completion of a "do not resuscitate" form, reduction/stoppage of at least 1 medication, explanation of diagnosis, referral to home-based primary care program, referral to hospice, and assessment/support for caregiver stress. The home-based consult service was therefore able to address clinical and psychosocial issues that can demonstrate a direct benefit to Veterans, families, and referring clinicians. © The Author(s) 2015.

  20. Efficiency of searching the grey literature in palliative care.

    Science.gov (United States)

    Cook, A M; Finlay, I G; Edwards, A G; Hood, K; Higginson, I J; Goodwin, D M; Normand, C E; Douglas, H R

    2001-09-01

    A systematic review into palliative care team effectiveness was undertaken which has, inherent in its methodology, grey literature searching. Over 100 letters were written to a systematically chosen range of service providers, commissioners, and experts in combination with requests for information in six UK national cancer/palliative care organization newsletters. In addition, the System for Information on Grey Literature (SIGLE ) database was searched. As a result, 25 document hard copies were received. The documents were, in all but one case (this one study was also highlighted by the SIGLE search), not relevant as they were predominated by annual reports, service descriptions, and needs assessments. In terms of obtaining unpublished studies for possible inclusion in the review, this comprehensive search was unsuccessful and, therefore, it would appear that grey literature searching is not a useful tool in palliative care systematic reviews.

  1. Geriatric renal palliative care.

    Science.gov (United States)

    Swidler, Mark A

    2012-12-01

    Elderly patients with advanced chronic kidney disease or who are on dialysis should be able to live as fully and comfortably as possible. Geriatric patients are most interested in outcomes that will optimize mental and physical function and limit suffering and pain. Nephrologists must help them answer the question: "How will my kidney problem affect the way I live now and in the future?" This means management must move beyond glomerular filtration rate-related targets and incorporate geriatric principles that focus on assessment of function, comorbidities, geriatric syndromes, and quality of life issues. Therapeutic decisions should be individualized and directed by patient goals of care, which must be explored and documented. Accomplishing this requires inclusion of the patient's family-support system in the shared decision-making process. There is no substitute for spending time listening to and understanding the patient and family agenda, providing timely medical and prognostic updates; discussing realistic scenarios to balance expectations; and planting the seeds of change as the quantity and quality of medical events, geriatric syndromes, and comorbidities accumulate. Synergy of the interdisciplinary renal team with geriatric and palliative medicine specialists provides the expertise to achieve these goals. This falls into the domain of geriatric renal palliative or supportive care (1) and is the subject of this practical review.

  2. Gastrostomies in palliative care.

    Science.gov (United States)

    Gonçalves, Ferraz; Mozes, Mónica; Saraiva, Isabel; Ramos, Cristina

    2006-11-01

    In palliative care, gastrostomies are used to provide nutritional support or to decompress the bowel. To evaluate what happened to the patients monitored at our palliative care unit (PCU) who underwent gastrostomy between October 1994 and January 2005, a retrospective audit was made. The charts of 154 patients were reviewed. The most frequent reason why a patient underwent a gastrostomy was dysphagia due to head and neck and/or esophageal cancer. Only one patient underwent a drainage gastrostomy because of intestinal obstruction. Interventional radiology performed 96% of the gastrostomies. Early complications occurred in 53 patients (34%) who underwent the gastrostomy for feeding and the most common was local pain, usually mild. However, there was one death due to peritonitis, probably related with the procedure. Late complications also occurred in 53 patients and major complications occurred in 22 patients, the most common was extrusion. The median survival after the performance of the gastrostomy was 61 days (range 1 to 551 days). Nineteen patients (12%) survived 1 week or less, 28 (18%) between 8 and 30 days, 51 (33%) from 31 to 90 days, 53 (35%) 91 days or more, and one unknown. The patient who underwent a gastrostomy for bowel obstruction survived for only 7 days. One hundred and twenty-five patients (81%) died at the PCU, 26 (17%) at home, and four (3%) at other places.

  3. Nutrition in palliative care.

    Science.gov (United States)

    Acreman, Sue

    2009-10-01

    Nutrition in palliative care and at the end of life should be one of the goals for improving quality of life. It is important to address issues of food and feeding at this time to assist in the management of troublesome symptoms as well as to enhance the remaining life. While this paper focuses upon the nutritional aspects of cancer in palliative care, the sentiments are applicable to other serious chronic illnesses such as advanced cardiac failure, chronic obstructive pulmonary disease and dementia. Cancer and its treatments exert a major impact upon physical and psychological reserves and at the end of life problems with appetite and the ability to eat and drink compound such impact. The aims of nutritional care minimize food-related discomfort and maximize food enjoyment. Identification of any nutritional problems can facilitate the employment of strategies which need to be discussed with the patient and their families and reviewed regularly as conditions change. Ethical questions will be raised concerning the provision of food and fluids to a person nearing the end of their life. Nurses need to acknowledge that food has greater significance than the provision of nutrients.

  4. Nutritional intervention and quality of life in palliative care patients.

    Science.gov (United States)

    Fleming, Mick; Hollins Martin, Caroline J; Martin, Colin R

    Quality of life measures can be used by health professionals to assess effectiveness of nutritional interventions administered to palliative care patients. Stabilizing, maintaining and attempting to increase weight in palliative care patients through the support of oral feeding, and provision of artificial feeding, has been shown to mediate the metabolic and physical wasting effects of the disease process and improve general comfort. A quality of life instrument is a multi-dimensional questionnaire that health professionals can use to measure domains relating to physical, psychological and social aspects of living, and health and disease outcomes. There are three instruments specifically designed to assess quality of life in patients receiving palliative care. These are: The Palliative Care Quality of life Instrument, The Assessment of Quality of Life at the End of Life (AQEL), and The Spitzer Quality of Life Index (SQLI). General use quality of life measures are multifaceted; however, for use with palliative care patients, they have added dimensions of spirituality, existential issues (purpose and meaning of life), family members' perceptions of quality of care, symptom control and family support. Use of quality of life scales provides health professionals and organizations with an ideal measure for planning, targeting and evaluating health interventions.

  5. Barriers to palliative care for advanced dementia: a scoping review.

    Science.gov (United States)

    Erel, Meira; Marcus, Esther-Lee; Dekeyser-Ganz, Freda

    2017-10-01

    People with dementia often fail to receive palliative care, despite increased recognition of their need and eligibility for such care. The aims of this study were to assess the barriers associated with a lack of implementation of palliative care for people with dementia and to explore whether there is a gap in knowledge necessitating further study. We reviewed the English literature published from 2000 to 2016, related to barriers to palliative care for people with dementia. Twenty-two articles met inclusion criteria for the review. Most originated in Europe or North America and were qualitative in nature. Four key themes were identified: administrative/policy issues, education, communication, and staff personal characteristics. Barriers to the delivery of palliative care for people with dementia have been studied for more than a decade, yet at present, there is a lack of consensus in practice. More research is needed related to barriers associated with personal characteristics. Such investigations have the potential to improve and better understand the complex nature of palliative care in this population.

  6. Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting.

    Science.gov (United States)

    Frey, Rosemary; Gott, Merryn; Raphael, Deborah; O'Callaghan, Anne; Robinson, Jackie; Boyd, Michal; Laking, George; Manson, Leigh; Snow, Barry

    2014-12-01

    Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. On average, the clinical staff rated the quality of care provided to people who die in the hospital as 'good' (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  7. Knowledge, attitudes, beliefs and experience of palliative care amongst South African physiotherapists

    Directory of Open Access Journals (Sweden)

    Brenda M. Morrow

    2017-02-01

    Full Text Available Background: Palliative care encompasses holistic management of patients and families facing life-threatening and life-limiting conditions. There is currently little known about South African physiotherapists’ palliative care knowledge, attitudes, beliefs, experience and training needs.Objectives: To describe the amount and adequacy of palliative care training received by South African physiotherapists, and their interest, knowledge, attitudes, beliefs and experiences of palliative care.Methods: This was a cross-sectional descriptive survey study of a convenience sample of physiotherapists, using an adapted Physical Therapy in Palliative Care-Knowledge, Attitudes, Beliefs and Experiences Scale (PTiPC-KABE Scale. Likert scale scores were converted to continuous data for analysis, presented as median (IQR. Seven universities were contacted to determine undergraduate palliative care curriculum content.Results: A total of 303 participants (8.4% response rate completed the questionnaire, and 289 responses were included (5.35% margin of error with 95% CI. Participants had 16 (6–27 years of experience, with 85.5% in private practice. About 66.7% and 79% of participants reported not receiving any training at undergraduate and postgraduate levels, respectively, with more than 80% expressing that training was inadequate at both levels. Universities (n = 4/7; 57.1% reported a maximum 3 hours undergraduate palliative care training. Seventy-nine percent of respondents had clinical experience in providing palliative care; however ‘knowledge’ was the lowest scoring domain (56.3% (43.8%–62.5%. The ‘beliefs’ domain scored highest at 82.6% (69.6%–91.3%.Conclusion: Many South African physiotherapists manage patients requiring palliative care, despite inadequate training and limited knowledge in this field. More under- and postgraduate learning opportunities should be made available for physiotherapists in the area of palliative care.

  8. Community-Based Palliative Care and Advance Care Planning Documentation: Evidence from a Multispecialty Group.

    Science.gov (United States)

    Tai-Seale, Ming; Yang, Yan; Dillon, Ellis; Tapper, Sharon; Lai, Steve; Yu, Peter; Allore, Heather; Ritchie, Christine

    2018-02-01

    With the growing public demand for access to critical health data across care settings, it is essential that advance care planning (ACP) information be included in the electronic health record (EHR) so that multiple clinicians can access it and understand individuals' preferences for end-of-life care. Community-based palliative care programs often incorporate ACP services. This study examined whether a community-based palliative care program is associated with digitally extractable ACP documentation in the EHR. Observational study using propensity score-weighted generalized estimation equations to examine patterns of digitally extractable ACP documentation. Palo Alto Medical Foundation (PAMF), a multispecialty ambulatory healthcare system in northern California. Individuals aged 65 and older with serious illnesses between January 1, 2013, and December 31, 2014 (N = 3,444). Community-based palliative care program in PAMF. Digitally extractable ACP in EHR. We found that only 14% (n = 483) of individuals with serious illnesses had digitally extractable ACP in electronic health records. Of the 6% of individuals receiving palliative care, 65% had ACP, versus 11% of those not receiving palliative care. Study results showed a strong positive association between palliative care and ACP. Only a small percentage of individuals with serious illnesses had ACP documentation in the EHR. Individuals with serious illnesses infrequently used palliative care delivered by board-certified palliative care specialists. Palliative care service use was associated with higher rates of ACP after controlling for organizational and individual characteristics using a propensity score weighting method. Scalable interventions targeted at non-palliative care clinicians for universal access to ACP are needed. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.

  9. Team networking in palliative care

    Directory of Open Access Journals (Sweden)

    Odette Spruyt

    2011-01-01

    Full Text Available "If you want to travel quickly, go alone. But if you want to travel far, you must go together". African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members.

  10. Palliative procedures in lung cancer.

    Science.gov (United States)

    Masuda, Emi; Sista, Akhilesh K; Pua, Bradley B; Madoff, David C

    2013-06-01

    Palliative care aims to optimize comfort and function when cure is not possible. Image-guided interventions for palliative treatment of lung cancer is aimed at local control of advanced disease in the affected lung, adjacent mediastinal structures, or distant metastatic sites. These procedures include endovascular therapy for superior vena cava syndrome, bronchial artery embolization for hemoptysis associated with lung cancer, and ablation of osseous metastasis. Pathophysiology, clinical presentation, indications of these palliative treatments, procedural techniques, complications, and possible future interventions are discussed in this article.

  11. Impact of specialist palliative care on coping with Parkinson's disease: patients and carers.

    Science.gov (United States)

    Badger, Nathan J; Frizelle, Dorothy; Adams, Debi; Johnson, Miriam J

    2018-01-09

    UK guidelines recommend palliative care access for people with Parkinson's disease; however, this remains sporadic, and it is unknown whether specialist palliative care helps patients and carers cope with this distressing condition. This study aimed to explore whether, and how, access to specialist palliative care services affected patients' and carers' coping with Parkinson's disease. Semistructured interviews were conducted, audio-recorded and verbatim transcribed. Data were analysed using interpretative phenomenological analysis. Participants were patients with advanced idiopathic Parkinson's disease (n=3), and carers of people with Parkinson's disease (n=5, however, one diagnosis was reviewed) receiving care from an integrated specialist palliative care and Parkinson's disease service in North East England. Access to specialist palliative care helped participants cope with some aspects of advanced Parkinson's disease. Three superordinate themes were developed:' managing uncertainty', 'impacts on the self' and 'specialist palliative care maintaining a positive outlook'. Specialist palliative care helped patients and carers cope with advanced Parkinson's disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson's disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson's disease. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  12. Hospital-Based Palliative Care with Medicare Claims: Evidence From Colorado.

    Science.gov (United States)

    Kassner, Cordt T; Bhavsar, Nrupen A; Harker, Matthew; Bull, Janet; Taylor, Donald H

    2018-01-01

    The prevalence of hospital-based palliative care has been largely anecdotal as an increasing service being provided and there is a need to understand what trends can be analyzed with Medicare data. To compare 2 methods of identifying hospital-based palliative care in the Medicare population in Colorado. Through Medicare claims data and phone surveys, we ascertained the presence of hospital-based palliative care services, number of patients receiving palliative care, and number of care visits provided during the previous year. Data were collected from every Medicare-certified hospital in Colorado during 2008 and 2013. We measured the presence of hospital-based palliative care teams and their average number of consultations through a phone survey and cross-referenced using a v-code modifier of Medicare claims indicating a palliative care consult visit. The number of hospital-based palliative care consultations increased five-fold from 2008-2013, and Medicare claims under-counted the number of these consultations compared to phone surveys. The systematic measurement of palliative care nationally is a key priority. More evidence is needed from other states to better understand the usefulness of Medicare claims in this effort.

  13. Integration of Palliative Care Advanced Practice Nurses Into Intensive Care Unit Teams.

    Science.gov (United States)

    O'Mahony, Sean; Johnson, Tricia J; Amer, Shawn; McHugh, Marlene E; McHenry, Janet; Fosler, Laura; Kvetan, Vladimir

    2017-05-01

    Referrals to palliative care for patients at the end of life in the intensive care unit (ICU) often happen late in the ICU stay, if at all. The integration of a palliative medicine advanced practice nurse (APN) is one potential strategy for proactively identifying patients who could benefit from this service. To evaluate the association between the integration of palliative medicine APNs into the routine operations of ICUs and hospital costs at 2 different institutions, Montefiore Medical Center (MMC) and Rush University Medical Center. The association between collaborative palliative care consultation service programs and hospital costs per patient was evaluated for the 2 institutions. Hospital costs were compared for patients with and without a referral to palliative care using Mann-Whitney U tests. Hospital nonroom and board costs at the Weiler campus of MMC were significantly lower for patients with palliative care compared with those who did not receive palliative care (Median = US$6643 vs US$12 399, P integration of APNs into a palliative care team for case finding may be a promising strategy, but more work is needed to determine whether reductions in cost are significant.

  14. Review of palliative sedation and its distinction from euthanasia and lethal injection.

    Science.gov (United States)

    Hahn, Michael P

    2012-01-01

    Palliative sedation evolved from within the practice of palliative medicine and has become adopted by other areas of medicine, such as within intensive care practice. Clinician's usually come across this practice for dying patients who are foregoing or having life support terminated. A number of intolerable and intractable symptom burdens can occur during the end of life period that may require the use of palliative sedation. Furthermore, when patients receive palliative sedation, the continued use of hydration and nutrition becomes an issue of consideration and there are contentious bioethical issues involved in using or withholding these life-sustaining provisions. A general understanding of biomedical ethics helps prevent abuse in the practice of palliative sedation. Various sedative drugs can be employed in the provision of palliative sedation that can produce any desired effect, from light sedation to complete unconsciousness. Although there are some similarities in the pharmacotherapy of palliative sedation, euthanasia, physician-assisted suicide, and lethal injection, there is a difference in how the drugs are administered with each practice. There are some published guidelines about how palliative sedation should be practiced, but currently there is not any universally accepted standard of practice.

  15. Palliative care training and research: The development in Europe and the Bologna experience

    Directory of Open Access Journals (Sweden)

    Deborah Bolognesi

    2013-01-01

    Full Text Available Development of palliative care (PC culture spur the need of proper and formal training. Palliative medicine is not fully recognized as an academic medical discipline due to its humanistic influences, and studies show that physicians declare to be not prepared to provide care and pain management to dying patients. Nowadays, despite leading countries in PC being considered more innovative than other countries,such as Italy, facts show that the achievement of acknowledged discipline went through a long process. In Italy,professionals from about 450 PC units and organizations need to receive a proper and homogeneous training. In Italy, palliative medicine official certification is an undergoing process advocated by a few organizations and in Bologna the Academy of the Sciences of Palliative Medicine operates since 2007 with the defined mission of developing PC culture, also within the University. In order to be as much effective in pursuing its mission, the Academy has strengthened several international cooperation programs and today is leader in PC professional training and research in Italy. The recent law and its feasibility is fastening the process of development of Palliative Care Culture in Italy even if training is not properly regulated and official certification for physician is under evaluation. In Europe, the European Association of Palliative Care is stressing the need for training programs in palliative medicine and the outcomes of the dedicated task force on official certification and specialty in Palliative Medicine will remarkably force policy makers and national councils to officially recognize the discipline.

  16. Assessment of a learning intervention in palliative care based on clinical simulations for nursing students.

    Science.gov (United States)

    Sarabia-Cobo, Carmen María; Alconero-Camarero, Ana Rosa; Lavín-Alconero, Lucía; Ibáñez-Rementería, Isabel

    2016-10-01

    Major deficiencies exist in undergraduate nursing education for Palliative Care. Opportunities to care for dying patients are often unavailable to students in traditional clinical settings. Palliative care simulation is an innovative strategy that may help to prepare undergraduate nursing students to provide quality palliative/end of life care. It is valuable to explore the student nurses' beliefs, feelings and satisfaction regarding the impact that simulation clinic applied to palliative care has and how it influenced their overall experience of caring for a dying patient and the patient's family. This study aimed to evaluate a learning intervention in palliative care using a low-fidelity clinical simulation for undergraduate nursing students from a Spanish university, based on the analytics of their expectations and learning objectives. Sixty-eight students participated in this mixed descriptive design study, they participated in a palliative care simulation scenario and completed three questionnaires which assess the knowledge and expectations before the simulation and the subsequent satisfaction with the performance and learning received. The intervention in question met students' learning expectations, singling out social abilities as important tools in palliative care training, and the students were satisfied with the presented case studies. Our results suggest that low-fidelity clinical simulation intervention training in palliative care is an appropriate and low-cost tool for acquiring competitive skills. Learning in the simulation scenarios provides a mechanism for students to improve student communication skills. Copyright © 2016 Elsevier Ltd. All rights reserved.

  17. [Use of music in palliative care].

    Science.gov (United States)

    Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana

    2011-12-01

    Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques

  18. Palliative care content on cancer center websites.

    Science.gov (United States)

    Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory

    2018-03-01

    Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.

  19. Age disparity in palliative radiation therapy among patients with advanced cancer.

    Science.gov (United States)

    Wong, Jonathan; Xu, Beibei; Yeung, Heidi N; Roeland, Eric J; Martinez, Maria Elena; Le, Quynh-Thu; Mell, Loren K; Murphy, James D

    2014-09-01

    Palliative radiation therapy represents an important treatment option among patients with advanced cancer, although research shows decreased use among older patients. This study evaluated age-related patterns of palliative radiation use among an elderly Medicare population. We identified 63,221 patients with metastatic lung, breast, prostate, or colorectal cancer diagnosed between 2000 and 2007 from the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database. Receipt of palliative radiation therapy was extracted from Medicare claims. Multivariate Poisson regression analysis determined residual age-related disparity in the receipt of palliative radiation therapy after controlling for confounding covariates including age-related differences in patient and demographic covariates, length of life, and patient preferences for aggressive cancer therapy. The use of radiation decreased steadily with increasing patient age. Forty-two percent of patients aged 66 to 69 received palliative radiation therapy. Rates of palliative radiation decreased to 38%, 32%, 24%, and 14% among patients aged 70 to 74, 75 to 79, 80 to 84, and over 85, respectively. Multivariate analysis found that confounding covariates attenuated these findings, although the decreased relative rate of palliative radiation therapy among the elderly remained clinically and statistically significant. On multivariate analysis, compared to patients 66 to 69 years old, those aged 70 to 74, 75 to 79, 80 to 84, and over 85 had a 7%, 15%, 25%, and 44% decreased rate of receiving palliative radiation, respectively (all Ppalliative radiation therapy exists among older cancer patients. Further research should strive to identify barriers to palliative radiation among the elderly, and extra effort should be made to give older patients the opportunity to receive this quality of life-enhancing treatment at the end of life. Copyright © 2014 Elsevier Inc. All rights reserved.

  20. Euthanasia in palliative care journals.

    Science.gov (United States)

    Hermsen, Maaike A; ten Have, Henk A M J

    2002-06-01

    With the growth of palliative care services, interest in moral issues also seems to be growing. The controversial issue of euthanasia significantly provokes moral reflection on the care for dying patients. This article presents an analysis of the moral issue of euthanasia as it is discussed by the palliative care community in the professional journals of palliative care. Initially, the analysis will focus on describing the characteristics of the publications about euthanasia and the attitudes expressed in the articles towards this practice. Second, attention will be paid to the description of the uses of the term euthanasia in the various articles and also how frequently such uses occur. Third, the various arguments in support for or against a place for euthanasia in palliative care will be discussed.

  1. [Multiprofessional cooperation in palliative care].

    Science.gov (United States)

    Falckenberg, Maja

    2007-04-01

    "Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts.

  2. What is Pediatric Palliative Care?

    Science.gov (United States)

    ... With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of ...

  3. Aortopulmonary collateral flow is related to pulmonary artery size and affects ventricular dimensions in patients after the fontan procedure.

    Directory of Open Access Journals (Sweden)

    Heiner Latus

    Full Text Available BACKGROUND: Aortopulmonary collaterals (APCs are frequently found in patients with a single-ventricle (SV circulation. However, knowledge about the clinical significance of the systemic-to-pulmonary shunt flow in patients after the modified Fontan procedure and its potential causes is limited. Accordingly, the aim of our study was to detect and quantify APC flow using cardiovascular magnetic resonance (CMR and assess its impact on SV volume and function as well as to evaluate the role of the size of the pulmonary arteries in regard to the development of APCs. METHODS: 60 patients (mean age 13.3 ± 6.8 years after the Fontan procedure without patent tunnel fenestration underwent CMR as part of their routine clinical assessment that included ventricular functional analysis and flow measurements in the inferior vena cava (IVC, superior vena cava (SVC and ascending aorta (Ao. APC flow was quantified using the systemic flow estimator: (Ao - (IVC + SVC. Pulmonary artery index (Nakata index was calculated as RPA + LPA area/body surface area using contrast enhanced MR angiography. The patient cohort was divided into two groups according to the median APC flow: group 1 0.495 l/min/m(2. RESULTS: Group 1 patients had significant smaller SV enddiastolic (71 ± 16 vs 87 ± 25 ml/m(2; p=0.004 and endsystolic volumes (29 ± 11 vs 40 ± 21 ml/m(2; p=0.02 whereas ejection fraction (59 ± 9 vs 56 ± 13%; p=0.38 differed not significantly. Interestingly, pulmonary artery size showed a significant inverse correlation with APC flow (r=-0.50, p=0.002. CONCLUSIONS: Volume load due to APC flow in Fontan patients affected SV dimensions, but did not result in an impairment of SV function. APC flow was related to small pulmonary artery size, suggesting that small pulmonary arteries represent a potential stimulus for the development of APCs.

  4. Management of specific symptom complexes in patients receiving palliative care

    Science.gov (United States)

    Bruera, E; Neumann, C M

    1998-01-01

    During the past 10 years there have been major changes in the management of the most common symptoms of terminal cancer. Opioid agonists remain the mainstay in the management of cancer pain. Slow-release preparations are currently available for several of these agents. The increased use of opioids has led to the recognition of opioid-induced neurotoxic effects and to the development of effective adjuvant drugs and other strategies to counteract these side effects. A number of drugs are available for the management of symptoms of cachexia, including corticosteroids and progestational drugs. Prokinetic drugs, either alone or in combination with other agents such as corticosteroids, are highly effective in the treatment of chronic nausea. For patients with asthenia, it should first be determined whether there are any reversible causes; if not, corticosteroids and psychostimulants may diminish the symptoms. Haloperidol, other neuroleptics and benzodiazepines may be required to manage hyperactive delirium. Oxygen and opioids are effective in treating dyspnea, whereas there is limited evidence that benzodiazepines provide any relief of this symptom. More research on the assessment and management of these devastating clinical symptoms of cancer is badly needed. PMID:9676549

  5. Palliative care in patients who receive whole brain radiotherapy for ...

    African Journals Online (AJOL)

    Background: Brain Metastases is a devastating complication of Cancer affecting 10-50% of patients with systemic disease. It by far outnumbers primary Brain tumor in a 10:1 ratio. Aims and Objective: To determine the age distribution, gender distribution, tumor of origin, commonest radiotherapy regimen and median survival ...

  6. Walking the line. Palliative sedation for existential distress: still a controversial issue?

    Science.gov (United States)

    Schur, Sophie; Radbruch, Lukas; Masel, Eva K; Weixler, Dietmar; Watzke, Herbert H

    2015-12-01

    Adequate symptom relief is a central aspect of medical care of all patients especially in those with an incurable disease. However, as an illness progresses and the end of life approaches, physical or psychoexistential symptoms may remain uncontrollable requiring palliative sedation. Although palliative sedation has become an increasingly implemented practice in the care of terminally ill patients, sedation in the management of refractory psychological symptoms and existential distress is still a controversial issue and much debated. This case report presents a patient who received palliative sedation for the treatment of existential distress and discusses considerations that may arise from such a therapeutic approach.

  7. Evaluating the impact of palliative or hospice care provided in nursing homes.

    Science.gov (United States)

    Cimino, Nina M; McPherson, Mary Lynn

    2014-10-01

    Palliative and hospice care are increasingly being provided in nursing home settings. The current article reviews the existing evidence relevant to nursing homes to provide practitioners with a greater understanding of the impact of palliative and hospice care on clinical care outcomes (e.g., pain, symptom management), processes of care outcomes (e.g., hospitalizations, cost of care), and family member or health care proxy perceptions of care. Overall, the provision of hospice or palliative care in nursing facilities can improve the clinical care residents receive, reduce hospitalizations, and improve family members' perception of care. Copyright 2014, SLACK Incorporated.

  8. Primary palliative care in neonatal intensive care.

    Science.gov (United States)

    Marc-Aurele, Krishelle L; English, Nancy K

    2017-03-01

    This article explores the 2014 Institute of Medicine׳s recommendation concerning primary palliative care as integral to all neonates and their families in the intensive care setting. We review trends in neonatology and barriers to implementing palliative care in intensive care settings. Neonatal primary palliative care education should address the unique needs of neonates and their families. The neonatal intensive care unit needs a mixed model of palliative care, where the neonatal team provides primary palliative care and the palliative subspecialist consults for more complex or refractory situations that exceed the primary team׳s skills or available time. Copyright © 2017 Elsevier Inc. All rights reserved.

  9. Caval blood flow distribution in patients with Fontan circulation: quantification by using particle traces from 4D flow MR imaging.

    Science.gov (United States)

    Bächler, Pablo; Valverde, Israel; Pinochet, Natalia; Nordmeyer, Sarah; Kuehne, Titus; Crelier, Gérard; Tejos, Cristián; Irarrazaval, Pablo; Beerbaum, Philipp; Uribe, Sergio

    2013-04-01

    To validate the use of particle traces derived from four-dimensional (4D) flow magnetic resonance (MR) imaging to quantify in vivo the caval flow contribution to the pulmonary arteries (PAs) in patients who had been treated with the Fontan procedure. The institutional review boards approved this study, and informed consent was obtained. Twelve healthy volunteers and 10 patients with Fontan circulation were evaluated. The particle trace method consists of creating a region of interest (ROI) on a blood vessel, which is used to emit particles with a temporal resolution of approximately 40 msec. The flow distribution, as a percentage, is then estimated by counting the particles arriving to different ROIs. To validate this method, two independent observers used particle traces to calculate the flow contribution of the PA to its branches in volunteers and compared it with the contribution estimated by measuring net forward flow volume (reference method). After the method was validated, caval flow contributions were quantified in patients. Statistical analysis was performed with nonparametric tests and Bland-Altman plots. P < .05 was considered to indicate a significant difference. Estimation of flow contributions by using particle traces was equivalent to estimation by using the reference method. Mean flow contribution of the PA to the right PA in volunteers was 54% ± 3 (standard deviation) with the reference method versus 54% ± 3 with the particle trace method for observer 1 (P = .4) and 54% ± 4 versus 54% ± 4 for observer 2 (P = .6). In patients with Fontan circulation, 87% ± 13 of the superior vena cava blood flowed to the right PA (range, 63%-100%), whereas 55% ± 19 of the inferior vena cava blood flowed to the left PA (range, 22%-82%). Particle traces derived from 4D flow MR imaging enable in vivo quantification of the caval flow distribution to the PAs in patients with Fontan circulation. This method might allow the identification of patients at risk of

  10. Measuring patients' experiences with palliative care: the Consumer Quality Index Palliative Care.

    Science.gov (United States)

    Claessen, Susanne J J; Francke, Anneke L; Sixma, Herman J; de Veer, Anke J E; Deliens, Luc

    2012-12-01

    The Consumer Quality Index Palliative Care (CQ-index PC) is a structured questionnaire for measuring the quality of palliative care from the perspective of care users. CQ-indices assess which care aspects need quality improvement by relating answers about actual care experiences to answers about the importance of certain aspects of care. To improve the chance that the new instrument has good content validity, a literature study and individual and group discussions were performed, and a steering committee was consulted to establish the instrument's face and content validity. The questionnaire was administered to patients with a life expectancy of 6 months or less and/or who were receiving palliative treatment. Descriptive analyses were carried out on the items about actual care experiences and the importance of care aspects, and on 'need for improvement' scores. 15 care organisations participated. 133 patients met the inclusion criteria (net response n=85). Patients considered the following aspects the most important: 'offering help in good time in acute situations', 'caregivers having the necessary expertise' and 'caregivers taking the patient seriously'. The three care aspects with the highest 'need for improvement' scores were: 'support when the patient feels depressed', 'support when the patient is anxious' and 'support when the patient has shortness of breath'. The CQ-index PC provides opportunities for care organisations to assess which care aspects have the highest priority for quality improvement within their organisation. Further research is needed to assess whether the instrument has enough discriminative power to assess differences between organisations.

  11. Outcomes and palliative care utilization in patients with dementia and acute abdominal emergency: opportunities for surgical quality improvement.

    Science.gov (United States)

    Berlin, Ana; Hwang, Franchesca; Singh, Ranbir; Pentakota, Sri Ram; Singh, Roshansa; Chernock, Brad; Mosenthal, Anne C

    2018-02-01

    When patients with dementia develop acute surgical abdomen, patients, surrogates, and surgeons need accurate prognostic information to facilitate goal-concordant decision making. Palliative care can assist with communication, symptom management, and family and caregiver support in this population. We aimed to characterize outcomes and patterns of palliative care utilization among patients with dementia, presenting with abdominal surgical emergency. We retrospectively queried the National Inpatient Sample for patients aged >50 years with dementia and acute abdominal emergency who were admitted nonelectively 2009-2013, utilizing ICD-9-CM codes for dementia and surgical indication. We characterized outcomes and identified predictors of palliative care utilization. Among 15,209 patients, in-hospital mortality was 10.2%, the nonroutine discharge rate was 67.2%, and 7.5% received palliative care. Patients treated operatively were less likely to receive palliative care than those who did not undergo operation (adjusted OR = 0.50; 95% CI 0.41-0.62). Only 6.4% of patients discharged nonroutinely received palliative care. Patients with dementia and acute abdominal emergency have considerable in-hospital mortality, a high frequency of nonroutine discharge, and low palliative care utilization. In this group, we discovered a large gap in palliative care utilization, particularly among those treated operatively and those who are discharged nonroutinely. Copyright © 2017 Elsevier Inc. All rights reserved.

  12. Palliative nephrectomy until targeted therapy of disseminated kidney cancer patients

    Directory of Open Access Journals (Sweden)

    A. V. Klimov

    2015-01-01

    Full Text Available Objective: to assess the role of palliative nephrectomy in disseminated kidney cancer patients planned to undergo targeted antiangiogenic treatment.Subjects and methods. The investigation included data on 83 patients with T1-4N0 / +M1 disseminated renal cell carcinoma (RCC who had received at least 2 targeted therapy cycles in 2009 to 2011. In 48 (57.8 % patients, the treatment was preceded by palliative nephrectomy that was not carried out in 35 (42.2 %. Before starting targeted therapy, all the cases were confirmed to be diagnosed with clear cell RCC, with a sarcomatoid component being in 7 (8.4 % patients. The median follow-up of all the patients was 21 (12–36 months.Results. The unremoved affected kidney in disseminated kidney cancer patients receiving targeted antiangiogenic therapy is an independent factor for the poor prognosis of progression-free (odds ratio (OR, 2.4; 95 % confidence interval (CI, 1.2–4.7 and overall (OR, 2.8; 95 % CI, 1.3–6.3 survival. Palliative nephrectomy does not improve the prognosis in patients with a low somatic status, the N+ category, and metastases into the bones and nonregional lymph nodes.Conclusion. Palliative nephrectomy in the selected patients with disseminated kidney cancer on targeted antiangiogenic therapy increases progression-free and overall survival.

  13. Adding items that assess changes in activities of daily living does not improve the predictive accuracy of the Palliative Prognostic Index.

    Science.gov (United States)

    Hamano, Jun; Tokuda, Yasuharu; Kawagoe, Shohei; Shinjo, Takuya; Shirayama, Hiroto; Ozawa, Taketoshi; Shishido, Hideki; Otomo, Sen; Nagayama, Jun; Baba, Mika; Tei, Yo; Hiramoto, Shuji; Suga, Akihiko; Hisanaga, Takayuki; Ishihara, Tatsuhiko; Iwashita, Tomoyuki; Kaneishi, Keisuke; Kuriyama, Toshiyuki; Maeda, Takashi; Morita, Tatsuya

    2017-03-01

    Changes in activities of daily living in cancer patients may predict their survival. The Palliative Prognostic Index is a useful tool to evaluate cancer patients, and adding an item about activities of daily living changes might improve its predictive value. To clarify whether adding an item about activities of daily living changes improves the accuracy of Palliative Prognostic Index. Multicenter prospective cohort study. A total of 58 palliative care services in Japan. Patients aged >20 years diagnosed with locally extensive or metastatic cancer (including hematological neoplasms) who had been admitted to palliative care units, were receiving care by hospital-based palliative care teams, or were receiving home-based palliative care. Palliative care physicians recorded clinical variables at the first assessment and followed up patients 6 months later. A total of 2425 subjects were recruited and 2343 of these had analyzable data. The C-statistic of the original Palliative Prognostic Index was 0.801, and those of modified Palliative Prognostic Indices ranged from 0.793 to 0.805 at 3 weeks. For 6-week survival predictions, the C-statistic of the original Palliative Prognostic Index was 0.802, and those of modified Palliative Prognostic Indices ranged from 0.791 to 0.799. The weighted kappa of the original Palliative Prognostic Index was 0.510, and those of modified Palliative Prognostic Indices ranged from 0.484 to 0.508. Adding items about activities of daily living changes to the Palliative Prognostic Index did not improve prognostic value in advanced cancer patients.

  14. Use of dependency and prioritization tools by clinical nurse specialists in palliative care: an exploratory study.

    LENUS (Irish Health Repository)

    Bracken, Mairéad

    2011-12-01

    The principal aim was to assess the utility of three needs assessment\\/dependency tools for use in community-based palliative care services. Specific objectives were to assess a sample of patients receiving specialist palliative care community nursing using these tools, to assess the predictive ability of each tool, and to explore the utility of prioritizing and measuring patient dependency from a clinical nurse specialist (CNS) perspective.

  15. Does the EQ-5D capture the concerns measured by the Palliative care Outcome Scale? Mapping the Palliative care Outcome Scale onto the EQ-5D using statistical methods.

    Science.gov (United States)

    Dzingina, Mendwas D; McCrone, Paul; Higginson, Irene J

    2017-09-01

    The main measure to generate utility data for economic evaluations is the EQ-5D, but no study has tested whether or how to map from palliative care measures to the EQ-5D. To assess the level of conceptual overlap between palliative outcomes and the EQ-5D, and the feasibility of mapping between them to obtain utilities for the Palliative care Outcome Scale. A cross-sectional secondary analysis of data from three studies. Patients receiving palliative care and bereaved relatives, recruited from three tertiary National Health Service hospitals in South London. The overlap between both measures was assessed using principal component analysis. The Palliative care Outcome Scale was mapped onto the EQ-5D using three regression models. Spearman's correlations between both instruments were low (mean rho = 0.11). The principal component analysis showed the Palliative care Outcome Scale is associated with only two EQ-5D dimensions (pain; and anxiety/depression). No Palliative care Outcome Scale items loaded onto the mobility, self-care and usual activities dimensions of the EQ-5D. The mapping models performed poorly at predicting utilities from Palliative care Outcome Scale data (mean absolute error >0.3 and R 2 Palliative care Outcome Scale responses. Differences between the Palliative care Outcome Scale and the EQ-5D do not undermine the qualities of either instrument when used for their own purposes. However, due to conceptual differences, the EQ-5D does not capture some of the concerns measured by the Palliative care Outcome Scale, and therefore, mapping onto the EQ-5D is unlikely to provide an appropriate basis for estimating utilities for conducting economic evaluations in palliative care studies.

  16. Improving primary palliative care in Scotland: lessons from a mixed methods study.

    Science.gov (United States)

    Mason, Bruce; Buckingham, Susan; Finucane, Anne; Hutchison, Peter; Kendall, Marilyn; McCutcheon, Hazel; Porteous, Lorna; Murray, Scott A

    2015-12-10

    Since 2012, all GP practices across Scotland have been supported to take a systematic approach to end-of-life care, by helping them to identify more patients for palliative care through a Palliative Care Directed Enhanced Service (DES). We aimed to understand the impact of this initiative. Routine quantitative data from the 2012/13, and 2013/14 DES were collected from regional health boards, analysed and discussed. Qualitative data were collected from a sample of 2012/13 DES returns and analysed using Thematic Analysis. Data were received from 512 practices in nine Scottish Health boards for the 2012-13 DES and 638 practices in 11 Health boards for 2013-14. A sample of 90 of the returns for 2012-13 was selected for qualitative analysis. In 2012-13, 72 % of patients who died of cancer were listed on the palliative care register (PCR) before death while 27 % of patients who died as a result of non-malignant conditions were listed on the PCR. In 2013-14, cancer identification remained the same but identification of people dying with other long-term conditions had improved to 32.5 %. We identified several key issues needed to improve palliative care in the community. The need for training to identify patients with palliative care needs (particularly non-cancer); communication skills training; improvements in sharing information across the NHS; under-resource of and lack of coordination with district nurses; improvements in information technology; and tools for working with enlarged palliative care registers. The DES helped more patients with long-term conditions (LTC) receive generalist palliative care. Approaching generalist palliative care as anticipatory care could facilitate communication between GPs and patients/families and remove some barriers to early identification of palliative care needs. Improvement of information technology and use of identification tools like the SPICT™ may improve professionals' communication with each other and help may make

  17. Barriers and facilitators to palliative care of patients with chronic heart failure in Germany: a study protocol

    Directory of Open Access Journals (Sweden)

    Stefan Köberich

    2015-07-01

    Full Text Available Background. Despite its high prevalence, similar symptoms and symptom burden, people suffering from chronic heart failure receive less palliative care than patients with malignant diseases. Internationally, numerous barriers to palliative care of patients with chronic heart failure are known, however, there are no credible data regarding barriers and facilitators to palliative care of people suffering from chronic heart failure available for Germany. Design and Methods. Tripartite study. First part of this study evaluates health care providers’ (physicians and nurses perceived barriers and facilitators to palliative care of patients with chronic heart failure using a qualitative approach. At least 18 persons will be interviewed. In the second part, based on the results of part one, a questionnaire about barriers and facilitators to palliative care of patients with chronic heart failure will be designed and applied to at least 150 physicians and nurses. In the last part a classic Delphi method will be used to develop specific measures to improve the palliative care for chronic heart failure patients. Expected Impact for Public Health. The results of this study will help to understand why patients with heart failure are seldom referred to palliative care and will provide solutions to overcome these barriers. Developed solutions will be the first step to improve palliative care in patients with heart failure in Germany. In addition, the results will help health care providers in other countries to take action to improve palliative care situations for heart failure patients.

  18. Fluid-structure interaction simulations of the Fontan procedure using variable wall properties.

    Science.gov (United States)

    Long, C C; Hsu, M-C; Bazilevs, Y; Feinstein, J A; Marsden, A L

    2012-05-01

    Children born with single ventricle heart defects typically undergo a staged surgical procedure culminating in a total cavopulmonary connection (TCPC) or Fontan surgery. The goal of this work was to perform physiologic, patient-specific hemodynamic simulations of two post-operative TCPC patients by using fluid-structure interaction (FSI) simulations. Data from two patients are presented, and post-op anatomy is reconstructed from MRI data. Respiration rate, heart rate, and venous pressures are obtained from catheterization data, and inflow rates are obtained from phase contrast MRI data and are used together with a respiratory model. Lumped parameter (Windkessel) boundary conditions are used at the outlets. We perform FSI simulations by using an arbitrary Lagrangian-Eulerian finite element framework to account for motion of the blood vessel walls in the TCPC. This study is the first to introduce variable elastic properties for the different areas of the TCPC, including a Gore-Tex conduit. Quantities such as wall shear stresses and pressures at critical locations are extracted from the simulation and are compared with pressure tracings from clinical data as well as with rigid wall simulations. Hepatic flow distribution and energy efficiency are also calculated and compared for all cases. There is little effect of FSI on pressure tracings, hepatic flow distribution, and time-averaged energy efficiency. However, the effect of FSI on wall shear stress, instantaneous energy efficiency, and wall motion is significant and should be considered in future work, particularly for accurate prediction of thrombus formation. Copyright © 2012 John Wiley & Sons, Ltd.

  19. Haemodynamic impact of stent implantation for lateral tunnel Fontan stenosis: a patient-specific computational assessment.

    Science.gov (United States)

    Tang, Elaine; McElhinney, Doff B; Restrepo, Maria; Valente, Anne M; Yoganathan, Ajit P

    2016-01-01

    The physiological importance of the lateral tunnel stenosis in the Fontan pathway for children with single ventricle physiology can be difficult to determine. The impact of the stenosis and stent implantation on total cavopulmonary connection resistance has not been characterized, and there are no clear guidelines for intervention. Methods and results A computational framework for haemodynamic assessment of stent implantation in patients with lateral tunnel stenosis was developed. Cardiac magnetic resonances images were reconstructed to obtain total cavopulmonary connection anatomies before stent implantation. Stents with 2-mm diameter increments were virtually implanted in each patient to understand the impact of stent diameter. Numerical simulations were performed in all geometries with patient-specific flow rates. Exercise conditions were simulated by doubling and tripling the lateral tunnel flow rate. The resulting total cavopulmonary connection vascular resistances were computed. A total of six patients (age: 14.4 ± 3.1 years) with lateral tunnel stenosis were included for preliminary analysis. The mean baseline resistance was 1.54 ± 1.08 WU · m(2) and dependent on the stenosis diameter. It was further exacerbated during exercise. It was observed that utilising a stent with a larger diameter lowered the resistance, but the resistance reduction diminished at larger diameters. Using a computational framework to assess the severity of lateral tunnel stenosis and the haemodynamic impact of stent implantation, it was observed that stenosis in the lateral tunnel pathway was associated with higher total cavopulmonary connection resistance than unobstructed pathways, which was exacerbated during exercise. Stent implantation could reduce the resistance, but the improvement was specific to the minimum diameter.

  20. Effect of Fontan geometry on exercise haemodynamics and its potential implications.

    Science.gov (United States)

    Tang, Elaine; Wei, Zhenglun Alan; Whitehead, Kevin K; Khiabani, Reza H; Restrepo, Maria; Mirabella, Lucia; Bethel, James; Paridon, Stephen M; Marino, Bradley S; Fogel, Mark A; Yoganathan, Ajit P

    2017-11-01

    Exercise intolerance afflicts Fontan patients with total cavopulmonary connections (TCPCs) causing a reduction in quality of life. Optimising TCPC design is hypothesised to have a beneficial effect on exercise capacity. This study investigates relationships between TCPC geometries and exercise haemodynamics and performance. This study included 47 patients who completed metabolic exercise stress test with cardiac magnetic resonance (CMR). Phase-contrast CMR images were acquired immediately following supine lower limb exercise. Both anatomies and exercise vessel flow rates at ventilatory anaerobic threshold (VAT) were extracted. The vascular modelling toolkits were used to analyse TCPC geometries. Computational simulations were performed to quantify TCPC indexed power loss (iPL) at VAT. A highly significant inverse correlation was found between the TCPC diameter index, which factors in the narrowing of TCPC vessels, with iPL at VAT (r=-0.723, pexercise performance variables, including minute oxygen consumption (VO2) at VAT (r=0.373, p=0.01), VO2 at peak exercise (r=0.485, p=0.001) and work at VAT/weight (r=0.368, p=0.01). iPL at VAT was negatively correlated with VO2 at VAT (r=-0.337, p=0.02), VO2 at peak exercise (r=-0.394, p=0.007) and work at VAT/weight (r=-0.208, p=0.17). Eliminating vessel narrowing in TCPCs and reducing elevated iPL at VAT could enhance exercise tolerance for patients with TCPCs. These findings could help plan surgical or catheter-based strategies to improve patients' exercise capacity. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  1. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Duration: 5:53. CAPC Palliative 84,554 views 5:53 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 22,405 ...

  2. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before Death 15,777 views 5:27 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: ...

  3. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Try it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from ... patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's ...

  4. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? Cancel Unsubscribe ... The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category ...

  5. Pediatric Palliative Care: A Personal Story

    Science.gov (United States)

    ... Queue __count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  6. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  7. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category ... of Life and palliative care: Thinking about the words we use - Duration: 4:48. Social Care Institute ...

  8. Pediatric Palliative Care: A Personal Story

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  9. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  10. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... views 4:24 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 193,342 views 13:34 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. ...

  11. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 24,448 views 5:39 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: 10:35. Little Stars 12, ...

  12. [Palliative care in Czech Republic in 2016].

    Science.gov (United States)

    Sláma, Ondřej; Kabelka, Ladislav; Loučka, Martin

    In the Czech Republic more than 70,000 patients with chronic incurable diseases need palliative care each year. In 50,000 this need is manageable in the context of general palliative care, 20,000 patients would greatly benefited from specialized palliative care. Most chronically ill patients (> 60 %) died in acute or post acute inpatient health care facilities. Here s the availability and quality of palliative care varies substantially. Inpatient hospices provide end of life palliative care to less than 3000 patients each year. Outpatient and mobile specialized palliative care services are available only to a few hundreds of patients.In the year 2016 palliative care at the appropriate professional level ("state of art") is not a generally available and guaranteed within Czech health care and social system. We perceive an urgent need for the systematic development of general and specialized palliative care at the level of education, healthcare organization and the development of new health and social services.

  13. A National Palliative Care Strategy for Canada

    OpenAIRE

    Morrison, R. Sean

    2017-01-01

    Objective: To identify barrier to achieving universal access to high quality palliative care in Canada, review published national strategies and frameworks to promote palliative care, examine key aspects that have been linked to successful outcomes, and make recommendations for Canada.

  14. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Try it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  15. Physical activity levels in children and adolescents are reduced after the Fontan procedure, independent of exercise capacity, and are associated with lower perceived general health.

    Science.gov (United States)

    McCrindle, Brian W; Williams, Richard V; Mital, Seema; Clark, Bernard J; Russell, Jennifer L; Klein, Gloria; Eisenmann, Joey C

    2007-06-01

    To determine physical activity levels in paediatric patients who underwent the Fontan procedure, and their relationship to functional status and exercise capacity. We studied 147 patients (ages 7-18 years) at a median of 8.1 years after Fontan, as part of the Pediatric Heart Network cross-sectional study of Fontan survivors. Assessment included medical history, self-reported physical activity, parent-completed Child Health Questionnaire (CHQ), cardiopulmonary exercise testing and physical activity level measured by accelerometry (MTI Actigraph). Measured time spent in moderate and vigorous activity was markedly below normal at all ages, particularly in females, and was not significantly related to self-reported activity levels, or to maximum Vo2, Vo2 at anaerobic threshold or maximum work rate on exercise testing. Lower measured activity levels were significantly related to lower perceived general health but not to self-esteem, physical functioning, social impact of physical limitations or overall physical or psychosocial health summary scores. Reduced exercise capacity was more strongly related than measured activity levels to lower scores in general health, self-esteem and physical functioning. Physical activity levels are reduced after Fontan, independent of exercise capacity, and are associated with lower perceived general health but not other aspects of functional status.

  16. Fontan-Associated Liver Disease: Proceedings from the American College of Cardiology Stakeholders Meeting, October 1 to 2, 2015, Washington DC.

    Science.gov (United States)

    Daniels, Curt J; Bradley, Elisa A; Landzberg, Mike J; Aboulhosn, Jamil; Beekman, Robert H; Book, Wendy; Gurvitz, Michelle; John, Anitha; John, Binu; Marelli, Ariane; Marino, Bradley S; Minich, L LuAnn; Poterucha, John J; Rand, Elizabeth B; Veldtman, Gruschen R

    2017-12-26

    Over the past decade, as the majority of patients with single ventricle anatomy who have undergone the Fontan operation reach adulthood, a newly recognized disease process, Fontan-associated liver disease (FALD), has emerged. FALD is an extracardiac complication that may lead to substantial comorbid disease and premature mortality. The risk factors, pathophysiology, longitudinal consequences, and therapeutic options related to FALD remain poorly defined. Although we recognize that Fontan circulatory properties are associated with extracardiac organ dysfunction, numerous gaps in our understanding of the nature of this relationship exist. Such extracardiac manifestations, in addition to other late complications of the circulation, can significantly affect quality of life and healthcare use. Therefore, to initiate a formal evaluation of FALD, the American College of Cardiology (ACC) sponsored a stakeholders meeting on October 1 to 2, 2015, in Washington, DC. The goal of the meeting was to bring together subspecialty experts in the fields of adult and pediatric hepatology, congenital cardiology (adult congenital and pediatric cardiology), heart failure/transplant, epidemiology, and cardiothoracic surgery, as well as patient advocates, patients, parents of children and young adults who have had the Fontan procedure, and research organizations and societies to discuss the current state of FALD. Topics included gaps in knowledge, optimal care, research opportunities and barriers, and sound practices to guide providers, patients, and families. This report summarizes findings from the stakeholders meeting and seeks to establish a platform for understanding and addressing FALD. Copyright © 2017 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

  17. Transhepatic approach to create stent fenestration in the extracardiac Fontan conduit in a child with dextrocardia and interrupted inferior vena cava with azygos continuation.

    Science.gov (United States)

    Kobayashi, Daisuke; Turner, Daniel R; Forbes, Thomas J

    2013-04-01

    Plastic bronchitis is a rare life-threatening complication of Fontan operation. When medical treatment is ineffective in the setting of high systemic venous pressures, Fontan fenestration may be considered to decompress venous pressures and improve cardiac output by creation of the right-to-left shunting. However, transcatheter approach can be difficult in patients with complex venous anatomy. We report a 4-year-old girl born with hypoplastic left ventricle and heterotaxy syndrome, who developed plastic bronchitis following extracardiac Fontan procedure. Her venous anatomy was complex with dextrocardia and interrupted inferior vena cava with azygos continuation. Stent fenestration was successfully performed via transhepatic approach, which was selected based on the anatomical relationship (between extracardiac conduit, left atrium, and hepatic veins) delineated by pre-catheterization cardiac MRI. Simultaneous transesophageal echocardiography guided the intervention. Her plastic bronchitis improved significantly in 3 months but slowly progressed after the stent fenestration. At her 8-month follow-up, stent fenestration remains open and she is currently under heart transplantation evaluation due to persistent plastic bronchitis. Treatment of plastic bronchitis can be undertaken with Fontan fenestration, with pre-procedural MRI playing an essential role in patients with complex venous anatomy. Copyright © 2012 Wiley Periodicals, Inc.

  18. A Pilot Trial of Early Specialty Palliative Care for Patients with Advanced Pancreatic Cancer: Challenges Encountered and Lessons Learned.

    Science.gov (United States)

    Schenker, Yael; Bahary, Nathan; Claxton, Rene; Childers, Julie; Chu, Edward; Kavalieratos, Dio; King, Linda; Lembersky, Barry; Tiver, Greer; Arnold, Robert M

    2018-01-01

    Patients with advanced pancreatic cancer suffer from high morbidity and mortality. Specialty palliative care may improve quality of life. Assess the feasibility, acceptability, and perceived effectiveness of early specialty physician-led palliative care for patients with advanced pancreatic cancer and their caregivers. A mixed-methods pilot randomized controlled trial in which patient-caregiver pairs were randomized (2:1) to receive specialty palliative care, in addition to standard oncology care versus standard oncology care alone. At a National Cancer Institute-designated comprehensive cancer center in Western Pennsylvania, 30 patients with advanced pancreatic adenocarcinoma and their caregivers (N = 30), oncologists (N = 4), and palliative care physicians (N = 3) participated. Feasibility (enrollment, three-month outcome-assessment, and intervention completion rates), acceptability, and perceived effectiveness (process interviews with patients, caregivers, and physicians). Consent:approach rate was 49%, randomized:consent rate 55%, and three-month outcome assessment rate 75%. Two patients and three caregivers withdrew early. The three-month mortality rate was 13%. Patients attended a mean of 1.3 (standard deviation 1.1) palliative care visits during the three-month period. Positive experiences with palliative care included receiving emotional support and symptom management. Negative experiences included inconvenience, long travel times, spending too much time at the cancer center, and no perceived palliative care needs. Physicians suggested embedding palliative care within oncology clinics, tailoring services to patient needs, and facilitating face-to-face communication between oncologists and palliative physicians. A randomized trial of early palliative care for advanced pancreatic cancer did not achieve feasibility goals. Integrating palliative care within oncology clinics may increase acceptability and perceived effectiveness.

  19. Fontan's circulation with dextrocardia, recent pulmonary embolism, and inferior vena cava filter: Anesthetic challenges for urgent hysterectomy.

    Science.gov (United States)

    Singh, Preet Mohinder; Borle, Anuradha; Ramachandran, Rashmi; Trikha, Anjan; Goudra, Basavana Gouda

    2016-01-01

    Fontan's circulation is a unique challenge for the anesthesiologist. Venous pressure is the only source of blood flow for the pulmonary circulation. Patients with such circulation are extremely sensitive to progression of cyanosis (decreased pulmonary blood flow) or circulatory failure. Any major venous compression can compromise the pulmonary blood flow worsening cyanosis; simultaneously, an increased afterload can precipitate circulatory failure. We present a rare patient of surgically corrected Ivemark syndrome with Fontan's physiology with dextrocardia who developed a large uterine fibroid compressing inferior vena cava (IVC). As a result of compression, not only the pulmonary circulation was compromised but she also developed stasis-induced venous thrombosis in the lower limbs that lead to pulmonary embolism (PE) (increased afterload). In addition to oral anticoagulation an IVC filter was inserted to prevent ongoing recurrent PE. Further, to prevent both circulatory compromise and deep venous thrombosis an urgent myomectomy/hysterectomy was planned. In the present case, we discuss the issues involved in the anesthetic management of such patients and highlight the lacunae in the present guidelines for managing perioperative anticoagulation these situations.

  20. Rawlsian Justice and Palliative Care

    DEFF Research Database (Denmark)

    Knight, Carl; Albertsen, Andreas

    2015-01-01

    Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcar...... to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive.......Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare....... We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable...

  1. Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care.

    Science.gov (United States)

    Murray, Scott A; Firth, Adam; Schneider, Nils; Van den Eynden, Bart; Gomez-Batiste, Xavier; Brogaard, Trine; Villanueva, Tiago; Abela, Jurgen; Eychmuller, Steffen; Mitchell, Geoffrey; Downing, Julia; Sallnow, Libby; van Rijswijk, Erik; Barnard, Alan; Lynch, Marie; Fogen, Frederic; Moine, Sébastien

    2015-02-01

    A multidisciplinary European Association of Palliative Care Taskforce was established to scope the extent of and learn what facilitates and hinders the development of palliative care in the community across Europe. To document the barriers and facilitators for palliative care in the community and to produce a resource toolkit that palliative care specialists, primary care health professionals or policymakers, service developers, educationalists and national groups more generally could use to facilitate the development of palliative care in their own country. (1) A survey instrument was sent to general practitioners with knowledge of palliative care services in the community in a diverse sample of European countries. We also conducted an international systematic review of tools used to identify people for palliative care in the community. (2) A draft toolkit was then constructed suggesting how individual countries might best address these issues, and an online survey was then set up for general practitioners and specialists to make comments. Iterations of the toolkit were then presented at international palliative care and primary care conferences. Being unable to identify appropriate patients for palliative care in the community was a major barrier internationally. The systematic review identified tools that might be used to help address this. Various facilitators such as national strategies were identified. A primary palliative care toolkit has been produced and refined, together with associated guidance. Many barriers and facilitators were identified. The primary palliative care toolkit can help community-based palliative care services to be established nationally. © The Author(s) 2014.

  2. Palliative sedation: ethical aspects.

    Science.gov (United States)

    Miccinesi, Guido; Caraceni, Augusto; Maltoni, Marco

    2017-07-12

    Palliative sedation (PS), the medical act of decreasing a patient's awareness to relieve otherwise intractable suffering, is considered by some commentators to be controversial because of its consequences on residual survival and/or quality of life, and to be inappropriate for treating pure existential suffering. We will argue that PS must be always proportional, i.e. controlling refractory symptoms while keeping the loss of personal values (communication, affective relationships, care relationship) as low as possible, and that imminence of death is necessary too, from an ethical point of view, if a deep and continuous sedation (DCS) is proposed. Moreover, in case of pure existential suffering DCS should only be considered after repeated trials of respite sedation. The use of progressive consent and advance care planning to share the decision with the patient and to involve the family in the decision process as much as the patient desires is another ethical aspect to be pursued. Producing, implementing and sustaining guidelines at the higher scientific and professional level promise to help in improving both clinical and ethical aspects of the practice of PS.

  3. Palliative social media.

    Science.gov (United States)

    Taubert, Mark; Watts, Gareth; Boland, Jason; Radbruch, Lukas

    2014-03-01

    The uses of social media have become ubiquitous in contemporary society at an astonishingly fast-paced rate. The internet and in particular platforms such as Facebook, Twitter and YouTube are now part of most people's vocabulary and are starting to replace many face-to-face interactions. The online world, in particular, is alive with discussions, comments and anecdotes about the topics of illness, disease, hospitals, death and dying. The topic of death and dying had in the not too distant past been seen as taboo, but willingness and need to talk openly about it appears to be on the increase. In parallel to this, many public awareness campaigns are highlighting society's need to be more prepared for dying and death. This will have a significant impact on the way terminally ill patients and their families approach the last years, months and weeks of their lives and how they might expect palliative health and social care professionals working with them through these difficult periods to interact with them. We pay particular attention to the areas of digital posterity creation and memorialisation within the wider holistic context of end-of-life care.

  4. Characteristics of palliative care consultation at an academic level one trauma center.

    Science.gov (United States)

    Rivet, Emily B; Ferrada, Paula; Albrecht, Tara; Cassel, J Brian; Broering, Beth; Noreika, Danielle; Del Fabbro, Egidio

    2017-10-01

    The current status of palliative care consultation for trauma patients has not been well characterized. We hypothesized that palliative care consultation currently is requested for patients too late to have any clinical significance. A retrospective chart review was performed for traumatically injured patients' ≥18 years of age who received palliative care consultation at an academic medical center during a one-year period. The palliative care team evaluated 82 patients with a median age of 60 years. Pain and end of life were the most common reasons for consultation; interventions performed included delirium management and discussions about nutritional support. For decedents, median interval from palliative care consultation to death was 1 day. Twenty seven patients died (11 in the palliative care unit, 16 in an ICU). Nine patients were discharged to hospice. Most consultations were performed for pain and end of life management in the last 24 h of life, demonstrating the opportunity to engage the palliative care service earlier in the course of hospitalization. Copyright © 2017. Published by Elsevier Inc.

  5. Factors predicting the effectiveness of palliative care in patients with advanced cancer.

    Science.gov (United States)

    Chaiviboontham, Suchira

    2015-08-01

    The purpose of this study was to assess the factors that predict the effectiveness of palliative care in patients with advanced cancer. Cross-sectional data were collected from 240 patients recruited from three tertiary care hospitals in Bangkok and suburban Thailand aged 18 years or older who were willing to participate; able to speak, read, and write Thai; were not receiving aggressive cancer treatment; and had been diagnosed with advanced-stage cancer. Participants were asked to complete a Personal Information Questionnaire (PIQ), a Palliative Care Assessment Form (PCAF), and the Spiritual Well-Being Scale (SWBS). The significant predictors of the effectiveness of palliative care in patients with advanced cancer were found to be spiritual well-being (p = 0.000) and palliative care strategies: a combination of pharmacological and psychosocial care, mind-body intervention, and spiritual care; physical management; and traditional medicine, herbal treatment, and diet management (p = 0.027). The likelihood of effectiveness for patients whose spiritual well-being and palliative care strategies scores increased by an average of one point increased by factors of 1.058 and 2.271, respectively. These findings suggest that patients who experienced better spiritual well-being and who employed a variety of palliative care strategies also experienced enhanced effectiveness of palliative care.

  6. Comparison of the Educational Needs of Neonatologists and Neonatal Nurses Regarding Palliative Care in Taiwan.

    Science.gov (United States)

    Lee, Min-Chun; Chen, Yong-Chuan; Chen, Chao-Huei; Lu, Frank Leigh; Hsiao, Chien-Chou; Peng, Niang-Huei

    2016-04-01

    Education and training are very critical to development of high-quality neonatal palliative care. However, little investigation has been done into Taiwanese neonatal clinicians' educational needs regarding neonatal palliative care. The purposes of this study were to characterize and identify neonatal clinicians' educational needs regarding neonatal palliative care. A cross-sectional descriptive surveyed method via a self administered questionnaire was used in this research. Thirty neonatologists were recruited by a convenience sampling and 30 nurses were recruited by a randomized sampling. Out of sixty neonatal clinicians' survey, few had received the education in neonatal palliative care. Most reported minimal training in, experience with, and knowledge of neonatal palliative care. For neonatologists, two of twelve most strongly-felt educational needs were "discussing palliative care and ethical decision-making with parents" (70%) and "informing parents the poor progress in neonates" (63.3%). In contrast, neonatal nurses wanted more training regarding pain control (50%). Communication skills, including the discussing poor prognosis, bad news, and code status and talking with neonates about end-of-life care, were the educational need most commonly felt by both neonatologists and nurses. Survey data from neonatologists and neonatal nurses in Taiwan indicate a need for further training on a range of neonatal palliative care competencies. © The Author(s) 2014.

  7. Palliative care for those with heart failure: nurses' knowledge, attitude, and preparedness to practice.

    Science.gov (United States)

    Kim, Sanghee; Hwang, Won Ju

    2014-04-01

    Palliative care is an important element of holistic care but has received little attention in cardiac disease patients. The purpose of the paper is (a) to investigate nurses' knowledge of palliative care, attitudes toward care of the dying, coping with death, and preparedness to practice palliative care for those with heart failure, and (b) to evaluate influencing factors on preparedness to practice on palliative care. A cross-sectional descriptive design employed a structured questionnaire that tested nurses' knowledge, attitude, coping, and preparedness to practice on palliative care for patients with heart failure. Ninety nurses in two tertiary university hospitals in South Korea participated in the survey. Data were analyzed with descriptive statistics, correlation, and multiple regression. Results showed low levels of knowledge reported (an average of 48.3% correct answers), attitude (134.8±110.1), coping (117.2±24.3), and preparedness to practice (17.3±4.7) relating to palliative care. The extent of knowledge was related to both attitudes and coping. These attitudes and coping skills were related to preparedness to practice. The multiple regression analysis showed that preparedness to practice was explained by coping and attitude (R (2) =0.46, F=6.1, pknowledge, attitude, coping, and preparedness to practice. Guidance to assist healthcare professionals involved in palliative care for those with cardiac disease needs to be developed and provided.

  8. Palliative Care Providers' Practices Surrounding Psychological Distress Screening and Treatment: A National Survey.

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    Kozlov, Elissa; Eghan, Claude; Moran, Sheila; Herr, Keela; Reid, M Carrington

    2017-01-01

    To investigate how inpatient palliative care teams nationwide currently screen for and treat psychological distress. A web-based survey was sent to inpatient palliative care providers of all disciplines nationwide asking about their practice patterns regarding psychological assessment and treatment. Descriptive statistics were used to characterize the sample and responses, and analysis of variance was conducted to determine whether certain disciplines were more likely to utilize specific treatment modalities. A total of N = 236 respondents were included in the final analyses. Providers reported that they encounter psychological distress regularly in their practice and that they screen for distress using multiple methods. When psychological distress is detected, providers reported referring patients to an average of 3 different providers (standard deviation = 1.46), most frequently a social worker (69.6%) or chaplain (65.3%) on the palliative care team. A total of 84.6% of physicians and 54.5% of nurse practitioners reported that they prescribe anxiolytics or selective serotonin reuptake inhibitors to patients experiencing psychological distress. This study revealed significant variability and redundancy in how palliative care teams currently manage psychological distress. The lack of consistency potentially stems from the variability in the composition of palliative care teams across care settings and the lack of scientific evidence for best practices in psychological care in palliative care. Future research is needed to establish best practices in the screening and treatment of psychological distress for patients receiving palliative care.

  9. The role of speech-language pathologists in adult palliative care.

    Science.gov (United States)

    Chahda, Laura; Mathisen, Bernice A; Carey, Lindsay B

    2017-02-01

    Given minimal studies describing the role and practice of speech-language pathologists (SLPs) in adult palliative care, the aim of this review was to compile a database of research literature, examine the potential research gaps and to consider material that specifically discussed the need for and/or use of procedures and protocols for SLPs working in palliative care that would support the development of SLP palliative care guidelines. A scoping review was conducted utilising Arksey and O'Malley's framework with the goal of exploring any key concepts and approaches utilised by SLPs in adult palliative care, plus any literature and/or recommendations regarding SLP practice in adult palliative care settings. Over 1200 articles were initially identified. Of the 1200 articles, 13 academic papers were considered relevant as they recommended, or at least suggested, the need for speech-language pathology therapy guidelines to be implemented within adult palliative care settings. The main focus of these articles was on ethical considerations and clinical recommendations for SLPs. Recommendations arising from this scoping review include providing goals to support current practising SLP clinicians and developing clinical guidelines to manage swallowing and/or communication needs of people receiving palliative care.

  10. Can a Home-based Cardiac Physical Activity Program Improve the Physical Function Quality of Life in Children with Fontan Circulation?

    Science.gov (United States)

    Jacobsen, Roni M; Ginde, Salil; Mussatto, Kathleen; Neubauer, Jennifer; Earing, Michael; Danduran, Michael

    2016-01-01

    Patients after Fontan operation for complex congenital heart disease (CHD) have decreased exercise capacity and report reduced health-related quality of life (HRQOL). Studies suggest hospital-based cardiac physical activity programs can improve HRQOL and exercise capacity in patients with CHD; however, these programs have variable adherence rates. The impact of a home-based cardiac physical activity program in Fontan survivors is unclear. This pilot study evaluated the safety, feasibility, and benefits of an innovative home-based physical activity program on HRQOL in Fontan patients. A total of 14 children, 8-12 years, with Fontan circulation enrolled in a 12-week moderate/high intensity home-based cardiac physical activity program, which included a home exercise routine and 3 formalized in-person exercise sessions at 0, 6, and 12 weeks. Subjects and parents completed validated questionnaires to assess HRQOL. The Shuttle Test Run was used to measure exercise capacity. A Fitbit Flex Activity Monitor was used to assess adherence to the home activity program. Of the 14 patients, 57% were male and 36% had a dominant left ventricle. Overall, 93% completed the program. There were no adverse events. Parents reported significant improvement in their child's overall HRQOL (P home-based cardiac physical activity program is safe and feasible in preteen Fontan patients. Parent proxy-reported HRQOL and objective measures of exercise capacity significantly improved. A 6-month follow up session is scheduled to assess sustainability. A larger study is needed to determine the applicability and reproducibility of these findings in other age groups and forms of complex CHD. © 2016 Wiley Periodicals, Inc.

  11. Integration of Early Specialist Palliative Care in Cancer Care and Patient Related Outcomes: A Critical Review of Evidence

    Science.gov (United States)

    Salins, Naveen; Ramanjulu, Raghavendra; Patra, Lipika; Deodhar, Jayita; Muckaden, Mary Ann

    2016-01-01

    Introduction: World Health Organization and American Society of Clinical Oncology recommend early integration of specialist palliative care in patients with cancer. This paper focuses on critical review of evidence on integration of early specialist palliative care in cancer care and patient-related outcomes. Methods: The question for the literature search was – Does integration of early specialist palliative care in cancer care influences patient-related outcomes? 31 articles related to literature search review question were included in this paper. Results: Ten patient-related outcomes of early specialist palliative care in adult cancer care was studied. Studies by Temel et al. (2012), Bakitas et al. (2009), Zimmermann et al. (2014), Rugno et al. (2014), Lowery et al. (2013) and Walker et al. (2014) showed early specialist palliative care improves health-related quality of life (HRQOL). Studies by Pirl et al. (2012), Lowery et al. (2013), and Walker et al. (2014) showed early specialist palliative care improved mood depression and anxiety. Studies by Zimmermann et al. and Rugno et al. (2014) showed symptom control benefit of early specialist palliative care. Studies by Temel (2010), Bakitas (2015) and Rugno et al. (2014) showed survival improvement with early specialist palliative care. All these studies were carried in ambulatory palliative care setting. No survival benefit of palliative care intervention was seen in inpatient palliative care setting. The studies by Geer et al. (2012), Rugno et al. (2014), and Lowery et al. (2013) showed that early palliative care intervention positively influences treatment decision making. All the studies showed that palliative care intervention group received less intravenous chemotherapy in last few weeks of life. Studies by Yoong et al. and Temel et al. (2011) shows early specialist palliative care improves advanced care planning. Studies by Temel et al. (2010), Greer et al. (2012), McNamara et al. (2013), Hui et al. (2014

  12. 'Busyness' and the preclusion of quality palliative district nursing care.

    Science.gov (United States)

    Nagington, Maurice; Luker, Karen; Walshe, Catherine

    2013-12-01

    Ethical care is beginning to be recognised as care that accounts for the views of those at the receiving end of care. However, in the context of palliative and supportive district nursing care, the patients' and their carers' views are seldom heard. This qualitative research study explores these views. Data were collected through semi-structured interviews with 26 patients with palliative and supportive care needs receiving district nursing care, and 13 of their carers. Participants were recruited via community nurses and hospices between September 2010 and October 2011. Post-structural discourse analysis is used to examine how discourses operate on a moral level. One discourse, 'busyness', is argued to preclude a moral form of nursing care. The discourse of friendship is presented to contrast this. Discussion explores Gallagher's 'slow ethics' and challenges the currently accepted ways of measuring to improve quality of care concluding that quality cannot be measured.

  13. Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: A qualitative study of the perspective of professional caregivers.

    Science.gov (United States)

    Mousing, Camilla A; Timm, Helle; Lomborg, Kirsten; Kirkevold, Marit

    2017-07-19

    To examine the experiences with palliative care in people with chronic obstructive pulmonary disease among professional caregivers in a Danish home care setting. Many patients with advanced chronic obstructive pulmonary disease depend on professional caregivers in the primary sector to provide assistance and care. However, chronic obstructive pulmonary disease patients receive no or only very little palliative care compared to patients with cancer although they may have many burdensome symptoms. Qualitative explorative study. In 2013-2014, ten professional caregivers from three districts in a Danish municipality were followed during home visits to patients with chronic obstructive pulmonary disease and individual interviews about palliative care were subsequently conducted. In 2014, 66 professional caregivers, representing eleven home care districts, participated in ten group discussions about palliative care needs in this group of patients. Data were analysed using qualitative descriptive analysis. The study revealed a nonawareness of palliative care for patients with chronic obstructive pulmonary disease among the professional caregivers who expressed vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care, lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care. Nonawareness and organisational barriers led to difficulties in identifying palliative care needs and reluctance to initiate conversations about palliative care. The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may be needed to reduce the barriers to palliative care. The findings uncovered barriers to palliative care that must be addressed. Targeted educational programmes and organisational changes may increase the ability to

  14. Symptom burden in mesothelioma patients admitted to home palliative care.

    Science.gov (United States)

    Mercadante, Sebastiano; Degiovanni, Daniela; Casuccio, Alessandra

    2016-12-01

    Mesothelioma is a very aggressive cancer that is brought on by asbestos exposure. Because there is a long latency period between exposure to asbestos and symptoms of disease, most patients with mesothelioma present with advanced disease and survive an average of 8-12 months. Thus, best supportive care should be considered critical to optimally manage these patients. The aim of this study was to examine the epidemiological characteristics and symptom burden of mesothelioma patients when admitted to home palliative care. The charts of a consecutive sample of patients admitted to the home palliative care program with a diagnosis of mesothelioma in an endemic industrialized area were reviewed. The estimated survival time was about two months from admission. Epidemiological characteristics were collected. Karnofsky status, characteristics of pain and analgesic treatment at time of admission were recorded. ESAS (Edmonton Symptom Assessment System) and other clinical problems reported in the charts at admission time were also recorded. Of the 674 charts reviewed, 56 patients (8.3%) had a diagnosis of mesothelioma. About three quarters of those had pain, with 18 and 2 patients with moderate and severe pain, respectively, despite receiving medium to high doses of opioids. The principal pain site was the chest. Pain was significantly associated with opioid consumption (p palliative care late in the course of their disease, suggesting that earlier integration of palliative care should be considered to relieve suffering in all disease stages - not only at the end of life.

  15. Palliative medicines for children - a new frontier in paediatric research.

    Science.gov (United States)

    Jamieson, Liz; Wong, Ian C K; Craig, Finella; Christiansen, Nanna; Brombley, Karen; Tuleu, Catherine; Harrop, Emily

    2017-04-01

    This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of 'therapeutic orphans'. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo. Most medicines used in children receiving palliative care are old and off-patent drugs, developed for and tested in an adult population. Many are not available in suitable formulations (dosage form and strength) for administration to children, and there are often no age-related profiles of adverse drug reactions or for safe dosing. Existing regional paediatric palliative care networks and support organisations should lobby funding bodies and the academic community to support appropriate research for this group of therapeutic orphans. Support must also be provided to pharmaceutical companies in the development of suitable products with appropriate formulations. © 2016 Royal Pharmaceutical Society.

  16. Attachment theory and spirituality: two threads converging in palliative care?

    Science.gov (United States)

    Loetz, Cécile; Müller, Jakob; Frick, Eckhard; Petersen, Yvonne; Hvidt, Niels Christian; Mauer, Christine

    2013-01-01

    The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.

  17. Attachment Theory and Spirituality: Two Threads Converging in Palliative Care?

    Directory of Open Access Journals (Sweden)

    Cécile Loetz

    2013-01-01

    Full Text Available The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient’s needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person’s attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one’s own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.

  18. Geritalk: Communication Skills Training for Geriatrics and Palliative Medicine Fellows

    Science.gov (United States)

    Kelley, Amy S.; Back, Anthony L.; Arnold, Robert M.; Goldberg, Gabrielle R.; Lim, Betty B.; Litrivis, Evgenia; Smith, Cardinale B.; O’Neill, Lynn B.

    2011-01-01

    Expert communication is essential to high quality care for older patients with serious illness. While the importance of communication skills is widely recognized, formal curricula for teaching communication skills to geriatrics and palliative medicine fellows is often inadequate or unavailable. We drew upon the educational principles and format of an evidence-based, interactive teaching method, to develop an intensive communication skills training course designed specifically to address the common communication challenges faced by geriatrics and palliative medicine fellows. The 2-day retreat, held away from the hospital environment, included large-group overview presentations, small-group communication skills practice, and development of future skills practice commitment. Faculty received in-depth training in small-group facilitation techniques prior to the course. Geriatrics and palliative medicine fellows were recruited to participate in the course and 100% (n=18) enrolled. Overall satisfaction with the course was very high (mean 4.8 on 5-point scale). Compared to before the course, fellows reported an increase in self-assessed preparedness for specific communication challenges (mean increase 1.4 on 5-point scale, pskills practice (mean 4.3 on 5-point scale). In sum, the intensive communication skills program, tailored to the specific needs of geriatrics and palliative medicine fellows, improved fellows’ self-assessed preparedness for challenging communication tasks and provided a model for ongoing deliberate practice of communication skills. PMID:22211768

  19. Early palliative care for patients with metastatic cancer.

    Science.gov (United States)

    Gaertner, Jan; Wolf, J; Voltz, R

    2012-07-01

    At present, clinicians and healthcare providers are increasingly urged to advance the provision of state-of-the-art palliative care for patients with incurable cancer. This review provides an overview about the recent findings and practical suggestions. In the last decade, the awareness about the logistic and personal resources needed to meet the somatic and psychological needs of patients with progressive and life-threatening diseases has increased and in parallel, palliative care concepts and expertise have evolved substantially. Care concepts for patients with metastatic cancer emphasized the potential of interdisciplinary care. For example, in 2010, a randomized trial reported a benefit for patients with lung cancer who received early palliative care in addition to routine care. It is discussed that this was because of increased quality of life and detailed exploration of patient preferences. Patients, families and physicians benefit from shared care concepts of oncology and specialized palliative care. Although this concept is already becoming increasingly implemented in tertiary (comprehensive cancer-) care settings, the potential of this approach should be explored for other clinical settings such as office-based oncology.

  20. Endoscopic Palliation for Pancreatic Cancer

    Directory of Open Access Journals (Sweden)

    Mihir Bakhru

    2011-04-01

    Full Text Available Pancreatic cancer is devastating due to its poor prognosis. Patients require a multidisciplinary approach to guide available options, mostly palliative because of advanced disease at presentation. Palliation including relief of biliary obstruction, gastric outlet obstruction, and cancer-related pain has become the focus in patients whose cancer is determined to be unresectable. Endoscopic stenting for biliary obstruction is an option for drainage to avoid the complications including jaundice, pruritus, infection, liver dysfunction and eventually failure. Enteral stents can relieve gastric obstruction and allow patients to resume oral intake. Pain is difficult to treat in cancer patients and endoscopic procedures such as pancreatic stenting and celiac plexus neurolysis can provide relief. The objective of endoscopic palliation is to primarily address symptoms as well improve quality of life.

  1. Branding Palliative Care Units by Avoiding the Terms "Palliative" and "Hospice".

    Science.gov (United States)

    Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

    2017-01-01

    The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.

  2. Animal-Assisted Therapy in Pediatric Palliative Care.

    Science.gov (United States)

    Gilmer, Mary Jo; Baudino, Marissa N; Tielsch Goddard, Anna; Vickers, Donna C; Akard, Terrah Foster

    2016-09-01

    Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population. Copyright © 2016 Elsevier Inc. All rights reserved.

  3. Interaction of palliative care and primary care.

    Science.gov (United States)

    Ghosh, Amrita; Dzeng, Elizabeth; Cheng, M Jennifer

    2015-05-01

    Primary care physicians are often the first medical providers patients seek out, and are in an excellent position to provide primary palliative care. Primary palliative care encompasses basic skills including basic evaluation and management of symptoms and discussions about goals of care and advance care planning. Specialty palliative care consultation complements primary care by assisting with complex psychosocial-spiritual patient and family situations. This article reviews primary palliative care skill sets and criteria for when to consider referring patients to specialty palliative care and hospice services. Published by Elsevier Inc.

  4. Palliative care in advanced dementia.

    Science.gov (United States)

    Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth

    2014-08-01

    Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. Copyright © 2014 Elsevier Inc. All rights reserved.

  5. Pneumocystis pneumonia in patients treated with long-term steroid therapy for symptom palliation: a neglected infection in palliative care.

    Science.gov (United States)

    Yamaguchi, Takashi; Nagai, Yuki; Morita, Tatsuya; Kiuchi, Daisuke; Matsumoto, Mina; Hisahara, Ko; Hisanaga, Takayuki

    2014-12-01

    We report 3 cases of pneumocystis pneumonia (PCP) in patients with advanced cancer who received palliative care. All patients received long-term steroid therapy for symptom management. A diagnosis of PCP was based on clinical symptoms and a positive Pneumocystis jiroveci polymerase chain reaction test from induced sputum specimens. Despite appropriate treatment, only 1 patient recovered from PCP. Long-term steroid, often prescribed in palliative care settings, is the most common risk factor for PCP in non-HIV patients. Pneumocystis pneumonia may cause distressing symptoms such as severe dyspnea, and the mortality rate is high. Therefore, it is important to consider PCP prophylaxis for high-risk patients and to diagnose PCP early and provide appropriate treatment to alleviate PCP-related symptoms and avert unnecessary shortening of a patient's life expectancy. © The Author(s) 2013.

  6. Multicomponent Palliative Care Interventions in Advanced Chronic Diseases: A Systematic Review.

    Science.gov (United States)

    Phongtankuel, Veerawat; Meador, Lauren; Adelman, Ronald D; Roberts, Jordan; Henderson, Charles R; Mehta, Sonal S; Del Carmen, Tessa; Reid, M C

    2018-01-01

    Many patients live with serious chronic or terminal illnesses. Multicomponent palliative care interventions have been increasingly utilized in patient care; however, it is unclear what is being implemented and who is delivering these interventions. To (1) describe the delivery of multicomponent palliative care interventions, (2) characterize the disciplines delivering care, (3) identify the components being implemented, and (4) analyze whether the number of disciplines or components being implemented are associated with positive outcomes. Systematic review. English-language articles analyzing multicomponent palliative care interventions. Delivery of palliative interventions by discipline, components of palliative care implemented, and number of positive outcomes (eg, pain, quality of life). Our search strategy yielded 71 articles, which detailed 64 unique multicomponent palliative care interventions. Nurses (n = 64, 88%) were most often involved in delivering care, followed by physicians (n = 43, 67%), social workers (n = 33, 52%), and chaplains (n = 19, 30%). The most common palliative care components patients received were symptom management (n = 56, 88%), psychological support/counseling (n = 52, 81%), and disease education (n = 48, 75%). Statistical analysis did not uncover an association between number of disciplines or components and positive outcomes. While there has been growth in multicomponent palliative care interventions over the past 3 decades, important aspects require additional study such as better inclusion of key groups (eg, chronic obstructive pulmonary disease, end-stage renal disease, minorities, older adults); incorporating core components of palliative care (eg, interdisciplinary team, integrating caregivers, providing spiritual support); and developing ways to evaluate the effectiveness of interventions that can be readily replicated and disseminated.

  7. Impact of Oncologists' Attitudes Toward End-of-Life Care on Patients' Access to Palliative Care.

    Science.gov (United States)

    Hui, David; Cerana, Maria Agustina; Park, Minjeong; Hess, Kenneth; Bruera, Eduardo

    2016-09-01

    It is unclear how oncologists' attitudes toward end-of-life (EOL) care affect the delivery of care. The present study examined the association between oncologists' EOL care attitudes and (a) timely specialist palliative care referral, (b) provision of supportive care, and (c) EOL cancer treatment decisions. We randomly surveyed 240 oncology specialists at our tertiary care cancer center to assess their attitudes toward EOL care using a score derived from the Jackson et al. qualitative conceptual framework (0 = uncomfortable and 8 = highly comfortable with EOL care). We determined the association between this score and clinicians' report of specialist palliative care referral, provision of supportive care, and EOL cancer treatment decisions. Of the 182 respondents (response rate of 76%), the median composite EOL care score was 6 (interquartile range, 5-7). A higher EOL score was significantly associated with solid tumor oncology (median 7 vs. 6 for hematologic oncology; p = .003), a greater willingness to refer patients with newly diagnosed cancer to specialist palliative care (median, 7 vs. 6; p = .01), greater comfort with symptom management (median, 6 vs. 5; p = .01), and provision of counseling (median, 7 vs. 4; p palliative care (score 0-4, 27%; 5, 31%; 6, 32%; 7, 35%; and 8, 45%; p = .007). Greater comfort with EOL care was associated with higher rates of specialist palliative care referral and self-reported primary palliative care delivery. More support and education are needed for oncologists who are less comfortable with EOL care. In the present survey of oncology specialists, most reported that they were comfortable with end-of-life (EOL) care, which was in turn, associated with greater provision of primary palliative care and higher rates of referral to specialist palliative care. The results of the present study highlight the need for more support and education for oncologists less comfortable with EOL care because their patients might receive lower

  8. Impact of Oncologists’ Attitudes Toward End-of-Life Care on Patients’ Access to Palliative Care

    Science.gov (United States)

    Cerana, Maria Agustina; Park, Minjeong; Hess, Kenneth; Bruera, Eduardo

    2016-01-01

    less comfortable with EOL care because their patients might receive lower levels of both primary and secondary palliative care. PMID:27412394

  9. How integrated are neurology and palliative care services? Results of a multicentre mapping exercise.

    Science.gov (United States)

    van Vliet, Liesbeth M; Gao, Wei; DiFrancesco, Daniel; Crosby, Vincent; Wilcock, Andrew; Byrne, Anthony; Al-Chalabi, Ammar; Chaudhuri, K Ray; Evans, Catherine; Silber, Eli; Young, Carolyn; Malik, Farida; Quibell, Rachel; Higginson, Irene J

    2016-05-10

    Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson's Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9-88 MND, 3-25 Parkinsonism, and 0-5 MS). This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.

  10. Pediatric palliative care

    Directory of Open Access Journals (Sweden)

    Trapanotto Manuela

    2008-12-01

    Full Text Available Abstract The WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family. Its purpose is to improve the quality of life of young patients and their families, and in the vast majority of cases the home is the best place to provide such care, but for cultural, affective, educational and organizational reasons, pediatric patients rarely benefit from such an approach. In daily practice, it is clear that pediatric patients experience all the clinical, psychological, ethical and spiritual problems that severe, irreversible disease and death entail. The international literature indicates a prevalence of incurable disease annually affecting 10/10,000 young people from 0 to 19 years old, with an annual mortality rate of 1/10,000 young people from birth to 17 years old. The needs of this category of patients, recorded in investigations conducted in various parts of the world, reveal much the same picture despite geographical, cultural, organizational and social differences, particularly as concerns their wish to be treated at home and the demand for better communications between the professionals involved in their care and a greater availability of support services. Different patient care models have been tested in Italy and abroad, two of institutional type (with children staying in hospitals for treating acute disease or in pediatric hospices and two based at home (the so-called home-based hospitalization and integrated home-based care programs. Professional expertise, training, research and organization provide the essential foundations for coping with a situation that is all too often underestimated and neglected.

  11. Pediatric palliative care.

    Science.gov (United States)

    Benini, Franca; Spizzichino, Marco; Trapanotto, Manuela; Ferrante, Anna

    2008-12-01

    The WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family. Its purpose is to improve the quality of life of young patients and their families, and in the vast majority of cases the home is the best place to provide such care, but for cultural, affective, educational and organizational reasons, pediatric patients rarely benefit from such an approach. In daily practice, it is clear that pediatric patients experience all the clinical, psychological, ethical and spiritual problems that severe, irreversible disease and death entail. The international literature indicates a prevalence of incurable disease annually affecting 10/10,000 young people from 0 to 19 years old, with an annual mortality rate of 1/10,000 young people from birth to 17 years old. The needs of this category of patients, recorded in investigations conducted in various parts of the world, reveal much the same picture despite geographical, cultural, organizational and social differences, particularly as concerns their wish to be treated at home and the demand for better communications between the professionals involved in their care and a greater availability of support services. Different patient care models have been tested in Italy and abroad, two of institutional type (with children staying in hospitals for treating acute disease or in pediatric hospices) and two based at home (the so-called home-based hospitalization and integrated home-based care programs). Professional expertise, training, research and organization provide the essential foundations for coping with a situation that is all too often underestimated and neglected.

  12. Palliative and end-of-life care in nephrology: moving from observations to interventions.

    Science.gov (United States)

    Eneanya, Nwamaka D; Paasche-Orlow, Michael K; Volandes, Angelo

    2017-07-01

    In comparison with patients who have other serious illnesses, patients with advanced kidney disease have a higher rate of intensive care utilization at the end of life and receive palliative care less frequently. Consensus and clinical practice guidelines have therefore recommended the incorporation of palliative care earlier in the disease trajectory. This review summarizes recent literature on this aspect of care and will highlight future directions for patient-centered care within palliative nephrology. Patients with advanced kidney disease and their families frequently do not engage effectively with their clinicians to make informed treatment decisions or plan for care at the end of life. Furthermore, racial and ethnic minority patients continue to receive a lower rate of palliative care services compared to other racial groups. Interventions that promote better palliative care communication and education among nephrology clinicians, patients and their families are becoming increasingly more common in nephrology. Overall, improved understanding of the unique care needs of patients with advanced and end-stage kidney disease provides a solid foundation to improve palliative and end-of-life care delivery among diverse populations in nephrology.

  13. Single-Center Experience Providing Palliative Care to Pediatric Patients with End-Stage Renal Disease.

    Science.gov (United States)

    Keefer, Patricia; Lehmann, Katie; Shanley, Maureen; Woloszyk, Tara; Khang, Erin; Luckritz, Kera; Saul, D'Anna

    2017-08-01

    End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant. To better understand ESRD patients referred to palliative care, including their physical symptoms, topics discussed, and themes emerging during initial palliative care consultation. This study is a retrospective chart review of pediatric ESRD patients who received a palliative care consult. Physical symptoms, core topics, and themes were identified by the interprofessional study team. The study team found 35 patients met inclusion criteria during the study period. The most common standard palliative care metric noted was "complex or time-intensive communication and interdisciplinary social support." Pain was the most common physical symptom addressed with goals of care and communication the most common topics discussed. Themes emerging described the emotional distress of patients and parents as well as prognostic discussions. This study demonstrates one institution's experience with pediatric ESRD patients undergoing consultation with the pediatric palliative care service. More research is necessary in this population to better describe the best focus for palliative care teams.

  14. Asian and native Hawaiian family caregiver satisfaction with palliative care services in nursing homes.

    Science.gov (United States)

    Kataoka-Yahiro, Merle R; McFarlane, Sandra; Kealoha, May; Sy, Angela

    2016-03-01

    The aim of this study was to gauge Asian and native Hawaiian family satisfaction with palliative care services in two nursing homes in Hawaii, US. This is a mixed-method study using a convergent design. Nine nursing home family caregivers who had received palliative care services took part. They completed a Famcare-2 satisfaction survey and participated in a 1-hour interview. Descriptive analyses and directed content analysis were completed and results were compared. The Famcare-2 results indicated that family caregivers were satisfied with palliative care services. The interviews provided in-depth information on the major areas discussed in the survey-management of patient physical symptoms and comfort, information, family support, and patient psychological care. There is a need to address family caregiver and interdisciplinary nursing home staff communication based on culturally appropriate approaches for palliative as well as end of-life care services among Asians and native Hawaiians.

  15. Community-Partnered Collaboration to Build an Integrated Palliative Care Clinic: The View From Urology.

    Science.gov (United States)

    Bergman, Jonathan; Ballon-Landa, Eric; Lorenz, Karl A; Saucedo, Josemanuel; Saigal, Christopher S; Bennett, Carol J; Litwin, Mark S

    2016-03-01

    We partnered with patients, families, and palliative care clinicians to develop an integrated urology-palliative care clinic for patients with metastatic cancer. We assessed clinician satisfaction with a multidisciplinary palliative care clinic model. We conducted semi-structured interviews with 18 clinicians who practice in our integrated clinic. We analyzed transcripts using a multistage, cutting-and-sorting technique in an inductive approach based on grounded theory analysis. Finally, we administered a validated physician job satisfaction survey. Clinicians found that referring a patient to palliative care in the urology clinic was feasible and appropriate. Patients were receptive to supportive care, and clinicians perceived that quality of care improved following the intervention. An integrated, patient-centered model for individuals with advanced urologic malignancies is feasible and well received by practitioners. © The Author(s) 2014.

  16. Cooperating with a palliative home-care team: expectations and evaluations of GPs and district nurses

    DEFF Research Database (Denmark)

    Goldschmidt, Dorthe; Groenvold, Mogens; Johnsen, Anna Thit

    2005-01-01

    BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one...... month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced...... by 91 %, mainly due to improvement in symptom management, 'security', and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory...

  17. [Communication strategies used by health care professionals in providing palliative care to patients].

    Science.gov (United States)

    Trovo de Araújo, Monica Martins; da Silva, Maria Júlia Paes

    2012-06-01

    The objective of this study is to verify the relevance and utilization of communication strategies in palliative care. This is a multicenter qualitative study using a questionnaire, performed from August of 2008 to July of 2009 with 303 health care professionals who worked with patients receiving palliative care. Data were subjected to descriptive statistical analysis. Most participants (57.7%) were unable to state at least one verbal communication strategy, and only 15.2% were able to describe five signs or non-verbal communication strategies. The verbal strategies most commonly mentioned were those related to answering questions about the disease/treatment. Among the non-verbal strategies used, the most common were affective touch, looking, smiling, physical proximity, and careful listening. Though professionals have assigned a high degree of importance to communication in palliative care, they showed poor knowledge regarding communication strategies. Final considerations include the necessity of training professionals to communicate effectively in palliative care.

  18. Independent validation of the modified prognosis palliative care study predictor models in three palliative care settings.

    Science.gov (United States)

    Baba, Mika; Maeda, Isseki; Morita, Tatsuya; Hisanaga, Takayuki; Ishihara, Tatsuhiko; Iwashita, Tomoyuki; Kaneishi, Keisuke; Kawagoe, Shohei; Kuriyama, Toshiyuki; Maeda, Takashi; Mori, Ichiro; Nakajima, Nobuhisa; Nishi, Tomohiro; Sakurai, Hiroki; Shimoyama, Satofumi; Shinjo, Takuya; Shirayama, Hiroto; Yamada, Takeshi; Ono, Shigeki; Ozawa, Taketoshi; Yamamoto, Ryo; Tsuneto, Satoru

    2015-05-01

    Accurate prognostic information in palliative care settings is needed for patients to make decisions and set goals and priorities. The Prognosis Palliative Care Study (PiPS) predictor models were presented in 2011, but have not yet been fully validated by other research teams. The primary aim of this study is to examine the accuracy and to validate the modified PiPS (using physician-proxy ratings of mental status instead of patient interviews) in three palliative care settings, namely palliative care units, hospital-based palliative care teams, and home-based palliative care services. This multicenter prospective cohort study was conducted in 58 palliative care services including 16 palliative care units, 19 hospital-based palliative care teams, and 23 home-based palliative care services in Japan from September 2012 through April 2014. A total of 2426 subjects were recruited. For reasons including lack of followup and missing variables (primarily blood examination data), we obtained analyzable data from 2212 and 1257 patients for the modified PiPS-A and PiPS-B, respectively. In all palliative care settings, both the modified PiPS-A and PiPS-B identified three risk groups with different survival rates (Ppalliative care units, hospital-based palliative care teams, and home-based palliative care services. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  19. Palliative Care: Delivering Comprehensive Oncology Nursing Care.

    Science.gov (United States)

    Dahlin, Constance

    2015-11-01

    To describe palliative care as part of comprehensive oncology nursing care. A review of the palliative care, oncology, and nursing literature over the past 10 years. Palliative care is mandated as part of comprehensive cancer care. A cancer diagnosis often results in distress in the physical, psychosocial, spiritual, and emotional domains of care. Oncology nurses are essential in providing palliative care from diagnosis to death to patients with cancer. They address the myriad aspects of cancer. With palliative care skills and knowledge, oncology nurses can provide quality cancer care. There are many opportunities in which oncology nurses can promote palliative care. Oncology nurses must obtain knowledge and skills in primary palliative care to provide comprehensive cancer care. Copyright © 2015 Elsevier Inc. All rights reserved.

  20. Cardiovascular anatomy in children with bidirectional Glenn anastomosis, regarding the transcatheter Fontan completion.

    Science.gov (United States)

    Sizarov, Aleksander; Raimondi, Francesca; Bonnet, Damien; Boudjemline, Younes

    2017-11-13

    Transcatheter stent-secured completion of total cavopulmonary connection (TCPC) after surgical preparations during the Glenn anastomosis procedure has been reported, but complications from this approach have precluded its clinical acceptance. To analyse cardiovascular morphology and dimensions in children with bidirectional Glenn anastomosis, regarding the optimal device design for transcatheter Fontan completion without special surgical "preconditionings". We retrospectively analysed 60 thoracic computed tomography and magnetic resonance angiograms performed in patients with a median age of 4.1 years (range: 1.8-17.1 years). Additionally, we simulated TCPC completion using different intra-atrial stent-grafts in a three-dimensional model of the representative anatomy, and performed calculations to determine the optimal stent-graft dimensions, using measured distances. Two types of cardiovascular arrangement were identified: left atrium interposing between the right pulmonary artery (RPA) and inferior vena cava, with the right upper pulmonary vein (RUPV) orifice close to the intercaval axis (65%); and intercaval axis traversing only the right(-sided) atrial cavity, with the RUPV located posterior to the atrial wall (35%). In the total population, the shortest median RPA-to-atrial wall distance was 1.9mm (range: 0.6-13.8mm), while the mean intra-atrial distance along the intercaval axis was 50.1±11.2mm. Regardless of the arrangement, 83% of all patients required a deviation of at least 5.9±2.4mm (range: 1.2-12.7mm) of the stent-graft centre at the RUPV level anteriorly to the intercaval axis to avoid covering or compressing this vein. Fixing the anterior deviation of the curved stent-graft centre at 10mm significantly decreased the range of bend angle per every given RUPV-RPA distance. For both types of cardiovascular arrangement, after conventional bidirectional Glenn anastomosis, the intra-atrial curved stent-graft seemed most suitable for achieving

  1. Informed palliative care in nursing homes through the interRAI Palliative Care instrument: a study protocol based on the Medical Research Council framework.

    Science.gov (United States)

    Hermans, Kirsten; Spruytte, Nele; Cohen, Joachim; Van Audenhove, Chantal; Declercq, Anja

    2014-12-05

    Nursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC. This study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP 'Mood' of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes. This is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology

  2. Psychosocial issues in palliative care

    African Journals Online (AJOL)

    Repro

    circle. Honest reassuring discus- sion, normalising fear, is usually sufficient. SEXUALITY. Professionals working in palliative care must be prepared to help patients and their partners with their sexual needs.This whole area ... listening, a response of acceptance, an openness to individuality. . .to be a presence. CULTURE.

  3. Palliative Care In Salima District

    African Journals Online (AJOL)

    centres or Ndi Moyo. Although it is still in its infancy Ndi. Moyo is now well placed to become the flagship for palliative care in Malawi. Table 1 - Diagnosis of NdiMoyo patients. Diagnosis. 24 Months. Aug '06-Sept '08. Frequency. No. %. Abdominal Tumour. 1. 0.38%. Ameloblastoma, cancer. 1. 0.38%. Anal cancer. 1. 0.38%.

  4. Palliative care in the community

    OpenAIRE

    Munday, Dan; Dale, Jeremy

    2007-01-01

    Primary care has a vital role in delivering palliative care. In most developed countries more people die in hospital than at home, although substantially more people would prefer to die at home. Primary care professionals play a central role in optimising available care, but they often lack the processes and resources to do this effectively.

  5. [Nutritional problems in palliative medicine].

    Science.gov (United States)

    Ollenschläger, G

    2000-09-01

    Malnutrition is a frequent problem in the palliative care of the seriously ill and dying. Want of appetite and los of weight are direct symptoms of patients with consumptive infectional diseases (AIDS, TBC) as well as cancer or geriatric patients. Severe malnutrition significantly contributes to a loss of quality of life and increases morbidity of palliative patients. The subjective well-being of seriously ill patients is heavily influenced by want of appetite and loss of weight. Patients often find want of appetite and the incapability to eat as pressing as the physical impairment caused by the disease. Therefore the sole aim of palliative dietotherapy has to be to strengthen the general physical and mental condition of the patient. A specific training of home care staff and relatives of seriously ill patients in dealing sensitively with this problem of care is desirable. Above all, in-patient treatment of affected patients for the sole purpose of feeding has to be avoided. Aggressive dietotherapeutic interventions, especially artificial feeding, should be refrained from as far as possible in the terminal phase. Only if the prognosis of a patient in palliative treatment is improving contrary to expectations are strategies of curative dietotherapy valid.

  6. Palliative care in neuromuscular diseases

    NARCIS (Netherlands)

    de Visser, Marianne; Oliver, David J.

    2017-01-01

    Purpose of review Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating

  7. Clinical benefit of palliative radiation therapy in advanced gastric cancer

    Energy Technology Data Exchange (ETDEWEB)

    Kim, Michelle M.; Rana, Vishal; Janjan, Nora A. (Dept. of Radiation Oncology, Univ. of Texas M.D. Anderson Cancer Center, Houston, Texas (US)) (and others)

    2008-03-15

    Background. Local progression of advanced gastric cancer often manifests as bleeding, dysphagia/obstruction, or pain. We evaluated the magnitude and durability of palliation with radiotherapy (RT). Material and methods. From 1996 to 2004, 37 gastric cancer patients were treated with palliative RT (median dose 35Gy in 14 fractions). Nearly two-thirds of all patients received concurrent chemoradiation therapy (CRT). Index pre-treatment symptoms were gastric bleeding, dysphagia/obstruction, and pain in 54%, 43%, and 19% of patients, respectively. Results. The rates of control for bleeding, dysphagia/obstruction, and pain were 70% (14/20), 81% (13/16), and 86% (6/7), respectively. These symptoms were controlled without additional interventions for a median of 70%, 81%, and 49% of the patient's remaining life, respectively. Patients receiving CRT had a trend towards better median overall survival than those receiving RT alone (6.7 vs. 2.4 months, p=0.08). Lower (<41 Gy) biologically effective dose (BED, assuming an alpha/beta ratio of 10 for early responding tissues) predicted for poorer local control (6-month local control 70% vs. 100%, p=0.05) while T4 tumors had a trend towards inferior local control (6-month LC 56% vs. 100%, p=0.06). Discussion. Palliative RT controls symptoms for most of the remaining life in the majority of gastric cancer patients. The role of a higher dose of RT (BED >= 41 Gy), especially in patients with T4 tumors, remains to be established. In order to accurately define the role for radiotherapy in palliation of these symptoms, prospective randomized studies need to be conducted.

  8. [Ethical aspects of palliative medicine].

    Science.gov (United States)

    Rehmann-Sutter, C; Lehnert, H

    2016-10-01

    The aim of palliative medicine is to adequately care for and attend to patients suffering from life-threatening and incurable medical conditions according to their needs. This implies that for these patients it is not a matter of dealing with diseases that can be treated separately but with their existence in the face of their approaching death. This article investigates which ethical questions are currently prioritized for discussion in palliative medicine. Review of the current medical and ethical literature and own reflections with a relational ethics approach that puts patient wishes at the centre of attention. Palliative medicine is not a "luxury medicine" but has to be considered as primary care to which every person is entitled. If there is a need for improvement of care, promoting it is an ethical obligation. In this respect the question of a "good death" is extremely complex. The term is connected to the ethics of a good life and includes the dimensions of happiness-suffering as well as meaning-futility; therefore, the best possible treatment of symptoms, most of all pain is just as important as recognizing subjective questions of meaning. Dealing with the wishes of patients, including possible wishes to die, are the starting point for elaborating palliative care measures. It is concerned with finding the right point in time for each patient individually, in their best interests and according to their wishes, at which dying should no longer be held back but for their own benefit the patient should be accompanied and supported during dying. In the current construction of palliative medicine, including its normative configuration within the law and medical ethics, the criteria which are essential for the quality of life up to death are being discussed.

  9. Pregnancy in complex CHD: focus on patients with Fontan circulation and patients with a systemic right ventricle.

    Science.gov (United States)

    Khan, Abigail; Kim, Yuli Y

    2015-12-01

    The majority of children with congenital heart disease (CHD) now survive into adulthood, and many women with CHD want to pursue pregnancy. Pregnancy represents a complex issue for the CHD care provider. It requires balancing the interests of the woman against the risk to her health during pregnancy, while also factoring in the long-term risks to her health and the risk to her fetus. Our knowledge about this subject has been historically limited by lack of data regarding the outcome of pregnancy in CHD; however, in recent years, more data have begun to emerge. In this review, we will summarise what is known about risk assessment in pregnant CHD patients. We provide a framework for healthcare providers managing pregnancy in this population, with focus on the systemic right ventricle and the Fontan operation.

  10. Catheter Ablation for Three Focal Atrial Tachycardias in a Patient with Prior Fontan Surgery for Tricuspid Atresia

    Directory of Open Access Journals (Sweden)

    Masayoshi Kofune, MD

    2007-01-01

    Full Text Available A 28-year-old woman who had undergone Fontan surgery for tricuspid atresia at 6 years of age was admitted to Nihon University Hospital due to syncope. Supraventricular tachycardia at 141 beats/min was induced with isoproterenol infusion during a tilt table test. The patient showed atresia of the right atrial orifice of the coronary sinus with persistent drainage into the left superior vena cava. Electrophysiological study was performed. Atrial tachycardia (AT was induced by rapid atrial pacing. The AT originated in the lower lateral right atrium and electroanatomical mapping showed a focal origin. After successful ablation of the AT, two additional ATs were induced. These ATs were also shown to be of focal origin and were successfully ablated without recurrence during follow-up.

  11. The Worldwide Hospice Palliative Care Alliance.

    Science.gov (United States)

    Connor, Stephen R; Gwyther, Elizabeth

    2018-02-01

    The Worldwide Hospice Palliative Care Alliance (WHPCA) is an international non-governmental organization registered as a charity in England and Wales that was established in 2008 following a series of international gatherings that highlighted the important need for palliative care to be included in global policy and health planning. The vision of the WHPCA is a world with universal access to hospice and palliative care. Its mission is to foster, promote and influence the delivery of affordable, quality palliative care. This article describes the evolution of the WHPCA and what it has been able to accomplish in the eight years since its formation. These accomplishments include effective advocacy with United Nations bodies, acceptance as a non-governmental organization in official relations with the World Health Organization and the UN Economic and Social Council, publication of many position papers on critical aspects of palliative care, publication of the Global Atlas of Palliative Care at the End of Life, development of toolkits for palliative care development, publication of the international edition of ehospice, and management of World Hospice and Palliative Care Day each year. Some of the many challenges to the growth and development of palliative care globally are described along with future plans. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  12. Palliative care and pain treatment in the global health agenda.

    Science.gov (United States)

    De Lima, Liliana

    2015-04-01

    The Global Atlas of Palliative Care at the End of Life, published by the Worldwide Palliative Care Alliance (WPCA) jointly with the World Health Organization (WHO) estimated that every year >20 million patients need palliative care (PC) at the end of life. Six percent of these are children. According to the Atlas, in 2011, approximately 3 million patients received PC and only 1 in 10 people in need is currently receiving it. Although most PC is provided in high-income countries (HIC), almost 80% of the global need is in low- and middle-income countries (LMIC). Only 20 countries have PC well integrated into their health-care systems. In regards to opioids, >5 billion people (83% of the world's population) live in countries with low to nonexistent access, 250 million (4%) have moderate access, and only 460 million (7%) have adequate access. In order for PC and pain treatment strategies to be effective, they must be incorporated by governments into all levels of their health care systems. In 1990, the WHO pioneered a public health strategy to integrate PC into existing health care systems which includes four components: (1) appropriate policies, (2) adequate availability of medications, (3) education of health care workers and the public, and (4) implementation of PC services at all levels throughout the society. This topical review describes the current status of the field, and presents several initiatives by United Nations (UN) organizations and the civil society to improve access to PC and to pain treatment for patients in need.

  13. Specialist palliative care nursing and the philosophy of palliative care: a critical discussion.

    Science.gov (United States)

    Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine

    2017-07-02

    Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.

  14. Undergraduate curricula in palliative medicine: a systematic analysis based on the palliative education assessment tool.

    LENUS (Irish Health Repository)

    Schiessi, C

    2013-01-01

    By law in 2013, palliative medicine will be integrated into the undergraduate curriculum as part of a mandatory training program and examinations at German medical schools. For this reason a national curriculum in palliative medicine has to be developed.

  15. Health economics of a palliative care unit for terminal cancer patients: a retrospective cohort study.

    Science.gov (United States)

    Jung, Hyun-myung; Kim, Jinhyun; Heo, Dae Seog; Baek, Sun Kyung

    2012-01-01

    The objective of this study was to evaluate cost-reduction efficacy of a palliative care unit (PCU) by analyzing medical expenses of terminal cancer patients. Hospital bills and medical records of 656 patients who died of cancer from January to December 2007 at one university hospital in Seoul were analyzed. Of the total 656 patients, 126 died in the PCU. Compared to non-PCU patients, PCU patients were more likely to permit do-not-resuscitate (DNR), visit the emergency room (ER), and receive palliative chemotherapy (P care unit (ICU), used a ventilator, and received hemodialysis more often (P care could be realized.

  16. Books Received

    Indian Academy of Sciences (India)

    VG Bhide. Shekhar Phatak and Associates. 1998, Rs.80. Books Received. Biotechnological Methods of. Pollution Control. S A Abbasi and E Ramasami. Universities Press. 1999, Rs.1S0. The Penguin India Career Guide,. Vol 2, The Scien~es. Usha Albuquerque. Penguin Books. 1996, Rs.250. Fixed Points. Yu A Shashldn.

  17. Books Received

    Directory of Open Access Journals (Sweden)

    Murat Akser

    2014-10-01

    Full Text Available In 2014 we have received a variety of books onc inema and media from these publishers: Bloomsbury Academic, Cambridge Scholars Publishing, Continuum, Edinburgh University Press, Focal Press, Intellect, Paradigm, Peter Lang, Routledge, University of California Press, Wayne State University Press.

  18. Books Received

    Indian Academy of Sciences (India)

    Books Received. Challenge and Thrill of Pre-College. Mathematics. V Krishnamurthy et al. New Age International. 1996, Rs.220. Mathematics for Science. S M Uppal and H M Humphreys. New Age International. 1996, Rs.17S. Physics for Engineers. M R Srinivasan. New Age Publications. 1996. Statement about ownership ...

  19. End-of-life care for neonates and infants: the experience and effects of a palliative care consultation service.

    Science.gov (United States)

    Pierucci, R L; Kirby, R S; Leuthner, S R

    2001-09-01

    Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study was to describe end-of-life care for infants, including analysis of palliative care consultations conducted in this population. We hypothesized that the palliative care consultations performed had an impact on the infants' end-of-life care. A retrospective chart review using the "End of Life Chart Review" from the Center to Improve Care for the Dying was conducted. The participants were the patients at Children's Hospital of Wisconsin who died at palliative care consultations. The rate of consultations increased from 5% of the infant deaths in 1994 to 38% of the infant deaths in 1997. Infants of families that received consultations had fewer days in intensive care units, blood draws, central lines, feeding tubes, vasopressor and paralytic drug use, mechanical ventilation, cardiopulmonary resuscitation, and x-rays, and the families had more frequent referrals for chaplains and social services than families that did not have palliative care consultations. This study describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation. This suggests that palliative care consultation may enhance end-of-life care for newborns.

  20. Early palliative care for adults with advanced cancer.

    Science.gov (United States)

    Haun, Markus W; Estel, Stephanie; Rücker, Gerta; Friederich, Hans-Christoph; Villalobos, Matthias; Thomas, Michael; Hartmann, Mechthild

    2017-06-12

    Evaluation) and created a 'Summary of findings' table. We included seven randomised and cluster-randomised controlled trials that together recruited 1614 participants. Four studies evaluated interventions delivered by specialised palliative care teams, and the remaining studies assessed models of co-ordinated care. Overall, risk of bias at the study level was mostly low, apart from possible selection bias in three studies and attrition bias in one study, along with insufficient information on blinding of participants and outcome assessment in six studies.Compared with usual/standard cancer care alone, early palliative care significantly improved health-related quality of life at a small effect size (SMD 0.27, 95% confidence interval (CI) 0.15 to 0.38; participants analysed at post treatment = 1028; evidence of low certainty). As re-expressed in natural units (absolute change in Functional Assessment of Cancer Therapy-General (FACT-G) score), health-related quality of life scores increased on average by 4.59 (95% CI 2.55 to 6.46) points more among participants given early palliative care than among control participants. Data on survival, available from four studies enrolling a total of 800 participants, did not indicate differences in efficacy (death hazard ratio 0.85, 95% CI 0.56 to 1.28; evidence of very low certainty). Levels of depressive symptoms among those receiving early palliative care did not differ significantly from levels among those receiving usual/standard cancer care (five studies; SMD -0.11, 95% CI -0.26 to 0.03; participants analysed at post treatment = 762; evidence of very low certainty). Results from seven studies that analysed 1054 participants post treatment suggest a small effect for significantly lower symptom intensity in early palliative care compared with the control condition (SMD -0.23, 95% CI -0.35 to -0.10; evidence of low certainty). The type of model used to provide early palliative care did not affect study results. One RCT reported

  1. [The present and future of community/home-based palliative care in Taiwan].

    Science.gov (United States)

    Ueng, Ruey-Shiuan; Hsu, Su-Hsuan; Shih, Chih-Yuan; Huang, Sheng-Jean

    2015-04-01

    In Taiwan, the Department of Health (DOH) has implemented regulations and policies related to hospice and palliative care since 1995. Taiwan is the first country in Asia to have a Natural Death Act, promulgated in 2000. Although recognition of the need for palliative care in non-cancer terminally ill patients is increasing, at present, the needs of these patients are often not met. Moreover, while a majority of the population prefers to die at home, the percentage of patients who die in the home setting remains small. The palliative care system should be adjusted to improve the accessibility and continuity of care based on the needs of patients. Therefore, the Jin-Shan Branch of the National Taiwan University Hospital has run a pilot community palliative care service model since 2012. National Health Insurance reimbursement was introduced in 2014 for community-based palliative care services. Establishing a formal system of community-based palliative care should be encouraged in order to improve the quality of care at the end of life and to allow more patients to receive end-of-life care and die in their own communities. This system will require that skilled nurses provide discharge planning, symptoms control, end-of-life communications, social-resources integration, and social-support networks in order to achieve a high quality of end-of-life care.

  2. Principles of a paediatric palliative care consultation can be achieved with home telemedicine.

    Science.gov (United States)

    Bradford, Natalie K; Armfield, Nigel R; Young, Jeanine; Herbert, Anthony; Mott, Christine; Smith, Anthony C

    2014-10-01

    We compared the records of paediatric palliative consultations undertaken face-to-face, with telemedicine consultations undertaken in patients' homes. A convenience sample of consecutive paediatric palliative care patients was identified from the hospital's palliative care database. A total of 100 consultations was reviewed (50 telemedicine consultations during home visits and 50 face-to-face consultations) according to 14 established principles and components of a paediatric palliative care consultation. In the telemedicine group there was a higher proportion of patients in a stable condition (58% vs 7%), and a lower proportion of patients in terminal phase (2% vs 17%). Discussion about pain and anorexia were significantly more common in the telemedicine group. Discussion about follow up was significantly more common in the telemedicine group (86% vs 56%), whilst resuscitation planning was more common in deteriorating patients receiving inpatient care. All other components and principles of a palliative care consultation were documented equally regardless of method of consultation. The findings confirm that palliative consultations via telemedicine are just as effective as face-to-face consultations in terms of the documented components of the consultation. © The Author(s) 2014 Reprints and permissions:]br]sagepub.co.uk/journalsPermissions.nav.

  3. Awareness of palliative care and end-of-life options among African Canadians in Nova Scotia.

    Science.gov (United States)

    Maddalena, Victor; Bernard, Wanda Thomas; Davis-Murdoch, Sharon; Smith, Donna

    2013-04-01

    To assess, using qualitative methods, the knowledge African Canadians living in Nova Scotia have regarding their options for palliative and end-of-life (EOL) care. This project engaged caregivers in a Black community in Nova Scotia, Canada, in an exploration of palliative and EOL care. A group of six caregivers who cared for someone who had died were recruited through purposive sampling. The caregivers met three times to (1) discuss their experiences, (2) receive a presentation from the palliative care service, and (3) discuss whether those services would be beneficial. This was followed by a community meeting to discuss the findings. Knowledge of options for palliative care services is limited. Family centered care may be a reason why "system" is generally not aware of the EOL experiences of African Nova Scotians. Information about palliative care services is not filtering down to the community in a way that is meaningful to families. Families tend to self-select services that assist them in providing care in the home setting. There is a need to engage Black communities and palliative care services in developing culturally appropriate services.

  4. Palliative care communication in oncology nursing.

    Science.gov (United States)

    Goldsmith, Joy; Ferrell, Betty; Wittenberg-Lyles, Elaine; Ragan, Sandra L

    2013-04-01

    Oncology nurses consistently exhibit distress when communicating about end-of-life topics with patients and families. Poor communication experiences and processes correlate with emotional distress, moral distress, and work-related stress. The National Consensus Project (NCP) for Quality Palliative Care developed clinical practice guidelines to establish quality standards for the practice of palliative care. NCP's guidelines are expressly intended as an interdisciplinary document and are representative of the inherent interdisciplinary nature of palliative care. Communication's value to palliative and oncology nursing is unique because those two specialties include a high frequency of challenging interactions for patients, families, and healthcare professionals. The COMFORT communication curriculum, a holistic model for narrative clinical communication in practice developed for use in early palliative care, is posed as a resource for oncology nurses with a series of practice case examples presented against the backdrop of NCP's eight domains of quality palliative care.

  5. What determines duration of palliative care before death for patients with advanced disease? A retrospective cohort study of community and hospital palliative care provision in a large UK city.

    Science.gov (United States)

    Bennett, Michael I; Ziegler, Lucy; Allsop, Matthew; Daniel, Sunitha; Hurlow, Adam

    2016-12-09

    For patients with advanced cancer, several randomised controlled trials have shown that access to palliative care at least 6 months before death can improve symptoms, reduce unplanned hospital admissions, minimise aggressive cancer treatments and enable patients to make choices about their end-of-life care, including exercising the choice to die at home. This study determines in a UK population the duration of palliative care before death and explores influencing factors. This retrospective cohort study analysed referrals to three specialist palliative care services; a hospital-based inpatient palliative care team, and two community-based services (hospices). For each patient referred to any of the above services we identified the date of first referral to that team and calculated the median interval between first referral and death. We also calculated how referral time varied by age, sex, diagnosis and type of palliative care service. 4650 patients referred to specialist palliative care services in Leeds UK between April 2012 and March 2014. Median age of the sample was 75 years. 3903 (84.0%) patients had a diagnosis of cancer. Age, diagnosis and place of referral were significant predictors of duration of palliative care before death. Age was independently associated (J=2 672 078, z=-392046.14, r=0.01) with duration of palliative care regardless of diagnosis. Patients over 75 years have 29 fewer days of palliative care than patients under 50. Patients with non-cancer diagnoses have 13 fewer days of palliative care than patients with cancer. Additionally, patients referred to hospital palliative care receive 24.5 fewer days palliative care than those referred to community palliative care services. The current timing of referral to palliative care may limit the benefits to patients in terms of improvements in end-of-life care, particularly for older patients and patients with conditions other than cancer. Published by the BMJ Publishing Group Limited. For

  6. Patients' perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study.

    Science.gov (United States)

    Sandsdalen, Tuva; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Rystedt, Ingrid; Wilde-Larsson, Bodil

    2016-08-24

    Patients' perceptions of care quality within and across settings are important for the further development of palliative care. The aim was to investigate patients' perceptions of palliative care quality within settings, including perceptions of care received and their subjective importance, and contrast palliative care quality across settings. A cross-sectional study including 191 patients in late palliative phase (73 % response rate) admitted to hospice inpatient care, hospice day care, palliative units in nursing homes, and home care was conducted, using the Quality from the Patients' Perspective instrument-palliative care (QPP-PC). QPP-PC comprises four dimensions and 12 factors; "medical-technical competence" (MT) (2 factors), "physical-technical conditions" (PT) (one factor), "identity-orientation approach" (ID) (4 factors), "sociocultural atmosphere" (SC) (5 factors), and three single items (S); medical care, personal hygiene and atmosphere. Data were analysed using paired-samples t-test and analysis of covariance while controlling for differences in patient characteristics. Patients' perceptions of care received within settings showed high scores for the factors and single items "honesty" (ID) and "atmosphere" (S) in all settings and low scores for "exhaustion" (MT) in three out of four settings. Patients' perceptions of importance scored high for "medical care" (S), "honesty" (ID), "respect and empathy" (ID) and "atmosphere" (S) in all settings. No aspects of care scored low in all settings. Importance scored higher than perceptions of care received, in particular for receiving information. Patients' perceptions of care across settings differed, with highest scores in hospice inpatient care for the dimensions; ID, SC, and "medical care" (S), the SC and "atmosphere" (S) for hospice day care, and "medical care" (S) for palliative units in nursing homes. There were no differences in subjective importance across settings. Strengths of services related to

  7. The Advanced Practice Registered Nurses Palliative Care Externship: A Model for Primary Palliative Care Education.

    Science.gov (United States)

    Dahlin, Constance; Coyne, Patrick J; Cassel, J Brian

    2016-07-01

    Nationally, the contribution of palliative care to high-quality health care continues to be recognized resulting in demand for palliative care services. This has resulted in an expected shortage of clinicians with palliative care knowledge and experience. The education and scope of practice of advanced practice registered nurses (APRNs) provides an ideal foundation for further palliative care education and training to fill this gap. The authors sought a method to provide midcareer APRNs with education and training in primary palliative care. The program took place at a well-established palliative care program at an academic medical center. This article describes an Institutional Review Board-approved week-long intensive APRN externship designed to provide education and training in primary palliative care for APRNs across disease populations. To best educate these APRNs, who did not have formal palliative care in their graduate education, the externship includes didactic, experiential, and clinical components to meet the needs of APRNs with minimal palliative care education and/or experiences. Precourse and postcourse data collection was performed. Results demonstrated increased knowledge, skills, and confidence in palliative care. This is a sustainable model for primary palliative care and midcareer APRNs who wish to enter palliative care. It is replicable for other disciplines as well.

  8. Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care

    Science.gov (United States)

    Meier, Diane E

    2011-01-01

    Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Findings: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. PMID:21933272

  9. Hospice Enrollment After Referral to Community-Based, Specialist Palliative Care: Impact of Telephonic Outreach.

    Science.gov (United States)

    Riggs, Alexa; Breuer, Brenda; Dhingra, Lara; Chen, Jack; Portenoy, Russell K; Knotkova, Helena

    2017-08-01

    In the U.S., palliative care programs improve access to hospice through enhanced communication and efficiencies in hospice eligibility review and enrollment. For community-based programs, this task may begin with telephone contact. To evaluate the incidence and predictors of hospice enrollment following telephonic outreach by a nurse after referral to a community-based, specialist palliative care program. During 2012-2014, 299 consecutive patients who were referred to a palliative care program and subsequently enrolled in hospice provided electronic health record data for a retrospective cohort study. Those who elected hospice after telephonic outreach and before the first palliative care home visit, were compared with those who enrolled in hospice after palliative care visits began, using both bivariate and multivariate analyses. Mean (SD) age was 74.1 (18.7) years; 60.2% were women, 44.4% were White, 22.5% were Hispanic, 20.9% were Black, and 9.6% were Asian. In total, 177 patients (59.2%) elected hospice following telephonic outreach and 122 (40.8%) enrolled after home visits began. The former group received a mean of 4.5 calls (median = 3.0) before hospice election. In multivariate analysis, hospice enrollment following telephonic outreach alone was associated with hospital or nursing home referral, not married status, and poor performance status (all P palliative care program did so following telephonic outreach alone. Both sociodemographic and clinical characteristics predicted this outcome. Palliative care programs can improve hospice access through initial telephonic outreach by trained professionals. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  10. Identification of the palliative phase in people with dementia: a variety of opinions between healthcare professionals.

    Science.gov (United States)

    van Riet Paap, Jasper; Mariani, Elena; Chattat, Rabih; Koopmans, Raymond; Kerhervé, Hélène; Leppert, Wojciech; Forycka, Maria; Radbruch, Lukas; Jaspers, Birgit; Vissers, Kris; Vernooij-Dassen, Myrra; Engels, Yvonne

    2015-11-04

    People with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care. The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care. Teams with in total 84 professionals working in 13 long-term care settings from 6 countries (France, Germany, Italy, Norway, Poland and the Netherlands) received a case-vignette concerning a person with dementia recently admitted to a nursing home. Teams were asked to discuss when they considered people with dementia eligible for palliative care. The constant comparative method was used to analyse their answers. Three different time points in the disease trajectory when people with dementia were considered to be eligible for palliative care were extracted: (1) early in the disease trajectory; (2) when signs and symptoms of advanced dementia are present; and (3) from the time point that curative treatment of co-morbidities is futile. Yet, none of these time points was uniformly considered by the professional teams across Europe. In some cases, professionals working in the same nursing home didn't even reach consensus when considering persons with dementia eligible for palliative care. The results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care.

  11. Palliative care interventions in advanced dementia (Review)

    OpenAIRE

    Murphy, Edel; Froggatt, Katherine Alison; Connolly, S; O'Shea, Eamonn; Sampson, Elisabeth; Casey, Dympna; Devane, Declan

    2016-01-01

    Background Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer but for more than a decade, there have been increased calls worldwide to extend palliative ...

  12. Nursing perspectives on palliative care 2015.

    Science.gov (United States)

    Fitch, Margaret I; Fliedner, Monika C; O'Connor, Margaret

    2015-07-01

    Nurses have an integral role in promoting and providing early palliative care. The provision of palliative care is aligned to the basic tenants of nursing in providing holistic care to individuals and family members. In many parts of the world nurses are the primary health care provider in a community and a primary link between patients and other members of the heath care team. Unfortunately, access to accredited palliative care education remains a challenge for nurses.

  13. Surgical management of competing pulmonary blood flow affects survival before Fontan/Kreutzer completion in patients with tricuspid atresia type I.

    Science.gov (United States)

    Wilder, Travis J; Ziemer, Gerhard; Hickey, Edward J; Gruber, Peter J; Karamlou, Tara; Kirshbom, Paul M; Blackstone, Eugene H; DeCampli, William M; Williams, William G; McCrindle, Brian W

    2015-11-01

    To determine the association between surgical management of pulmonary blood flow (PBF) at initial and staged procedures with survival to Fontan/Kreutzer operation (Fontan) in patients with tricuspid atresia. Infants aged SCPC; n = 63; 21%). Multiphase parametric-hazard models were used to analyze competing outcomes. Risk-adjusted 6-year survival was lower after SPS (85%; P = .04) versus PAB (93%) or SCPC (93%). Survival after SPS when the main pulmonary artery (MPA) was closed (n = 21) or banded (n = 4) was 60%, versus 93% without MPA intervention (P = .02). After SPS, survival before SCPC was lower with an open ductus arteriosus (n = 7; 76% vs 97%; P = .02). Similarly, after SPS, risk-adjusted survival was similar to that for patients who had an initial PAB or SCPC when MPA intervention was avoided and the ductus arteriosus either closed spontaneously before SPS, or was closed during SPS. For all patients reaching SCPC (n = 277), survival to Fontan was not significantly influenced by whether PBF persisted through the MPA. Tricuspid atresia patients with SPS represent a high-risk subgroup. Avoiding an open ductus arteriosus and concomitant MPA intervention during SPS may help mitigate the risk associated with SPS. The presence of antegrade PBF through the MPA, at initial and staged operations, did not significantly influence survival to Fontan operation. Copyright © 2015 The American Association for Thoracic Surgery. Published by Elsevier Inc. All rights reserved.

  14. Is admittance to specialised palliative care among cancer patients related to sex, age and cancer diagnosis? A nation-wide study from the Danish Palliative Care Database (DPD).

    Science.gov (United States)

    Adsersen, Mathilde; Thygesen, Lau Caspar; Jensen, Anders Bonde; Neergaard, Mette Asbjoern; Sjøgren, Per; Groenvold, Mogens

    2017-03-23

    Specialised palliative care (SPC) takes place in specialised services for patients with complex symptoms and problems. Little is known about what determines the admission of patients to SPC and whether there are differences in relation to institution type. The aims of the study were to investigate whether cancer patients' admittance to SPC in Denmark varied in relation to sex, age and diagnosis, and whether the patterns differed by type of institution (hospital-based palliative care team/unit, hospice, or both). This was a register-based study of adult patients living in Denmark who died from cancer in 2010-2012. Data sources were the Danish Palliative Care Database, Danish Register of Causes of Death and Danish Cancer Registry. The associations between the explanatory variables (sex, age, diagnosis) and admittance to SPC were investigated using logistic regression. In the study population (N = 44,548) the overall admittance proportion to SPC was 37%. Higher odds of overall admittance to SPC were found for women (OR = 1.23; 1.17-1.28), younger patients (palliative care teams/units, whereas higher admission of younger patients was more pronounced for hospital-based palliative care teams/units. Patients with brain cancer were more often admitted to hospices, whereas patients with prostate cancer were more often admitted to hospital-based palliative care teams/units. It is unlikely that the variations in relation to sex, age and cancer diagnoses can be fully explained by differences in need. Future research should investigate whether the groups having the lowest admittance to SPC receive sufficient palliative care elsewhere.

  15. PALLIATIVE CARE IN SLOVENIA AND FUTURE CHALLENGES

    Directory of Open Access Journals (Sweden)

    Urška Lunder

    2003-11-01

    Full Text Available Background. Palliative care in Slovene health care system isn’t developed. Comparison with other countries is not possible in many aspects. There is no complete or appropriately educated palliative care team in hospitals or in primary care. Palliative care departments in hospitals and nursing homes do not exist. Holistic palliative home care is offered only by Slovene association of hospice. The pressure on nursing homes and nursing service departments is getting stronger. Standards and norms for staff, for living conditions and medical equipment do not allow any more admittances of patients with the needs of high category of care in these institutions.Conclusions. Indirect indicators of level of palliative care (e.g. morphine consumption, palliative care departments, home care network, undergraduate education, specialisation and research put Slovenia at the bade of the Europe. Statistics predict aging of population and more patients are also living with consequences of progressive chronic diseases and cancer.In the new healthcare reform there is an opportunity for palliative care to get an equal place in healthcare system. With coordinated implementation of palliative care departments, consultant teams and mobile specialistic teams, palliative care could reach a better level of quality. At the same time, quality permanent education is essential.

  16. [Palliative care and Alzheimer disease].

    Science.gov (United States)

    Lopez-Tourres, F; Lefebvre-Chapiro, S; Fétéanu, D; Trivalle, C

    2009-06-01

    Although end-of-life care is a relatively common option for patients with terminal cancer, it has become available only recently for patients with Alzheimer's disease. Alzheimer's disease is a chronic process of gradual deterioration of cognitive ability and the resulting deficits in activities of daily living. The chronic disease course of Alzheimer's disease gives to the clinician the opportunity to look ahead and plan for the final stages of care. This article presents a review of palliative care interventions for patients with Alzheimer's disease and other dementias. End-of-life care for individuals with end-stage Alzheimer's disease is increasingly important because of the increasing number of patients with this disease. However, there are barriers to providing high-quality end-of-life care. Currently, palliative care is not optimal for Alzheimer's patients. Health care systems and clinicians should make efforts to improve the suffering of patients with this disease and their caregivers.

  17. PALLIATIVE CARE AND MEDICAL COMMUNICATION

    Directory of Open Access Journals (Sweden)

    Cristina Anca COLIBABA

    2015-06-01

    Full Text Available This article outlines learners’ difficulty in acquiring and practicing palliative medical skills necessary in medical procedures due to limited technologically state-of-the art language learning support to facilitate optimum access for medical students to the European medicine sector and offers as a potential solution the Palliative Care MOOC project (2014-1-RO01-KA203-002940. The project is co-financed by the European Union under the Erasmus+ program and coordinated by the Gr.T.Popa University of Medicine and Pharmacy Iasi, Romania. The article describes the project idea and main objectives, highlighting its focus and activities on developing innovative guidelines on standardized fundamental medical procedures, as well as clinical language and communication skills. The project thus helps not only medical lecturers and language teachers who teach medical students, but also the medical students themselves and the lay people involved in causalities.

  18. [Hospice program and palliative medicine].

    Science.gov (United States)

    Nakagami, Y

    1997-05-01

    Hospice and palliative care have important roles for cancer patients in an incurable state to alleviate their total pain and to achieve the best quality of life. Interdisciplinary team-doctors, nurses, therapists, social workers and so on provide effective support in order to fulfill the varying needs of patients and families. Pain relief as a palliative medicine is most urgently required by seventy percent of patients on admission to our Hospice at the Salvation Army Kiyose Hospital. A case is presented with some comments on pain management. Music therapy is also introduced. This is one of the complementary methods for consolation of the mind and body of patients. Some of them seem to find it beneficial.

  19. Smartphone applications in palliative homecare

    Directory of Open Access Journals (Sweden)

    Sunil R Dhiliwal

    2015-01-01

    Full Text Available Smartphone applications in healthcare delivery are a novel concept and is rapidly gaining ground in all fields of medicine. The modes of e-communications such as e-mail, short message service (SMS, multimedia messaging service (MMS and WhatsApp in palliative care provides a means for quick tele-consultation, information sharing, cuts the waiting time and facilitates initiation of the treatment at the earliest. It also forms a means of communication with local general practitioner and local health care provider such that continuity of the care is maintained. It also minimizes needless transport of the patient to hospital, prevents needless hospitalization and investigations and minimizes cost and logistics involved in the care process. The two case studies provided highlights the use of smartphone application like WhatsApp in palliative care practice and demonstrates its utility.

  20. Palliative Care and Death Anxiety

    Directory of Open Access Journals (Sweden)

    Figen Inci

    2012-06-01

    Full Text Available Diminishing treatment alternatives, losing hope for a possible recovery, insufficient control of pain and inability to provide the necessary technical support lead palliative care to bring multiple problems with itself. Along with technical and professional challenges, palliative care can put a humanitarian strain on the nurse. Caring for a dying patient is a worrisome experience which causes spiritual pain. An increase in nurses’ death anxiety may cause unwillingness to be together with a dying patient. In terms of the end of life, it is expected that the nurse stands by patient’s family to help them in sustaining their psychosocial wellness. In order to meet this expectation, nurses should get a qualitative training for end of life care along with good interpersonal communication skills and coping strategies.

  1. Smartphone applications in palliative homecare.

    Science.gov (United States)

    Dhiliwal, Sunil R; Salins, Naveen

    2015-01-01

    Smartphone applications in healthcare delivery are a novel concept and is rapidly gaining ground in all fields of medicine. The modes of e-communications such as e-mail, short message service (SMS), multimedia messaging service (MMS) and WhatsApp in palliative care provides a means for quick tele-consultation, information sharing, cuts the waiting time and facilitates initiation of the treatment at the earliest. It also forms a means of communication with local general practitioner and local health care provider such that continuity of the care is maintained. It also minimizes needless transport of the patient to hospital, prevents needless hospitalization and investigations and minimizes cost and logistics involved in the care process. The two case studies provided highlights the use of smartphone application like WhatsApp in palliative care practice and demonstrates its utility.

  2. Impact of initial shunt type on cardiac size and function in children with single right ventricle anomalies before the Fontan procedure: the single ventricle reconstruction extension trial.

    Science.gov (United States)

    Frommelt, Peter C; Gerstenberger, Eric; Cnota, James F; Cohen, Meryl S; Gorentz, Jessica; Hill, Kevin D; John, J Blaine; Levine, Jami C; Lu, Jimmy; Mahle, William T; McCandless, Rachel T; Mertens, Luc; Pearson, Gail D; Spencer, Carolyn; Thacker, Deepika; Williams, Ismee A; Wong, Pierre C; Newburger, Jane W

    2014-11-11

    In children with single right ventricular (RV) anomalies, changes in RV size and function may be influenced by shunt type chosen at the time of the Norwood procedure. The study sought to identify shunt-related differences in echocardiographic findings at 14 months and ≤6 months pre-Fontan in survivors of the Norwood procedure. We compared 2-dimensional and Doppler echocardiographic indices of RV size and function, neo-aortic and tricuspid valve annulus dimensions and function, and aortic size and patency at 14.1 ± 1.2 months and 33.6 ± 9.6 months in subjects randomized to a Norwood procedure using either the modified Blalock-Taussig shunt (MBTS) or right ventricle to pulmonary artery shunt (RVPAS). Acceptable echocardiograms were available at both time points in 240 subjects (114 MBTS, 126 RVPAS). At 14 months, all indices were similar between shunt groups. From the 14-month to pre-Fontan echocardiogram, the MBTS group had stable indexed RV volumes and ejection fraction, while the RVPAS group had increased RV end-systolic volume (p = 0.004) and decreased right ventricular ejection fraction (RVEF) (p = 0.004). From 14 months to pre-Fontan, the treatment groups were similar with respect to decline in indexed neo-aortic valve area, >mild neo-aortic valve regurgitation (rights reserved.

  3. Palliative Care: Opportunities for Nursing

    OpenAIRE

    Ayda Gan Nambayan

    2018-01-01

    Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a curriculum and distance learning developer for www.Cure4Kids.org, the educational website of the International Outreach Program of St. Jude Children's Research Hospital in Memphis, TN. In 2002, she retired from a faculty position from the University of...

  4. Music Therapy in Palliative Care.

    Science.gov (United States)

    Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J

    2015-11-13

    Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.

  5. Palliative care for dementia patients.

    Science.gov (United States)

    Hirot, France

    2016-12-01

    Dementia is a life-limiting disease without curative treatments but the data suggest that advanced dementia is not viewed as a terminal diagnosis by physicians. Although symptoms of dementia and cancer patients are similar, palliative care is less frequently proposed for dementia patients. However, professionals and family members of demented patients strongly favor comfort care for end-stage dementia. To improve the patients' relief near the end of life, advance care planning with patients and their proxies should be encouraged. It should start as soon as possible so that the patient can still be actively involved and his preferences, values, needs and beliefs elicited. Written advance directives or enrollment in hospice care are associated with quality of dying. Yet caregivers are sometimes concerned about applying palliative care too early or that advance plans would be invalidated if relatives or patients changed their mind. Therefore, general practitioners and palliative care specialists need to better collaborate to provide greater information and improve comfort and quality of life of dementia patients.

  6. Responses to assisted suicide requests: an interview study with Swiss palliative care physicians.

    Science.gov (United States)

    Gamondi, Claudia; Borasio, Gian Domenico; Oliver, Pam; Preston, Nancy; Payne, Sheila

    2017-08-11

    Assisted suicide in Switzerland is mainly performed by right-to-die societies. Medical involvement is limited to the prescription of the drug and certification of eligibility. Palliative care has traditionally been perceived as generally opposed to assisted suicide, but little is known about palliative care physicians' involvement in assisted suicide practices. This paper aims to describe their perspectives and involvement in assisted suicide practices. A qualitative interview study was conducted with 23 palliative care physicians across Switzerland. Thematic analysis was used to interpret data. Swiss palliative care physicians regularly receive assisted suicide requests while none reported having received specific training in managing these requests. Participants reported being involved in assisted suicide decision making most were not willing to prescribe the lethal drug. After advising patients of the limits on their involvement in assisted suicide, the majority explored the origins of the patient's request and offered alternatives. Many participants struggled to reconcile their understanding of palliative care principles with patients' wishes to exercise their autonomy. The majority of participants had no direct contact with right-to-die societies, many desired better collaboration. A desire was voiced for a more structured debate on assisted suicide availability in hospitals and clearer legal and institutional frameworks. The Swiss model of assisted suicide gives palliative care physicians opportunities to develop roles which are compatible with each practitioner's values, but may not correspond to patients' expectations. Specific education for all palliative care professionals and more structured ways to manage communication about assisted suicide are warranted. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  7. Patients in palliative care-Development of a predictive model for anxiety using routine data.

    Science.gov (United States)

    Hofmann, Sonja; Hess, Stephanie; Klein, Carsten; Lindena, Gabriele; Radbruch, Lukas; Ostgathe, Christoph

    2017-01-01

    Anxiety is one of the most common psychological symptoms in patients in a palliative care situation. This study aims to develop a predictive model for anxiety using data from the standard documentation routine. Data sets of palliative care patients collected by the German quality management benchmarking system called Hospice and Palliative Care Evaluation (HOPE) from 2007 to 2011 were randomly divided into a training set containing two-thirds of the data and a test set with the remaining one-third. We dichotomized anxiety levels, proxy rated by medical staff using the validated HOPE Symptom and Problem Checklist, into two groups with no or mild anxiety versus moderate or severe anxiety. Using the training set, a multivariable logistic regression model was developed by backward stepwise selection. Predictive accuracy was evaluated by the area under the receiver operating characteristic curve (AUC) based on the test set. An analysis of 9924 data sets suggests a predictive model for anxiety in patients receiving palliative care which contains gender, age, ECOG, living situation, pain, nausea, dyspnea, loss of appetite, tiredness, need for assistance with activities of daily living, problems with organization of care, medication with sedatives/anxiolytics, antidepressants, antihypertensive drugs, laxatives, and antibiotics. It results in a fair predictive value (AUC = 0.72). Routinely collected data providing individual-, disease- and therapy-related information contain valuable information that is useful for the prediction of anxiety risks in patients receiving palliative care. These findings could thus be advantageous for providing appropriate support for patients in palliative care settings and should receive special attention in future research.

  8. Palliative care provision for patients with chronic obstructive pulmonary disease

    Directory of Open Access Journals (Sweden)

    Yohannes Abebaw

    2007-04-01

    Full Text Available Abstract Chronic obstructive pulmonary disease (COPD is a major cause of disability, morbidity and mortality in old age. Patients with advanced stage COPD are most likely to be admitted three to four times per year with acute exacerbations of COPD (AECOPD which are costly to manage. The adverse events of AECOPD are associated with poor quality of life, severe physical disability, loneliness, and depression and anxiety symptoms. Currently there is a lack of palliative care provision for patients with advanced stage COPD compared with cancer patients despite having poor prognosis, intolerable dyspnoea, lower levels of self efficacy, greater disability, poor quality of life and higher levels of anxiety and depression. These symptoms affect patients' quality of life and can be a source of concern for family and carers as most patients are likely to be housebound and may be in need of continuous support and care. Evidence of palliative care provision for cancer patients indicate that it improves quality of life and reduces health care costs. The reasons why COPD patients do not receive palliative care are complex. This partly may relate to prognostic accuracy of patients' survival which poses a challenge for healthcare professionals, including general practitioners for patients with advanced stage COPD, as they are less likely to engage in end-of-life care planning in contrast with terminal disease like cancer. Furthermore there is a lack of resources which constraints for the wider availability of the palliative care programmes in the health care system. Potential barriers may include unwillingness of patients to discuss advance care planning and end-of-life care with their general practitioners, lack of time, increased workload, and fear of uncertainty of the information to provide about the prognosis of the disease and also lack of appropriate tools to guide general practitioners when to refer patients for palliative care. COPD is a chronic

  9. Palliative care provision for patients with chronic obstructive pulmonary disease.

    Science.gov (United States)

    Yohannes, Abebaw Mengistu

    2007-04-03

    Chronic obstructive pulmonary disease (COPD) is a major cause of disability, morbidity and mortality in old age. Patients with advanced stage COPD are most likely to be admitted three to four times per year with acute exacerbations of COPD (AECOPD) which are costly to manage. The adverse events of AECOPD are associated with poor quality of life, severe physical disability, loneliness, and depression and anxiety symptoms. Currently there is a lack of palliative care provision for patients with advanced stage COPD compared with cancer patients despite having poor prognosis, intolerable dyspnoea, lower levels of self efficacy, greater disability, poor quality of life and higher levels of anxiety and depression. These symptoms affect patients' quality of life and can be a source of concern for family and carers as most patients are likely to be housebound and may be in need of continuous support and care. Evidence of palliative care provision for cancer patients indicate that it improves quality of life and reduces health care costs. The reasons why COPD patients do not receive palliative care are complex. This partly may relate to prognostic accuracy of patients' survival which poses a challenge for healthcare professionals, including general practitioners for patients with advanced stage COPD, as they are less likely to engage in end-of-life care planning in contrast with terminal disease like cancer. Furthermore there is a lack of resources which constraints for the wider availability of the palliative care programmes in the health care system. Potential barriers may include unwillingness of patients to discuss advance care planning and end-of-life care with their general practitioners, lack of time, increased workload, and fear of uncertainty of the information to provide about the prognosis of the disease and also lack of appropriate tools to guide general practitioners when to refer patients for palliative care. COPD is a chronic incurable disease; those in an

  10. Age and Gender Moderate the Impact of Early Palliative Care in Metastatic Non-Small Cell Lung Cancer.

    Science.gov (United States)

    Nipp, Ryan D; Greer, Joseph A; El-Jawahri, Areej; Traeger, Lara; Gallagher, Emily R; Park, Elyse R; Jackson, Vicki A; Pirl, William F; Temel, Jennifer S

    2016-01-01

    Studies demonstrate that early palliative care (EPC) improves advanced cancer patients' quality of life (QOL) and mood. However, it remains unclear whether the role of palliative care differs based upon patients' demographic characteristics. We explored whether age and gender moderate the improvements in QOL and mood seen with EPC. We performed a secondary analysis of data from a randomized controlled trial of patients with metastatic non-small cell lung cancer. Patients received either EPC integrated with oncology care or oncology care alone. We assessed the degree to which QOL (Trial Outcome Index [TOI]) and mood (Hospital Anxiety and Depression Scale [HADS] and Patient Health Questionnaire 9 [PHQ-9]) outcomes at week 12 varied by patient age (early palliative care improves patients' quality of life and mood differentially based on their age and gender. Specifically, males and younger patients receiving early palliative care experienced better quality of life and mood than those receiving oncology care alone. Conversely, females and older patients did not experience this treatment effect. Thus, palliative care interventions may need to be tailored to patients' age- and gender-specific care needs. Studying how patients' demographic characteristics affect their experience with palliative care will enable the development of interventions targeted to the distinct supportive care needs of patients with cancer. ©AlphaMed Press.

  11. Palliative sedation versus euthanasia: an ethical assessment.

    Science.gov (United States)

    ten Have, Henk; Welie, Jos V M

    2014-01-01

    The aim of this article was to review the ethical debate concerning palliative sedation. Although recent guidelines articulate the differences between palliative sedation and euthanasia, the ethical controversies remain. The dominant view is that euthanasia and palliative sedation are morally distinct practices. However, ambiguous moral experiences and considerable practice variation call this view into question. When heterogeneous sedative practices are all labeled as palliative sedation, there is the risk that palliative sedation is expanded to include practices that are actually intended to bring about the patients' death. This troublesome expansion is fostered by an expansive use of the concept of intention such that this decisive ethical concept is no longer restricted to signify the aim in guiding the action. In this article, it is argued that intention should be used in a restricted way. The significance of intention is related to other ethical parameters to demarcate the practice of palliative sedation: terminality, refractory symptoms, proportionality, and separation from other end-of-life decisions. These additional parameters, although not without ethical and practical problems, together formulate a framework to ethically distinguish a more narrowly defined practice of palliative sedation from practices that are tantamount to euthanasia. Finally, the article raises the question as to what impact palliative sedation might have on the practice of palliative care itself. The increasing interest in palliative sedation may reemphasize characteristics of health care that initially encouraged the emergence of palliative care in the first place: the focus on therapy rather than care, the physical dimension rather than the whole person, the individual rather than the community, and the primacy of intervention rather than receptiveness and presence. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  12. A comprehensive picture of palliative care at home from the people involved.

    Science.gov (United States)

    Appelin, Gunilla; Brobäck, Gunilla; Berterö, Carina

    2005-12-01

    The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home? The findings indicate that the advantages of palliative care at home is; striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation.

  13. Palliative Care Processes Embedded in the ICU Workflow May Reserve Palliative Care Teams for Refractory Cases.

    Science.gov (United States)

    Mun, Eluned; Umbarger, Lillian; Ceria-Ulep, Clementina; Nakatsuka, Craig

    2018-01-01

    Palliative Care Teams have been shown to be instrumental in the early identification of multiple aspects of advanced care planning. Despite an increased number of services to meet the rising consultation demand, it is conceivable that the numbers of palliative care consultations generated from an ICU alone could become overwhelming for an existing palliative care team. Improve end-of-life care in the ICU by incorporating basic palliative care processes into the daily routine ICU workflow, thereby reserving the palliative care team for refractory situations. A structured, palliative care, quality-improvement program was implemented and evaluated in the ICU at Kaiser Permanente Medical Center in Hawaii. This included selecting trigger criteria, a care model, forming guidelines, and developing evaluation criteria. These included the early identification of the multiple features of advanced care planning, numbers of proactive ICU and palliative care family meetings, and changes in code status and treatment upon completion of either meeting. Early identification of Goals-of-Care, advance directives, and code status by the ICU staff led to a proactive ICU family meeting with resultant increases in changes in code status and treatment. The numbers of palliative care consultations also rose, but not significantly. Palliative care processes could be incorporated into a daily ICU workflow allowing for integration of aspects of advanced care planning to be identified in a systematic and proactive manner. This reserved the palliative care team for situations when palliative care efforts performed by the ICU staff were ineffective.

  14. Integrating palliative care in oncology: the oncologist as a primary palliative care provider.

    Science.gov (United States)

    Rangachari, Deepa; Smith, Thomas J

    2013-01-01

    The provision of comprehensive cancer care in an increasingly complex landscape necessitates that oncology providers familiarize themselves with the application of palliative care. Palliative care is a learnable skill. Recent endeavors in this arena have demonstrated that providing palliative care is part and parcel with providing compassionate and high-quality cancer care, specifically as it pertains to physical and emotional outcomes for patients and their caregivers alike. The basic tenets of providing palliative care emphasize: frequent and honest communication, routine and systematic symptom assessment, integration of spiritual assessments, and early integration of specialized hospice and palliative care resources as a patient's circumstances evolve. This article will endeavor to review and synthesize recent developments in the palliative care literature, specifically as they pertain to the oncologist as a primary palliative care provider.

  15. A new international framework for palliative care.

    Science.gov (United States)

    Ahmedzai, S H; Costa, A; Blengini, C; Bosch, A; Sanz-Ortiz, J; Ventafridda, V; Verhagen, S C

    2004-10-01

    In spite of recent advances in anti-cancer treatments, most adult cancer patients still ultimately die from their disease. There should therefore be free access to palliative care around the clock and seven days a week, for all cancer patients, as a fundamental human right. At present, the implementation of palliative care and patients' access to it are inconsistent across Europe and many other parts of the world. The World Health Organisation (WHO) made an important advance in 1986 by first defining palliative care and, then updating this definition in 2002. However, this definition could benefit from further refinement in order to reflect the increasing multi-professional specialisation in this subject, and to recognise the different models for delivering this type of care. We recommend that palliative care should be defined as follows: Palliative care is the person-centred attention to symptoms, psychological, social and existential distress in patients with limited prognosis, in order to optimise the quality of life of patients and their families or close friends. Based on this definition, we propose two further types of palliative care which reflect the reality of how palliative care is actually delivered: Basic palliative care is the standard of palliative care which should be provided by all healthcare professionals, in primary or secondary care, within their normal duties to patients with life-limiting disease. Specialised palliative care is a higher standard of palliative care provided at the expert level, by a trained multi-professional team, who must continually update their skills and knowledge, in order to manage persisting and more complex problems and to provide specialised educational and practical resources to other non-specialised members of the primary or secondary care teams. If a patient has difficult symptoms which cannot be controlled by his/her current healthcare team, he/she has a right to be referred, and the current healthcare provider

  16. Does the use of specialist palliative care services modify the effect of socioeconomic status on place of death? A systematic review.

    Science.gov (United States)

    Chen, Hong; Nicolson, Donald J; Macleod, Una; Allgar, Victoria; Dalgliesh, Christopher; Johnson, Miriam

    2016-05-01

    Cancer patients in lower socioeconomic groups are significantly less likely to die at home and experience more barriers to access to palliative care. It is unclear whether receiving palliative care may mediate the effect of socioeconomic status on place of death. This review examines whether and how use of specialist palliative care may modify the effect of socioeconomic status on place of death. A systematic review was conducted. Eligible papers were selected and the quality appraised by two independent reviewers. Data were synthesised using a narrative approach. MEDLINE, Embase, CINAHL, PsycINFO and Web of Knowledge were searched (1997-2013). Bibliographies were scanned and experts contacted. Papers were included if they reported the effect of both socioeconomic status and use of specialist palliative care on place of death for adult cancer patients. Nine studies were included. All study subjects had received specialist palliative care. With regard to place of death, socioeconomic status was found to have (1) no effect in seven studies and (2) an effect in one study. Furthermore, one study found that the effect of socioeconomic status on place of death was only significant when patients received standard specialist palliative care. When patients received more intense care adapted to their needs, the effect of socioeconomic status on place of death was no longer seen. There is some evidence to suggest that use of specialist palliative care may modify the effect of socioeconomic status on place of death. © The Author(s) 2015.

  17. Distress Due to Prognostic Uncertainty in Palliative Care: Frequency, Distribution, and Outcomes among Hospitalized Patients with Advanced Cancer.

    Science.gov (United States)

    Gramling, Robert; Stanek, Susan; Han, Paul K J; Duberstein, Paul; Quill, Tim E; Temel, Jennifer S; Alexander, Stewart C; Anderson, Wendy G; Ladwig, Susan; Norton, Sally A

    2017-09-18

    Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative care consultation, yet we know little about its impact on quality of life (QOL). We describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care consultation. We evaluate the association between this type of distress and overall QOL before and after palliative care consultation. Observational cohort study. Hospitalized patients with advanced cancer who receive a palliative care consultation at two geographically distant academic medical centers. At the time of enrollment, before palliative care consultation, we asked participants: "Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness?" (Not at all/Slightly/Moderately/Quite a Bit/Extremely). We defined responses of "Quite a bit" and "Extremely" to be indicative of substantial distress. Two hundred thirty-six participants completed the baseline assessment. Seventy-seven percent reported being at least moderately bothered by prognostic uncertainty and half reported substantial distress. Compared with others, those who were distressed by prognostic uncertainty (118/236) reported poorer overall QOL before palliative care consultation (mean QOL 3.8 out of 10 vs. 5.3 out of 10, p = palliative care consultation. Distress from prognostic uncertainty is associated with lower levels of preconsultation QOL and with greater pre-post consultation improvement in the QOL.

  18. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... views 5:27 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 24,322 views 5:39 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: 10:35. ...

  19. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... One Couple's Story of Living While Dying - Duration: 2:20. HPCancer 9,964 views 2:20 Palliative Care & Me: Pat's story - Duration: 6:37. NYGHNews 2,079 views 6:37 Understanding Palliative Care - Duration: ...

  20. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 61,267 views 5:21 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: 22:27. HammondCare 21,098 views 22:27 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont ...

  1. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 34 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before Death 14,141 views 5:27 Phoebe's Cancer Story - Duration: 7:46. Family ... Love and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 19,558 ...

  2. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 11,437 views 10:35 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: 22:27. HammondCare 20,280 views 22:27 Teen ... views 5:21 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont ...

  3. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 4:24. RileyKidsVideo 162,780 views 4:24 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before Death 16,219 views 5:27 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: ...

  4. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 5:21 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: ... 098 views 22:27 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont Hospital for Children - ...

  5. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Meriter 99,879 views 13:34 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before Death 14,708 views 5:27 The Human Connection ... 37. NYGHNews 2,128 views 6:37 Last Days: HammondCare's Palliative Care Home Support program featured on ...

  6. Primary Palliative Care Education: A Pilot Survey.

    Science.gov (United States)

    Carroll, Thomas; Weisbrod, Neal; O'Connor, Alec; Quill, Timothy

    2017-01-01

    The demand for palliative services is outpacing the availability of specialist palliative care clinicians. One strategy to fill this gap is to improve "primary palliative care" skills and knowledge of all clinicians who care for seriously ill patients. Previous educational efforts have shown mixed results, and one possible explanation is unrecognized discordance of educational goals between those offering education and potential primary palliative care learners. The article describes the results and feasibility of a needs assessment survey comparing interest in palliative care education topics and settings among both palliative care specialists (PCS) and nonpalliative care specialists (NPCS). This is the first attempt to measure the perceived importance of primary palliative care topics and preferences about learning settings from the perspectives of both NPCS and PCS. The results suggest substantial areas of both concordant and discordant opinions with respect to educational topics and learning settings. Such data are essential to guide primary palliative care educational efforts. Future work will be needed to determine whether these results are consistent across diverse health systems and what variables influence educational preferences.

  7. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Little Stars 12,195 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,258 views 3:29 Pediatric Palliative ... views 3:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,474 views 5: ...

  8. Frequently Asked Questions (Palliative Care: Conversations Matter)

    Science.gov (United States)

    ... chaplains, and counselors. Support may involve art and music therapists, home health aides, nutritionists, and respite care providers. How does palliative care help children and their families? A child’s serious illness affects the entire family. Pediatric palliative care can support ...

  9. PALLIATIVE CARE IN ROMANIA : NEEDS AND RIGHTS

    NARCIS (Netherlands)

    van den Heuvel, Wim J. A.; Olaroiu, Marinela

    2008-01-01

    Palliative care is directed to maintenance of quality of life and to prevent and to relief suffering of those with a life-threatening disease. Palliative care does not only concern the patient, but also the quality of life of family members and it deals with physical symptoms as well as with

  10. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Queue __count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  11. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... This vignette shares the story of Rachel—a pediatric neuroblastoma patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category Science & Technology ... Up next The Keeney Family discuss pediatric palliative care - Duration: 12:07. Hospice of the ...

  12. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 4:24. RileyKidsVideo 172,818 views 4:24 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before Death 16,437 views 5:27 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: ...

  13. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 10:35 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: ... 259 views 4:24 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont Hospital for Children - ...

  14. Improving aspects of palliative care for children

    NARCIS (Netherlands)

    Jagt, C.T.

    2017-01-01

    This thesis is about improving aspects of palliative care for children, and covers three different areas of quality of care. First of all, palliative care should be anticipating. To be able to deliver this anticipating care, caregivers should know what to expect. The first two chapters of the thesis

  15. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 11,437 views 10:35 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: ... 24. RileyKidsVideo 102,259 views 4:24 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont Hospital for Children - ...

  16. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 34 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before Death 14,876 views 5:27 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 21,169 ...

  17. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Little Stars 12,195 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,256 views 3:29 Pediatric Palliative ... views 3:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,410 views 5: ...

  18. Parenting and palliative care in paediatric oncology

    NARCIS (Netherlands)

    Kars, M.C.

    2012-01-01

    Although many children with cancer can be cured, approximately 25 % will die of their disease. These deaths are usually anticipated and preceded by a period of palliative care focused on the end-of-life, usually referred to as the palliative phase. The PRESENCE-study was aimed at a better

  19. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 251 views 10:35 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: 22:27. HammondCare 19,064 views 22:27 The Ugly Truth of Pediatric ... views 4:24 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont Hospital ...

  20. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 11,251 views 10:35 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: 22:27. HammondCare 19,064 views 22:27 The Ugly Truth of Pediatric ... views 4:24 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont Hospital ...

  1. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... the Western Reserve 10,324 views 12:07 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 130,784 views 13:34 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before ...

  2. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 10:35 Last Days: HammondCare's Palliative Care Home Support program featured on ABC NSW 7.30 - Duration: ... 202 views 4:24 Pediatric Palliative Care and Support at Nemours/Alfred I. duPont Hospital for Children - ...

  3. [Palliative therapy concepts in intensive care medicine].

    Science.gov (United States)

    Schuster, M; Ferner, M; Bodenstein, M; Laufenberg-Feldmann, R

    2017-04-01

    Involvement of palliative care is so far not common practice for critically ill patients on surgical intensive care units (ICUs) in Germany. The objectives of palliative care concepts are improvement of patient quality of life by relief of disease-related symptoms using an interdisciplinary approach and support of patients and their relatives considering their current physical, psychological, social and spiritual needs. The need for palliative care can be identified via defined screening criteria. Integration of palliative care can either be realized using a consultative model which focusses on involvement of palliative care consultants or an integrative model which embeds palliative care principles into the routine daily practice by the ICU team. Early integration of palliative care in terms of advance care planning (ACP) can lead to an increase in goals of care discussions and quality of life as well as a decrease of mortality and length of stay on the ICU. Moreover, stress reactions of relatives and ICU staff can be reduced and higher satisfaction with therapy can be achieved. The core of goal of care discussions is professional and well-structured communication between patients, relatives and staff. Consideration of palliative care principles by model-based integration into ICU practice can improve complex intensive care courses of disease in a productive but dignified way without neglecting curative attempts.

  4. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 60,403 views 5:21 Faces Of Palliative Care - Duration: 45:21. PHCMediaServices 142,437 views 45:21 Understanding Palliative ...

  5. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... PHCMediaServices 145,518 views 45:21 Palliative Care: One Couple's Story of Living While Dying - Duration: 2: ... Pediatric Palliative Care- Tara - Duration: 3:37. sharingwisdomppc 1,667 views 3:37 Loading more suggestions... Show ...

  6. Early outcome of children with complex atrial isomerism undergoing uni-ventricular cardiac palliation.

    Science.gov (United States)

    Santhanam, Giridhar V; Najm, Hani K; Duplessis, Johannes P; Abu-Sulaiman, Riyadh M; Kabbani, Mohamed S

    2007-12-01

    To review the postoperative intensive care unit (ICU) course and early outcome of children with complex atrial isomeric hearts undergoing cardiac surgery for uni-ventricular heart repair. A retrospective review and analysis of ICU course of pediatric patients with atrial isomerism admitted from January 2000 to December 2004 in King Abdul-Aziz Medical City, Riyadh, Kingdom of Saudi Arabia, who underwent uni-ventricular repair. During the study period, 18 (n=18) patients were identified to have complex congenital heart disease (CHD) associated with atrial isomerism. They were in the form of right atrial isomerism (n=12), and left atrial isomerism (n=6). Eight patients did not meet the inclusion criteria of the study and were excluded. Ten of the 18 patients fulfilled the study criteria and underwent first stage uni-ventricular heart repair with 8 survivals (80%). Three of the 8 operated survival cases underwent second stage repair with 2 survivals (66%) and one patient completed Fontan surgery with a good outcome. An uneventful ICU course was noted in 3 of 10 operated patients (30%). Complications were noted in (40%) of cases including sepsis (n=4), tracheostomy (n=1), prolonged mechanical ventilation >7days (n=2). Over 50% of the operated patients required prolonged ICU stay (>2 weeks). Atrial isomerism is frequently associated with complex cardiac defects that often present in the neonatal stage and requires multiple staged cardiac surgeries. The surgical repair and peri-operative management of this group of patients can be difficult, challenging, and with potential risk of significant morbidity or mortality. In our setting, we found the outcome of children with atrial isomerism undergoing uni-ventricular palliation comparable to the literature.

  7. Diagnostic radiology in paediatric palliative care

    Energy Technology Data Exchange (ETDEWEB)

    Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran [Great Ormond Street Hospital, Radiology Department, London (United Kingdom)

    2014-01-15

    Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options. (orig.)

  8. Palliative care nursing interventions in Thailand.

    Science.gov (United States)

    Doorenbos, Ardith Z; Juntasopeepun, Phanida; Eaton, Linda H; Rue, Tessa; Hong, Elizabeth; Coenen, Amy

    2013-10-01

    This study aimed to describe the nursing interventions that nurses in Thailand identify as most important in promoting dignified dying. This study used a cross-sectional descriptive design. A total of 247 Thai nurses completed a paper-and-pencil survey written in Thai. The survey included both demographic questions and palliative care interventions, listed with summative rating scales, from the International Classification for Nursing Practice (ICNP) catalogue Palliative Care for Dignified Dying. Descriptive statistics were used to analyze the data. The five most important nursing interventions to promote dignified dying, ranked by average importance rating, were (a) maintain dignity and privacy, (b) establish trust, (c) manage pain, (d) establish rapport, and (e) manage dyspnea. This research identified the palliative care nursing interventions considered most important by nurses in Thailand to promote dignified dying. The ICNP catalogue Palliative Care for Dignified Dying can be used for planning and managing palliative nursing care in Thailand.

  9. Partnerships between pediatric palliative care and psychiatry.

    Science.gov (United States)

    Knapp, Caprice; Madden, Vanessa; Button, Daniel; Brown, Rebecca; Hastie, Barbara

    2011-08-01

    Children with life-threatening illnesses and their families may face physical, emotional, psychosocial, and spiritual challenges throughout the children's course of illness. Pediatric palliative care is designed to meet such challenges. Given the psychosocial and emotional needs of children and their families it is clear that psychiatrists can, and do, play a role in delivering pediatric palliative care. In this article the partnership between pediatric palliative care and psychiatry is explored. The authors present an overview of pediatric palliative care followed by a summary of some of the roles for psychiatry. Two innovative pediatric palliative care programs that psychiatrists may or may not be aware of are described. Finally, some challenges that are faced in further developing this partnership and suggestions for future research are discussed. Copyright © 2011 Elsevier Inc. All rights reserved.

  10. [Multiprofessional team working in palliative medicine].

    Science.gov (United States)

    Osaka, Iwao

    2013-04-01

    Now, more than ever, palliative medicine has been gaining recognition for its essential role in cancer treatment. Since its beginning, it has emphasized the importance of collaboration among multidisciplinary professionals, valuing a comprehensive and holistic philosophy, addressing a wide range of hopes and suffering that patients and families experience. There are three models (approaches) for the medical teams: multidisciplinary, interdisciplinary, and transdisciplinary. Palliative care teams often choose the interdisciplinary team model, and the teams in the palliative care units may often choose the transdisciplinary team model. Recently, accumulating research has shown the clinical benefits of the interdisciplinary/transdisciplinary approach in palliative care settings. Clarifying appropriate functions and ideal features of physicians in the health care team, and enforcing the suitable team approach will contribute to improve the quality of whole medical practice beyond the framework of "palliative medicine".

  11. Paediatric palliative care : recommendations for treatment of symptoms in the Netherlands

    NARCIS (Netherlands)

    Knops, Rutger R. G.; Kremer, Leontien C. M.; Verhagen, A. A. Eduard

    2015-01-01

    Background: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high

  12. Paediatric palliative care : recommendations for treatment of symptoms in the Netherlands

    NARCIS (Netherlands)

    Knops, Rutger R G; Kremer, Leontien C M; Verhagen, A A Eduard

    2015-01-01

    BACKGROUND: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high

  13. Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands

    NARCIS (Netherlands)

    Knops, Rutger R. G.; Kremer, Leontien C. M.; Verhagen, A. A. Eduard; Beek, L.; Fock, J. M.; Hartvelt-Faber, G.; Mensink, M. O.; Michiels, E. C. M.; Schouten-van Meeteren, A. Y. N.; Uitdehaag, M. J.; Venmans, L. M. A. J.; Verhagen, A. A. E.; de Weerd, W.

    2015-01-01

    Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality

  14. Palliative care services for Indian migrants in Australia: Experiences of the family of terminally Ill patients

    Directory of Open Access Journals (Sweden)

    Sujatha Shanmugasundaram

    2009-01-01

    Full Text Available Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups.

  15. Relatives' perceived quality of palliative care: comparisons between care settings in which patients die.

    Science.gov (United States)

    de Boer, Dolf; Hofstede, Jolien M; de Veer, Anke J E; Raijmakers, Natasja J H; Francke, Anneke L

    2017-08-16

    Dying in the preferred setting is an indicator of good palliative care quality. Most people prefer to die at home. But does the quality of care as perceived by their relatives vary depending on the care setting that is the place of death? The aim is to compare (from the relatives perspective) whether there are perceived differences in the quality of palliative care between the settings in which people die. Multivariate linear regression analyses have been carried out using an existing dataset containing information collected using the relatives' version of the Consumer Quality Index (CQ-index) Palliative Care. The dataset includes 1368 relatives of patients with a wide variety of conditions who died in various locations: at home, in hospital, in residential care for the elderly, a hospice, palliative care unit or in another institution (e.g. institutions for people with intellectual disabilities or mental healthcare institutions). The relatives were the first contacts (family members or other people close to the patient) and they received the survey between 6 weeks and 6 months after the bereavement. Based on the raw data, differences between locations in terms of the perceived quality of care initially appeared inconsistent. The multivariate regression analyses however showed that relatives of people who died at home were generally the most positive about the palliative care that the patient and they themselves received when