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Sample records for receiving fontan palliation

  1. Oral budesonide treatment for protein-losing enteropathy in Fontan-palliated patients.

    Science.gov (United States)

    Schumacher, Kurt R; Cools, Michael; Goldstein, Bryan H; Ioffe-Dahan, Viktoriya; King, Karen; Gaffney, Diane; Russell, Mark W

    2011-10-01

    Protein-losing enteropathy (PLE) is a rare complication of Fontan palliation associated with significant morbidity and mortality. It is characterized by the loss of serum proteins into the intestinal lumen, and its pathophysiology likely involves enteral inflammation. Budesonide, an oral steroid, is an attractive treatment option because of its potent enteral activity and minimal systemic side effects. A single-center, retrospective review of Fontan-palliated PLE patients treated with oral budesonide for 6 months or longer was performed. The patient characteristics reviewed were demographics, anatomic diagnosis, budesonide treatment (dose and duration), other medications and therapeutic interventions, hospitalizations, serum albumin levels, medical complications, and patient status at the time of follow-up assessment. The study enrolled 10 patients representing 228 patient-months of on-therapy follow-up evaluation. Serum albumin levels increased after initiation of budesonide for 90% of the patients, and clinical evidence of fluid overload improved for 60% of them. Symptomatic improvement was reported in 80% of the cases. During the treatment period, 50% of the patients met the primary end point of death or cardiac transplantation. In this series of PLE patients, oral budesonide therapy was associated with significant symptomatic improvement and sustained increases in serum albumin. However, budesonide therapy may not alter the long-term outcome for patients with advanced PLE.

  2. Endothelin receptor antagonism in single ventricle physiology with fontan palliation: A systematic review and meta-analysis

    Directory of Open Access Journals (Sweden)

    Gwendolyn Derk

    2015-04-01

    Conclusions: Bosentan was found to be a safe and well tolerated endothelin receptor antagonist in Fontan patients over 3–6 months of therapy. Bosentan use was associated with improved functional capacity. Future studies with larger sample size and longer duration are warranted to examine the long-term safety and efficacy of endothelin blockade in Fontan physiology.

  3. Experiences of Family Members of Dying Patients Receiving Palliative Sedation.

    Science.gov (United States)

    Tursunov, Olga; Cherny, Nathan I; Ganz, Freda DeKeyser

    2016-11-01

    To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.
. Descriptive comparative study.
. Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel.
. A convenience sample of 34 family members of dying patients receiving palliative sedation. 
. A modified version of a questionnaire describing experiences of family members with palliative sedation was administered during palliative sedation and one to four months after the patient died. Descriptive statistics were used to describe the results of the questionnaire, and appropriate statistical analyses were conducted for comparisons over time.
. Experiences of family members and time.
. Most relatives were satisfied with the sedation and staff support. Palliative sedation was experienced as an ethical way to relieve suffering. However, one-third felt that it shortened the patient's life. An explanation of the treatment was given less than half of the time and was usually given on the same day treatment was started. This explanation was given by physicians and nurses. Many felt that they were not ready for changes in the patient's condition and wanted increased opportunities to discuss the treatment with oncology care providers. No statistically significant differences in experiences were found over time. 
. Relatives' experiences of palliative sedation were generally positive and stable over time. Important experiences included timing of the initiation of sedation, timing and quality of explanations, and communication.
. Nurses should attempt to initiate discussions of the possible role of sedation in the event of refractory symptoms and follow through with continued discussions. The management of refractory symptoms at the end of life, the role of sedation, and communication skills associated with decision making related to palliative sedation should be a

  4. Fontan-associated protein-losing enteropathy and plastic bronchitis.

    Science.gov (United States)

    Schumacher, Kurt R; Stringer, Kathleen A; Donohue, Janet E; Yu, Sunkyung; Shaver, Ashley; Caruthers, Regine L; Zikmund-Fisher, Brian J; Fifer, Carlen; Goldberg, Caren; Russell, Mark W

    2015-04-01

    To characterize the medical history, disease progression, and treatment of current-era patients with the rare diseases Fontan-associated protein-losing enteropathy (PLE) and plastic bronchitis. A novel survey that queried demographics, medical details, and treatment information was piloted and placed online via a Facebook portal, allowing social media to power the study. Participation regardless of PLE or plastic bronchitis diagnosis was allowed. Case control analyses compared patients with PLE and plastic bronchitis with uncomplicated control patients receiving the Fontan procedure. The survey was completed by 671 subjects, including 76 with PLE, 46 with plastic bronchitis, and 7 with both. Median PLE diagnosis was 2.5 years post-Fontan. Hospitalization for PLE occurred in 71% with 41% hospitalized ≥ 3 times. Therapy varied significantly. Patients with PLE more commonly had hypoplastic left ventricle (62% vs 44% control; OR 2.81, 95% CI 1.43-5.53), chylothorax (66% vs 41%; OR 2.96, CI 1.65-5.31), and cardiothoracic surgery in addition to staged palliation (17% vs 5%; OR 4.27, CI 1.63-11.20). Median plastic bronchitis diagnosis was 2 years post-Fontan. Hospitalization for plastic bronchitis occurred in 91% with 61% hospitalized ≥ 3 times. Therapy was very diverse. Patients with plastic bronchitis more commonly had chylothorax at any surgery (72% vs 51%; OR 2.47, CI 1.20-5.08) and seasonal allergies (52% vs 36%; OR 1.98, CI 1.01-3.89). Patient-specific factors are associated with diagnoses of PLE or plastic bronchitis. Treatment strategies are diverse without clear patterns. These results provide a foundation upon which to design future therapeutic studies and identify a clear need for forming consensus approaches to treatment. Copyright © 2015 Elsevier Inc. All rights reserved.

  5. Surgical options after Fontan failure

    DEFF Research Database (Denmark)

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

    2016-01-01

    by the European Congenital Heart Surgeons Association among 22 member centres. Outcome of surgery to address failing Fontan was collected in 225 patients among which were patients with Fontan takedown (n=38; 17%), Fontan conversion (n=137; 61%) or HTX (n=50; 22%). RESULTS: The most prevalent indication...... for failing Fontan surgery was arrhythmia (43.6%), but indications differed across the surgical groups (p...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...

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

    International Nuclear Information System (INIS)

    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, 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

  7. Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.

    Science.gov (United States)

    Swetz, Keith M; Freeman, Monica R; AbouEzzeddine, Omar F; Carter, Kari A; Boilson, Barry A; Ottenberg, Abigale L; Park, Soon J; Mueller, Paul S

    2011-06-01

    To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT). We retrospectively reviewed the cases of patients who received DT between January 15, 2009, and January 1, 2010. Of 19 patients identified, 13 (68%) received proactive palliative medicine consultation. Median time of palliative medicine consultation was 1 day before DT implantation (range, 5 days before to 16 days after). Thirteen patients (68%) completed advance directives. The DT implantation team and families reported that preimplantation discussions and goals of care planning made postoperative care more clear and that adverse events were handled more effectively. Currently, palliative medicine involvement in patients receiving DT is viewed as routine by cardiac care specialists. Proactive palliative medicine consultation for patients being considered for or being treated with DT improves advance care planning and thus contributes to better overall care of these patients. Our experience highlights focused advance care planning, thorough exploration of goals of care, and expert symptom management and end-of-life care when appropriate.

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

    Science.gov (United States)

    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.

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

    Science.gov (United States)

    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.

  10. Prescription Pattern of Analgesic Drugs for Patients Receiving Palliative Care in a Teaching Hospital in India.

    Science.gov (United States)

    Menezes, Vishma Hydie; Nair, Shoba N; Soumya, M S; Tarey, S D

    2016-01-01

    Drugs used in the palliative care unit for managing symptoms are major contributors toward the expenditure occurring in palliative care. This study was conducted to understand the prescription pattern of analgesic drugs in the patients who are receiving palliative care in a teaching hospital in India by a retrospective study of case records. Case record based, retrospective, descriptive study was conducted at the Pain and Palliative Care Department of St. John's Medical College Hospital, Bengaluru. Case record files of all patients referred to Pain and Palliative Care Department for the treatment of pain in the year of 2012 were studied. Patients' age, gender, diagnoses, numerical pain rating scale (0-10), drugs prescribed, dosage, frequency, route of administration were recorded. The difference in drug utilization between the genders was done using Chi-square test. Data were collected from 502 patients of which 280 (56%) were males and 222 (44%) were females. Twelve percent of patients had mild pain (1-3), 34% had moderate pain (4-6), and 54% had severe pain (7-10). The most commonly used analgesic drugs were opioids (47%), followed by nonsteroidal anti-inflammatory drugs (36%). The opioids used were tramadol (56%), and morphine (38%). Ninety percent of patients with numerical pain scale more than 6 received morphine. There was no difference in analgesic drug utilization with regards to gender. Prescription pattern differed depending on the severity of pain. Opioids were the most commonly used drugs for pain management. The study shows that prescription pattern in palliative care unit of this hospital was in accordance with WHO pain management guidelines. The study showed the current trend in prescription of analgesic drugs in the teaching hospital where the study was conducted.

  11. The Use of Fecal Calprotectin Levels in the Fontan population.

    Science.gov (United States)

    Miranda, Carlos; Taqatqa, Anas; Chapa-Rodriguez, Adrian; Holton, Jacob P; Awad, Sawsan M

    2018-03-01

    The Fontan procedure was first performed in the seventies as a palliation for patients with single ventricle physiology. A feared complication after a Fontan procedure is the development of protein losing enteropathy (PLE). Systemic inflammation has a negative effect on the intestinal barrier integrity, which has supported the use of steroids in this setting. To the best of our knowledge there are no studies linking intestinal inflammation in patients with PLE after Fontan. The objective of this study was to identify the presence of intestinal inflammation measured by FC in patients with PLE after a Fontan procedure. A cross-sectional analysis was performed examining 23 stool samples from 23 Fontan patients for both Fecal alpha-1-antitrypsin (FA1AT) and FC with and without PLE. The median FC was 21 mcg/gm of stool (IQR: 15.7-241 mcg/gm of stool), and the median FA1AT was 40 mg/dL (IQR: 30-220 mg/dL). The median FC and FA1AT were significantly higher in the PLE group than in the Non-PLE group (p = 0.002 and p PLE, which correlated with the elevated levels of FA1AT. Inversely, levels of FC in Fontan patients without suspected PLE were within the normal range. To our knowledge, this is the first study to demonstrate intestinal inflammation using FC in the setting of PLE within this cohort, and may prove to be useful as a diagnostic tool in its treatment.

  12. Optimizing CT angiography in patients with Fontan physiology: single-center experience of dual-site power injection

    International Nuclear Information System (INIS)

    Sandler, K.L.; Markham, L.W.; Mah, M.L.; Byrum, E.P.; Williams, J.R.

    2014-01-01

    Aim: To identify adult patients with single-ventricle congenital heart disease and Fontan procedure palliation who have been misdiagnosed with or incompletely evaluated for pulmonary embolism. Additionally, this study was designed to demonstrate that simultaneous, dual-injection of contrast medium into an upper and lower extremity vein is superior to single-injection protocols for CT angiography (CTA) of the chest in this population. Materials and methods: Patients included in the study were retrospectively selected from the Adult Congenital Heart Disease (ACHD) database. Search criteria included history of Fontan palliation and available chest CT examination. Patients were evaluated for (1) type of congenital heart disease and prior operations;(2) indication for initial CT evaluation;(3) route of contrast medium administration for the initial CT examination and resulting diagnosis;(4) whether or not anticoagulation therapy was initiated; and (5) final diagnosis and treatment plan. Results: The query of the ACHD database resulted in 28 individuals or patients with Fontan palliation (superior and inferior venae cavae anastomosed to the pulmonary arteries). Of these, 19 patients with Fontan physiology underwent CTA of the pulmonary circulation, and 17 had suboptimal imaging studies. Unfortunately, seven of these 17 patients (41%) were started on anticoagulation therapy due to a diagnosis of pulmonary embolism that was later excluded. Conclusion: Patients with single-ventricle/Fontan physiology are at risk of thromboembolic disease. Therefore, studies evaluating their complex anatomy must be performed with the optimal imaging protocol to ensure diagnostic accuracy, which is best achieved with dual-injection of an upper and lower extremity central vein. - Highlights: • The adult congenital heart disease population is growing. • Many of these patients have single ventricle/Fontan physiology. • Patients with Fontan physiology are at increased risk for

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

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

    2018-04-01

    ABSTRACTBackground: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 [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 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; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 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; CI95% = 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; CI95% = 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 can facilitate the

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

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    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. Effect of race on the timing of the Glenn and Fontan procedures for single-ventricle congenital heart disease.

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    Ingaramo, Oscar A; Khemani, Robinder G; Markovitz, Barry P; Epstein, David

    2012-03-01

    Disparities in health care have been documented between different racial groups in the United States. We hypothesize that there will be racial variance in the timing of the Glenn and Fontan procedures for children with single-ventricle physiology. We performed a retrospective review of a national pediatric intensive care unit database (Virtual PICU Performance System, LLC). Children with hypoplastic left heart syndrome, tricuspid atresia, and common ventricle, admitted from January 2006 to July 2008, were included. Data included race, weight, age, medical length of stay, Paediatric Index of Mortality 2 score, and survival. None. There were 423 patients from 29 hospitals. The study population was 7.6% black, 13.0% Hispanic, 59.8% white, 9.2% "other," and 11.6% had missing racial/ethnic information. Diagnoses included 255 patients with hypoplastic left heart syndrome, 91 with tricuspid atresia, and 77 with common ventricle. The median age for the Glenn procedure (n = 205) was 5.5 months (interquartile range, 4.6-7.0 months) and 39.7 months (interquartile range, 32.4-50.6 months) for the Fontan procedure (n = 218). There was no difference between the median age at the time of the Glenn or Fontan procedures between the different racial/ethnic groups (p = .65 and p = .16, respectively). The medical length of intensive care unit stay for patients receiving the Glenn and Fontan procedures was 3.7 days (interquartile range, 1.9-6.1 days) and 3.7 days (interquartile range, 1.9-6.8 days), respectively. There were no differences in medical length of intensive care unit stay for the Glenn procedure between the different racial/ethnic groups (p = .21). Hispanic patients had a longer medical length of intensive care unit stay (6.3 days; interquartile range, 3.1-9.9 days) than white patients (2.9 days; interquartile range, 1.8-5.3 days) for the Fontan procedure (p = .008). The timing of single-ventricle palliative procedures was not affected by race/ethnicity.

  16. Patients' perceptions of palliative care: adaptation of the Quality from the Patient's Perspective instrument for use in palliative care, and description of patients' perceptions of care received.

    Science.gov (United States)

    Sandsdalen, Tuva; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Wilde-Larsson, Bodil

    2015-11-02

    Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was

  17. 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).

  18. Spiritual well-being among outpatients with cancer receiving concurrent oncologic and palliative care.

    Science.gov (United States)

    Rabow, Michael W; Knish, Sarah J

    2015-04-01

    Spiritual well-being is threatened by cancer, but its correlation with other illness symptoms and the efficacy of palliative care (PC) to ameliorate spiritual suffering are not well understood. We conducted a retrospective study using a convenience sample of oncology patients at a comprehensive cancer center who received concurrent oncologic and palliative care between 2008 and 2011 and completed ESAS, QUAL-E, and Steinhauser Spiritual well-being survey questions was conducted. Descriptive, correlation, and t test statistics. Eight hundred eighty-three patients surveyed had an average age of 65.6 years, with 54.1 % female, 69.3 % white, and 49.3 % married. Half (452, 51.2 %) had metastatic disease. Religious affiliation was reported as Christian by 20.3 %, Catholic by 18.7 %, and "none" by 39.0 %. Baseline spiritual well-being was not significantly correlated with age, gender, race, cancer stage, marital status, insurance provider, or having a religious affiliation. Greater spiritual well-being was correlated with greater quality of life (well-being (spiritual well-being and anxiety, depression, fatigue, and quality of life (R (2) = 0.677). Spiritual well-being improved comparing mean scores immediately prior to initial PC consultation with those at first follow-up (2.89 vs. 3.23 on a 1-5 scale, p = 0.005). Among patients with cancer receiving concurrent oncologic and palliative care, spiritual well-being was not associated with patient age, gender, or race, or disease stage. It was correlated with physical and emotional symptoms. Spiritual well-being scores improved from just prior to the initial PC consultation to just prior to the first PC follow-up visit.

  19. Pediatric Patients Receiving Specialized Palliative Home Care According to German Law: A Prospective Multicenter Cohort Study

    Directory of Open Access Journals (Sweden)

    Silke Nolte-Buchholtz

    2018-05-01

    Full Text Available In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC. It is the aim of this study to describe the demographic and clinical characteristics of children referred to SPPHC and to compare patients with cancer and non-cancer conditions. The prospective multicenter study includes data on 75 children (median age 7.7 years, 50.7% male. The majority had non-cancer conditions (72%. The most common symptoms were cognitive impairment, somatic pain, impairment in communication or swallowing difficulties. Swallowing difficulties, seizures, and spasticity occurred significantly more often in non-cancer patients (p < 0.01. Cancer patients received antiemetics significantly more often (permanent and on demand than non-cancer patients (p < 0.01. Significantly more non-cancer patients had some type of feeding tube (57.3% or received oxygen (33.3% (p < 0.01. Central venous catheters had been fitted in 20% of the patients, mostly in cancer patients (p < 0.001. Tracheostomy tubes (9.3% or ventilation (14.7% were only used in non-cancer patients. In conclusion, patients referred to SPPHC are a diverse cohort with complex conditions including a large range of neurologically originating symptoms. The care of pediatric palliative care patients with cancer is different to the care of non-cancer patients.

  20. "To cherish each day as it comes": a qualitative study of spirituality among persons receiving palliative care.

    Science.gov (United States)

    Asgeirsdottir, Gudlaug Helga; Sigurbjörnsson, Einar; Traustadottir, Rannveig; Sigurdardottir, Valgerdur; Gunnarsdottir, Sigridur; Kelly, Ewan

    2013-05-01

    Spirituality is one of the main aspects of palliative care. The concept is multidimensional and encompasses the existential realm as well as value-based and religious considerations. The aim of this study was to explore spirituality from the perspective of persons receiving palliative care and examine their experience of spirituality and its influence on their lives and well-being. Qualitative interviews were conducted with ten persons receiving palliative care from Palliative Care Services in Iceland. The interviews were tape-recorded, transcribed and analysed. The study is in the field of practical theology and used the theoretical approach of hermeneutical phenomenology. Thematic analysis found that the spiritual dimension was of significance for the participants who understood it as a vital element connected to seeking meaning, purpose and transcendence in life. Religious and non-religious aspects of spirituality were expressed including strong spiritual components of family relationships, the meaning of God/a higher being and spiritual practices which served as a key factor in giving strength, activating inner resources and motivating hope. Nine of the participants expressed their spirituality as faith. Spirituality was experienced broadly as an important dimension of how participants lived with terminal illness. Religious and non-religious characteristics were recognised which reveals the complex nature of the phenomenon. Faith was a significant part of the participants' spirituality indicating the importance of attending to this aspect of palliative care. The study suggests the potential contributions of theological approaches which are relevant for palliative care research and practice.

  1. 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.

  2. 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.

  3. 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.

  4. Three cases of hepatocellular carcinoma in Fontan patients: Review of the literature and suggestions for hepatic screening

    NARCIS (Netherlands)

    Josephus Jitta, Djike; Wagenaar, Lodewijk J.; Mulder, Barbara J. M.; Guichelaar, Maureen; Bouman, Donald; van Melle, Joost P.

    2016-01-01

    The Fontan procedure has been used since 1971 as a palliative treatment for various (functionally) univentricular hearts. The systemic venous blood flows passively to the pulmonary arteries, without passing through a functional ventricle. This results in chronic systemic venous congestion, which may

  5. Three cases of hepatocellular carcinoma in Fontan patients : Review of the literature and suggestions for hepatic screening

    NARCIS (Netherlands)

    Jitta, Djike Josephus; Wagenaar, Lodewijk J.; Mulder, Barbara J. M.; Guichelaar, Maureen; Bouman, Donald; Melle, van Joost P.

    2016-01-01

    The Fontan procedure has been used since 1971 as a palliative treatment for various (functionally) univentricular hearts. The systemic venous blood flows passively to the pulmonary arteries, without passing through a functional ventricle. This results in chronic systemic venous congestion, which may

  6. 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.

  7. Hemodynamic Effects of Ventricular Assist Device Implantation on Norwood, Glenn, and Fontan Circulation: A Simulation Study.

    Science.gov (United States)

    Di Molfetta, Arianna; Amodeo, Antonio; Gagliardi, Maria G; Trivella, Maria G; Fresiello, Libera; Filippelli, Sergio; Toscano, Alessandra; Ferrari, Gianfranco

    2016-01-01

    The growing population of failing single-ventricle (SV) patients might benefit from ventricular assist device (VAD) support as a bridge to heart transplantation. However, the documented experience is limited to isolated case reports. Considering the complex and different physiopathology of Norwood, Glenn, and Fontan patients and the lack of established experience, the aim of this work is to realize and test a lumped parameter model of the cardiovascular system able to simulate SV hemodynamics and VAD implantation effects to support clinical decision. Hemodynamic and echocardiographic data of 30 SV patients (10 Norwood, 10 Glenn, and 10 Fontan) were retrospectively collected and used to simulate patients' baseline. Then, the effects of VAD implantation were simulated. Simulation results suggest that the implantation of VAD: (i) increases the cardiac output and the mean arterial systemic pressure in all the three palliation conditions (Norwood 77.2 and 19.7%, Glenn 38.6 and 32.2%, and Fontan 17.2 and 14.2%); (ii) decreases the SV external work (Norwood 55%, Glenn 35.6%, and Fontan 41%); (iii) decreases the pressure pulsatility index (Norwood 65.2%, Glenn 81.3%, and Fontan 64.8%); (iv) increases the pulmonary arterial pressure in particular in the Norwood circulation (Norwood 39.7%, Glenn 12.1% and Fontan 3%); and (v) decreases the atrial pressure (Norwood 2%, Glenn 10.6%, and Fontan 8.6%). Finally, the VAD work is lower in the Norwood circulation (30.4 mL·mm Hg) in comparison with Fontan (40.3 mL·mm Hg) and to Glenn (64.5 mL·mm Hg) circulations. The use of VAD in SV physiology could be helpful to bridge patients to heart transplantations by increasing the CO and unloading the SV with a decrement of the atrial pressure and the SV external work. The regulation of the pulmonary flow is challenging because the Pap is increased by the presence of VAD. The hemodynamic changes are different in the different SV palliation step. The use of numerical models

  8. Cross-sectional imaging of the Fontan circuit in adult congenital heart disease

    International Nuclear Information System (INIS)

    Lewis, G.; Thorne, S.; Clift, P.; Holloway, B.

    2015-01-01

    The Fontan circuit is the result of a palliative surgical procedure that is performed in patients with a functionally single ventricle cardiac anomaly. The success of this operation has resulted in an increasing population of adults with this anatomy and physiology. The purpose of this article is to familiarize the general radiologist with the expected anatomy and cross-sectional imaging findings, highlight special imaging considerations, and examine the common complications that are encountered in this group of patients

  9. Measuring the Impact of the Home Health Nursing Shortage on Family Caregivers of Children Receiving Palliative Care.

    Science.gov (United States)

    Weaver, Meaghann S; Wichman, Brittany; Bace, Sue; Schroeder, Denice; Vail, Catherine; Wichman, Chris; Macfadyen, Andrew

    2018-06-01

    The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Respiratory technology and lack of Medicaid coverage ( P home nursing access. This study examines how the pediatric home nursing shortage translates into a lived experience for families with children with complex medical conditions receiving palliative care.

  10. Quantification of hepatic flow distribution using particle tracking for patient specific virtual Fontan surgery

    Science.gov (United States)

    Yang, Weiguang; Vignon-Clementel, Irene; Troianowski, Guillaume; Shadden, Shawn; Mohhan Reddy, V.; Feinstein, Jeffrey; Marsden, Alison

    2010-11-01

    The Fontan surgery is the third and final stage in a palliative series to treat children with single ventricle heart defects. In the extracardiac Fontan procedure, the inferior vena cava (IVC) is connected to the pulmonary arteries via a tube-shaped Gore-tex graft. Clinical observations have shown that the absence of a hepatic factor, carried in the IVC flow, can cause pulmonary arteriovenous malformations. Although it is clear that hepatic flow distribution is an important determinant of Fontan performance, few studies have quantified its relation to Fontan design. In this study, we virtually implanted three types of grafts (T-junction, offset and Y-graft) into 5 patient specific models of the Glenn (stage 2) anatomy. We then performed 3D time-dependent simulations and systematically compared the IVC flow distribution, energy loss, and pressure levels in different surgical designs. A robustness test is performed to evaluate the sensitivity of hepatic distribution to pulmonary flow split. Results show that the Y-graft design effectively improves the IVC flow distribution, compared to traditional designs and that surgical designs could be customized on a patient-by-patient basis.

  11. 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.

  12. Palliative care for patients with cancer: do patients receive the care they consider important? A survey study.

    Science.gov (United States)

    Heins, Marianne; Hofstede, Jolien; Rijken, Mieke; Korevaar, Joke; Donker, Gé; Francke, Anneke

    2018-04-17

    In many countries, GPs and home care nurses are involved in care for patients with advanced cancer. Given the varied and complex needs of these patients, providing satisfactory care is a major challenge for them. We therefore aimed to study which aspects of care patients, GPs and home care nurses consider important and whether patients receive these aspects. Seventy-two Dutch patients with advanced cancer, 87 GPs and 26 home care nurses rated the importance of support when experiencing symptoms, respect for patients' autonomy and information provision. Patients also rated whether they received these aspects. Questionnaires were based on the CQ index palliative care. Almost all patients rated information provision and respect for their autonomy as important. The majority also rated support when suffering from specific symptoms as important, especially support when in pain. In general, patients received the care they considered important. However, 49% of those who considered it important to receive support when suffering from fatigue and 23% of those who wanted to receive information on the expected course of their illness did not receive this or only did so sometimes. For most patients with advanced cancer, the palliative care that they receive matches what they consider important. Support for patients experiencing fatigue may need more attention. When symptoms are difficult to control, GPs and nurses may still provide emotional support and practical advice. Furthermore, we recommend that GPs discuss patients' need for information about the expected course of their illness.

  13. Increasing the Number of Outpatients Receiving Spiritual Assessment: A Pain and Palliative Care Service Quality Improvement Project.

    Science.gov (United States)

    Gomez-Castillo, Blanca J; Hirsch, Rosemarie; Groninger, Hunter; Baker, Karen; Cheng, M Jennifer; Phillips, Jayne; Pollack, John; Berger, Ann M

    2015-11-01

    Spirituality is a patient need that requires special attention from the Pain and Palliative Care Service team. This quality improvement project aimed to provide spiritual assessment for all new outpatients with serious life-altering illnesses. Percentage of new outpatients receiving spiritual assessment (Faith, Importance/Influence, Community, Address/Action in care, psychosocial evaluation, chaplain consults) at baseline and postinterventions. Interventions included encouraging clinicians to incorporate adequate spiritual assessment into patient care and implementing chaplain covisits for all initial outpatient visits. The quality improvement interventions increased spiritual assessment (baseline vs. postinterventions): chaplain covisits (25.5% vs. 50%), Faith, Importance/Influence, Community, Address/Action in care completion (49% vs. 72%), and psychosocial evaluation (89% vs. 94%). Improved spiritual assessment in an outpatient palliative care clinic setting can occur with a multidisciplinary approach. This project also identifies data collection and documentation processes that can be targeted for improvement. Published by Elsevier Inc.

  14. Work Experiences of Patients Receiving Palliative Care at a Comprehensive Cancer Center: Exploratory Analysis.

    Science.gov (United States)

    Glare, Paul A; Nikolova, Tanya; Alickaj, Alberta; Patil, Sujata; Blinder, Victoria

    2017-07-01

    Employment-related issues have been largely overlooked in cancer patients needing palliative care. These issues may become more relevant as cancer evolves into more of a chronic illness and palliative care is provided independent of stage or prognosis. To characterize the employment situations of working-age palliative care patients. Cross-sectional survey setting/subjects: Consecutive sample of 112 patients followed in palliative care outpatient clinics at a comprehensive cancer center. Thirty-seven-item self-report questionnaire covering demographics, clinical status, and work experiences since diagnosis. The commonest cancer diagnoses were breast, colorectal, gynecological, and lung. Eighty-one percent had active disease. Seventy-four percent were on treatment. Eighty percent recalled being employed at the time of diagnosis, with 65% working full time. At the time of the survey, 44% were employed and 26% were working full time. Most participants said work was important, made them feel normal, and helped them feel they were "beating the cancer". Factors associated with being employed included male gender, self-employed, and taking less than three months off work. Respondents with pain and/or other symptoms were significantly less likely to be working. On multivariate analysis, only pain (odds ratio [OR] 8.16, p gender (OR 2.07), self-employed (OR 3.07), and current chemotherapy (OR 1.81) were included in the model, but were not statistically significant in this small sample. Work may be an important issue for some palliative care patients. Additional research is needed to facilitate ongoing employment for those who wish or need to continue working.

  15. How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times.

    Science.gov (United States)

    Hexem, Kari R; Mollen, Cynthia J; Carroll, Karen; Lanctot, Dexter A; Feudtner, Chris

    2011-01-01

    How parents of children with life threatening conditions draw upon religion, spirituality, or life philosophy is not empirically well described. Participants were parents of children who had enrolled in a prospective cohort study on parental decision-making for children receiving pediatric palliative care. Sixty-four (88%) of the 73 parents interviewed were asked an open-ended question on how religion, spirituality, or life philosophy (RSLP) was helpful in difficult times. Responses were coded and thematically organized utilizing qualitative data analysis methods. Any discrepancies amongst coders regarding codes or themes were resolved through discussion that reached consensus. Most parents of children receiving palliative care felt that RSLP was important in helping them deal with tough times, and most parents reported either participation in formal religious communities, or a sense of personal spirituality. A minority of parents, however, did not wish to discuss the topic at all. For those who described their RSLP, their beliefs and practices were associated with qualities of their overall outlook on life, questions of goodness and human capacity, or that "everything happens for a reason." RSLP was also important in defining the child's value and beliefs about the child's afterlife. Prayer and reading the bible were important spiritual practices in this population, and parents felt that these practices influenced their perspectives on the medical circumstances and decision-making, and their locus of control. From religious participation and practices, parents felt they received support from both their spiritual communities and from God, peace and comfort, and moral guidance. Some parents, however, also reported questioning their faith, feelings of anger and blame towards God, and rejecting religious beliefs or communities. RSLP play a diverse and important role in the lives of most, but not all, parents whose children are receiving pediatric palliative care.

  16. 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

    2018-03-01

    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, pquality of life score (70.9±9.9 versus 85.7±8.0, pimproved their submaximal exercise capacity in a 6-minute walk test (from 590.7±65.5 m to 611.8±70.9 m, pquality of life (pimprove maximal exercise capacity. At follow-up, submaximal exercise capacity had increased further and improved quality of life was sustained. The controls improved their maximal exercise capacity (pquality of life after training. 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.

  17. Thromboembolism and anticoagulation after Fontan surgery

    OpenAIRE

    Viswanathan, Sangeetha

    2016-01-01

    This review attempts to answer the common questions faced by a clinician regarding thromboembolism and thromboprophylaxis in patients following Fontan surgery. The review is in an easy to understand question and answer format and discusses the currently available literature on the subject in an attempt to arrive at practical clinically relevant solutions. Patients who have undergone the Fontan operation are at a high risk for thromboembolism. Based on available evidence, there is a strong rat...

  18. 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

  19. 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.

  20. Factors associated with emergency services use in Taiwanese advanced cancer patients receiving palliative home care services during out-of-hours periods: a retrospective medical record study.

    Science.gov (United States)

    Kao, Yee-Hsin; Liu, Yao-Ting; Koo, Malcolm; Chiang, Jui-Kun

    2018-03-12

    For patients receiving palliative home care, the need to visit the emergency department is considered to be an indicator of poor quality care. The situation can be particularly distressing when it occurs outside of normal hours of palliative home care service. The aim of this study was to investigate the factors for emergency department use during out-of-hours periods of palliative home care service among advanced cancer patients in Taiwan. This case-control study was based on a retrospective medical chart review (January 2010 to December 2012) of advanced cancer patients who were receiving palliative home care in a community hospital in south Taiwan. The use of emergency medical services by these patients was dichotomized into either normal hours (8 a.m. to midnight, Monday to Friday, excluding public holidays) of palliative home care or outside normal hours. Logistic regression analyses were performed to evaluate factors associated with emergency services use during out-of-hours period of palliative home care. Of the 94 patients receiving palliative home care, 65 had used emergency services at least once during the 3-year study period. Of these 65 patients, 40% used emergency services during out-of-hours of palliative home care. Patients with distressing conditions (defined as the occurrence of any two conditions of dyspnea, change of consciousness, or gastrointestinal bleeding) were significantly more likely to use emergency services during out-of-hours of palliative home care. Patients at risk of developing dyspnea, change of consciousness, or gastrointestinal bleeding should be provided with relevant information regarding these symptoms and signs.

  1. Usefulness of peripheral vascular function to predict functional health status in patients with Fontan circulation.

    Science.gov (United States)

    Goldstein, Bryan H; Golbus, Jessica R; Sandelin, Angela M; Warnke, Nicole; Gooding, Lindsay; King, Karen K; Donohue, Janet E; Gurney, James G; Goldberg, Caren S; Rocchini, Albert P; Charpie, John R

    2011-08-01

    After the Fontan operation, patients are at a substantial risk of the development of impaired functional health status. Few early markers of suboptimal outcomes have been identified. We sought to assess the association between peripheral vascular function and functional health status in Fontan-palliated patients. Asymptomatic Fontan patients (n = 51) and age- and gender-matched healthy controls (n = 22) underwent endothelial pulse amplitude testing using a noninvasive fingertip peripheral arterial tonometry (PAT) device. Raw data were transformed into the PAT ratio, an established marker of vascular function. Cardiopulmonary exercise testing was performed using the Bruce protocol. In the Fontan cohort, 94% of patients were New York Heart Association functional class I and 88% had a B-type natriuretic peptide level of interquartile range 1.96 to 4.13 vs median 1.86, interquartile range 1.14 to 2.79, p = 0.03). The PAT ratio, a measure of reactive hyperemia, was lower in Fontan patients (median 0.17, interquartile range -0.04 to 0.44, vs median 0.50, interquartile range 0.27 to 0.74, p = 0.002). The key parameters of exercise performance, including peak oxygen consumption (median 28.8 ml/kg/min, interquartile range 25.6 to 33.2 vs median 45.5 ml/kg/min, interquartile range 41.7 to 49.9, p interquartile range 150 to 246 vs median 330, interquartile range 209 to 402 W, p <0.0001), were lower in Fontan patients than in the controls. The PAT ratio correlated with the peak oxygen consumption (r = 0.28, p = 0.02) and peak work (r = 0.26, p = 0.03). In conclusion, in an asymptomatic Fontan population, there is evidence of reduced basal peripheral arterial tone and vasodilator response, suggesting dysfunction of the endothelium-derived nitric oxide pathway. Vasodilator function appears to correlate with exercise performance. Copyright © 2011 Elsevier Inc. All rights reserved.

  2. Oropharyngeal dysphagia: the experience of patients with non-head and neck cancers receiving specialist palliative care.

    Science.gov (United States)

    Roe, Justin W G; Leslie, Paula; Drinnan, Michael J

    2007-10-01

    Difficulty swallowing is a well-documented symptom in head and neck cancer and oesophageal malignancy. The frequency of oropharyngeal swallowing difficulties in the palliative phase of other malignancies is less reported. 1) To describe the patient experience of swallowing and associated difficulties while receiving specialist palliative care for malignancies other than those affecting the head and neck and 2) to identify the quality of life issues for the participants with dysphagia and compare with normative and dysphagic data provided by SWAL-QOL. Four month prospective pilot study - questionnaire design. Acute teaching hospital. Eleven patients receiving specialist palliative care. Participants were interviewed using a modified version of the SWAL-QOL, a validated quality of life assessment tool for use specifically with people with oropharyngeal dysphagia. Eight quality of life domains were explored as well as fourteen dysphagic symptoms. Seven of the 11 participants had dysphagic symptoms detailed in the SWAL-QOL and a further two patients reported transient dysphagic symptoms since diagnosis of their disease. Nine participants reported an impact on their quality of life and three reported a considerable impact in four or more domains. Eight of the 11 participants had self-selected softer textured foods. A notable group were three patients with lung cancer and one with lung metastases with a history of vocal fold motion impairment, all of who had experienced dysphagic symptoms since diagnosis. Patients with cancers not affecting the head and neck are at risk of developing symptoms of oropharyngeal dysphagia and subsequently, compromized nutrition, hydration and quality of life. Areas for further research are suggested.

  3. 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.

  4. Pro re nata prescribing in a population receiving palliative care: a prospective consecutive case note review.

    Science.gov (United States)

    Russell, Bethany J; Rowett, Debra; Currow, David C

    2014-09-01

    To document pro re nata (PRN) prescribing practices and to identify patterns with respect to clinical characteristics and the medications prescribed. Prospective consecutive case note review. Two interrelated consultative hospice and palliative care services in regional Victoria, Australia. Terminally ill inpatients and community-based individuals (N = 203) at the time of referral to a hospice or palliative care service. Number of medications that the referring physician prescribed on a PRN basis and on a regular basis for symptom control; comorbid disease, performance status, comorbidity burden, disease phase, and survival. Mean number of PRN medications prescribed was 3.0, with significantly higher rates in the last week of life (rate ratio (RR) = 1.30, 95% confidence interval (CI) = 1.07-1.59) and during the terminal phase of disease (RR = 1.36, 95% CI = 1.09-1.68). One-quarter of prescriptions were for medications that met the Beers consensus criteria for potentially inappropriate medication use in elderly persons. These descriptive baseline data are new. A mean of three different medications allows responsiveness to a variety of fluctuating symptoms, but there was a large range within the sample, indicating that some individuals and their caregivers have a high burden of administration-related decision-making. © 2014, Copyright the Authors Journal compilation © 2014, The American Geriatrics Society.

  5. Palliative Care

    Science.gov (United States)

    Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...

  6. Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care.

    Science.gov (United States)

    Carroll, Karen W; Mollen, Cynthia J; Aldridge, Sarah; Hexem, Kari R; Feudtner, Chris

    2012-01-01

    Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized. As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital's pediatric palliative care service. The semistructured interviews focused on "decision making for your child"; the interviews were recorded and transcribed. A random sample (n = 13) was first coded and analyzed for core themes, and these themes were then cross-validated with a second random sample (n = 3) of interviews. Four dominant interrelated themes permeated parents' discussions about the decisions they were making for their children and the process of decision making. First, Orientation and Direction (including the subthemes of Goals and Hopes, Spirituality and Meaning, and Purposeful Effort) connotes the parents' effort to establish and clarify the broad context of decision making. Second, Defining What Is Good for the Child (including the subthemes of Quality of Life and Suffering, and Normalcy and Normalization) conveys how the parents posed questions and pondered what decisions would be in the child's best interests. Third, the entwined theme of Relationships, Communication, and Support reflects how parents reported the social and interactive nature of decision making. Fourth, the theme of Feelings and Personal Accountability focuses inward as parents report efforts to deal with their emotional responses and self-judgments. Parents report grappling with several influences upon their decision-making processes that extend well beyond the standard discussions of medical information exchanges and the evaluation of risks and benefits. Decision support for these parents should account for these diverse influences.

  7. 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

    BACKGROUND: Patients with advanced cancer often experience fatigue and other symptoms that negatively impact their quality of life. The current trial investigated the effect of melatonin on fatigue and other symptoms in patients with advanced cancer. METHODS: Patients who were aged ≥18 years, had...... the placebo and melatonin periods were found for physical fatigue, secondary outcomes, or explorative outcomes. CONCLUSIONS: In the current study, oral melatonin at a dose of 20 mg was not found to improve fatigue or other symptoms in patients with advanced cancer....... 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...

  8. Palliative Care in Cancer

    Science.gov (United States)

    ... care is usually provided by palliative care specialists, health care practitioners who have received special training and/or certification in palliative care. They provide holistic care to the patient and family or caregiver ...

  9. The Cost Differential Between Warfarin Versus Aspirin Treatment After a Fontan Procedure.

    Science.gov (United States)

    Schilling, Chris; Dalziel, Kim; Iyengar, Ajay J; d'Udekem, Yves

    2017-08-01

    The use of aspirin versus warfarin for treatment of patients after a Fontan procedure remains contentious. Current preference-based models of treatment across Australia and New Zealand show variation in care that is unlikely to reflect patient differences and/or clinical risk. We combine data from the Australian and New Zealand Fontan Registry and a home INR (International Normalised Ratio) monitoring program (HINRMP) from the Royal Children's Hospital (RCH) Melbourne, to estimate the cost difference for Fontan recipients receiving aspirin versus warfarin for 2015. We adopt a societal perspective to costing which includes cost to the health system (e.g. medical consults, pathology tests) and costs to patients and carers (e.g. travel and time), but excludes costs of adverse events. Costs are presented in Australian 2015 dollars; any costs from previous years have been inflated using appropriate rates from the Australian Bureau of Statistics. We find that warfarin patients face additional costs of $825 per annum, with the majority ($584 or 71%) of those borne by the patient or family. If aspirin is as clinically as effective as warfarin, Fontan recipients could be enjoying far less costly, invasive and time-consuming treatment. While achieving such clinical consensus can be difficult, economics shows us that there are large costs associated with a failure to achieve it. Copyright © 2017. Published by Elsevier B.V.

  10. Palliative radiation for vertebral metastases: the effect of variation in prescription parameters on the dose received at depth

    International Nuclear Information System (INIS)

    Barton, Rachael; Robinson, Graham; Gutierrez, Eric; Kirkbride, Peter; McLean, Michael

    2002-01-01

    Purpose: To assess the effect of prescription parameters on the dose received by the spine during palliative radiotherapy. Methods and Materials: In a survey, members of the Canadian Association of Radiation Oncologists were asked to define their prescription parameters for vertebral metastases. The depth of the spinal canal and vertebral body at 8 spinal levels was measured in 20 magnetic resonance imaging studies (MRIs). Survey results were applied to the measurements to assess the dose received at depth. The depth of spinal structures assessed at simulation and by diagnostic imaging was compared. Results: Prescriptions were most commonly to D max 3 cm or 5 cm using 60 Co-6MV photons delivering 8-30 Gy in 1-10 fractions. Mean depths from MRI were: posterior spinal canal, 5.5 cm; anterior spinal canal, 6.9 cm; and anterior vertebral body, 9.6 cm. Application of the prescription parameters from the survey to these measurements showed a wide range in the dose at depth with variation in technique. Depths measured at simulation correlated well with diagnostic imaging. Conclusion: The spinal canal and vertebral body lie >5 cm beneath the skin, and the dose received varies by up to 50% with changes in prescription depth. We suggest a suitable prescription point for vertebral metastases and a method for determining this at simulation

  11. Peptic ulcer disease and other complications in patients receiving dexamethasone palliation for brain metastasis

    International Nuclear Information System (INIS)

    Penzner, R.D.; Lipsett, J.A.

    1982-01-01

    A retrospective analysis was done of 106 patients who received radiation therapy for brain metastasis. Dexamethasone therapy was instituted in 97 patients. Peptic ulcer disease developed in 5 of 89 patients (5.6 percent) who received a dosage of at least 12 mg a day, but did not occur in patients who received a lower dose or in those who did not receive steroids. The interval between institution of dexamethasone therapy and the development of peptic ulcer disease ranged from three to nine weeks. Two patients had perforated ulcers, one of whom required surgical resection. Peptic ulcer disease contributed to the general deterioration and death of three of the five patients. Overall, in 14 of the 89 patients (15.7 percent) a complication of steroid therapy developed in the form of peptic ulcer disease, steroid myopathy or diabetes mellitus (or a combination of these)

  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...... patients and controls respectively. CONCLUSION: SVI decreased significantly in Fontan patients near the end of maximal effort exercise. The low SVI at maximal exercise was the most important hemodynamic factor limiting exercise capacity in Fontan patients, whereas chronotropic impairment had a smaller...

  13. 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...

  14. 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.

  15. The development and evaluation of a multimedia resource for family carers of patients receiving palliative care: a consumer-led project.

    Science.gov (United States)

    Thomas, Kristina; Moore, Gaye

    2015-06-01

    Previous intervention research has shown that group education sessions for carers are effective but not always feasible due to the demands of the caregiving role and the difficulty in getting carers to attend. This project was a consumer-led research initiative to develop and evaluate a multimedia resource (DVD) providing information and support for carers of people receiving palliative care. Eight carers were recruited from a community palliative care service to form a steering committee for the project. In collaboration with two researchers, the committee discussed the topics that would be included in the resource, developed an interview guide, participated in the filmed interviews, and developed the evaluation program. The steering committee participated in a focus group as part of the evaluation to elicit their experiences of the project. An evaluation was conducted that included the following: questionnaires for 29 carers and 17 palliative care health professionals; follow-up telephone interviews with carers; a focus group with health professionals; and a focus group with the Carer Steering Committee. The carers and health professionals reported that the DVD was informative (93 and 94%, respectively), realistic (96 and 88%), supportive (93 and 88%), and helpful (83 and 100%). All health professionals and carers reported that they would recommend the resource to carers. Carers on the steering committee reported substantial benefits that involved the opportunity to help others and to openly discuss and reflect on their experiences. This is an important resource that can be utilized to support family carers and introduce palliative care. Currently, 1500 copies have been distributed to palliative care services and professionals nationwide and is available online at centreforpallcare.org/index.php/resources/carer_dvd/. Development of this DVD represents a strong collaboration between carers and researchers to produce a resource that is informative, supportive, and

  16. 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.

  17. Comparing Pre- and Post-Operative Fontan Hemodynamic Simulations: Implications for the Reliability of Surgical Planning

    Science.gov (United States)

    Haggerty, Christopher M.; de Zélicourt, Diane A.; Restrepo, Maria; Rossignac, Jarek; Spray, Thomas L.; Kanter, Kirk R.; Fogel, Mark A.; Yoganathan, Ajit P.

    2012-01-01

    Background Virtual modeling of cardiothoracic surgery is a new paradigm that allows for systematic exploration of various operative strategies and uses engineering principles to predict the optimal patient-specific plan. This study investigates the predictive accuracy of such methods for the surgical palliation of single ventricle heart defects. Methods Computational fluid dynamics (CFD)-based surgical planning was used to model the Fontan procedure for four patients prior to surgery. The objective for each was to identify the operative strategy that best distributed hepatic blood flow to the pulmonary arteries. Post-operative magnetic resonance data were acquired to compare (via CFD) the post-operative hemodynamics with predictions. Results Despite variations in physiologic boundary conditions (e.g., cardiac output, venous flows) and the exact geometry of the surgical baffle, sufficient agreement was observed with respect to hepatic flow distribution (90% confidence interval-14 ± 4.3% difference). There was also good agreement of flow-normalized energetic efficiency predictions (19 ± 4.8% error). Conclusions The hemodynamic outcomes of prospective patient-specific surgical planning of the Fontan procedure are described for the first time with good quantitative comparisons between preoperatively predicted and postoperative simulations. These results demonstrate that surgical planning can be a useful tool for single ventricle cardiothoracic surgery with the ability to deliver significant clinical impact. PMID:22777126

  18. Effect of Lorazepam With Haloperidol vs Haloperidol Alone on Agitated Delirium in Patients With Advanced Cancer Receiving Palliative Care

    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

    2017-01-01

    IMPORTANCE The use of benzodiazepines to control agitation in delirium in the last days of life is controversial. OBJECTIVE 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. DESIGN, SETTING, AND PARTICIPANTS 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. INTERVENTIONS Lorazepam (3 mg) intravenously (n = 47) or placebo (n = 43) in addition to haloperidol (2 mg) intravenously upon the onset of an agitation episode. MAIN OUTCOMES AND MEASURES 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. RESULTS 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 haloperidol group required less median rescue neuroleptics (2.0 mg) than the placebo + haloperidol group (4.0 mg) (median difference, −1.0 mg [95% CI, −2.0 to 0]; P = .009) and was perceived to be more comfortable by both blinded caregivers and nurses (caregivers: 84% for the lorazepam + haloperidol group vs 37% for the placebo + haloperidol group; mean difference, 47

  19. Fontan-associated protein-losing enteropathy and plastic bronchitis: characterizing current-era risk factors, course, and progression

    Science.gov (United States)

    Schumacher, Kurt R.; Stringer, Kathleen A.; Donohue, Janet E.; Yu, Sunkyung; Shaver, Ashley; Caruthers, Regine L.; Zikmund-Fisher, Brian J.; Fifer, Carlen; Goldberg, Caren; Russell, Mark W.

    2015-01-01

    Objective Characterize the medical history, disease progression, and treatment of current-era patients with the rare diseases Fontan-associated protein losing enteropathy (PLE) and plastic bronchitis (PB). Study Design A novel survey that queried demographics, medical details, and treatment information was piloted and placed online via a Facebook portal allowing social media to power the study. Participation regardless of PLE or PB diagnosis was allowed. Case control analyses compared patients with PLE and PB to uncomplicated control Fontan patients. Results The survey was completed by 671 subjects including 76 with PLE, 46 with PB, and 7 with both. Median PLE diagnosis was 2.5 years post-Fontan. Hospitalization for PLE occurred in 71% with 41% hospitalized ≥ 3 times. Therapy varied significantly. PLE patients more commonly had hypoplastic left ventricle (62% vs 44% control; OR 2.8, 95% CI 1.4–5.5), chylothorax (66% vs 41%; OR 3.0, CI 1.6–5.3), and cardiothoracic surgery in addition to staged palliation (17% vs 5%; OR 4.3, CI 1.6, 11.2). Median PB diagnosis was 2 years post-Fontan. Hospitalization for PB occurred in 91% with 61% hospitalized ≥3 times. Therapy was very diverse. PB patients more commonly had chylothorax at any surgery (72% vs 51%; OR 2.5, CI 1.2–5.1) and seasonal allergies (52% vs 36%; OR 2.0, CI 1.0–3.9). Conclusions Patient-specific factors are associated with diagnoses of PLE or PB. Treatment strategies are diverse without clear patterns. These results provide a foundation upon which to design future therapeutic studies and identify a clear need for forming consensus approaches to treatment. PMID:25661406

  20. Feasibility of a Cognitive-Behavioral and Environmental Intervention for Sleep-Wake Difficulties in Community-Dwelling Cancer Patients Receiving Palliative Care.

    Science.gov (United States)

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

    2018-05-14

    High rates of sleep-wake difficulties have been found in patients with cancer receiving palliative care. Pharmacotherapy is the most frequently used treatment option to manage these difficulties despite numerous adverse effects and the absence of empirical evidence of its efficacy and innocuity in palliative care. This pilot study aimed to assess the feasibility and acceptability of a cognitive-behavioral and environmental intervention (CBT-E) to improve insomnia and hypersomnolence in patients with a poor functioning level and to collect preliminary data on its effects. Six patients with cancer receiving palliative care (Eastern Cooperative Oncology Group score 2-3), who had insomnia and/or hypersomnolence, received 1 CBT-E individual session at home. They applied the strategies for 3 weeks. Patients completed the Insomnia Severity Index, the Epworth Sleepiness Scale, a daily sleep diary, and a 24-hour actigraphic recording (7 days) at pretreatment and posttreatment, in addition to a semistructured interview (posttreatment). Participants found strategies easy to apply most of the time, and none was rated as impossible to use because of their health condition. However, their adherence and satisfaction toward CBT-E were highly variable. Results on the effects of CBT-E were heterogeneous, but improvements were observed in patients with a persistent insomnia disorder. The CBT-E protocol tested among this highly selected sample was fairly well received and suggested positive outcomes in some patients, particularly those with an insomnia complaint alone. Efforts should be pursued to adapt CBT-E and develop other nonpharmacological interventions, in order to provide an alternative to pharmacotherapy for sleep-wake difficulties in this population.

  1. How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement?

    Science.gov (United States)

    Avoine-Blondin, Josianne; Parent, Véronique; Fasse, Léonor; Lopez, Clémentine; Humbert, Nago; Duval, Michel; Sultan, Serge

    2018-05-08

    It is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present study aims to: 1) Identify signs of quality of life and evaluation methods currently used by professionals to assess the quality of life of children with cancer receiving palliative care. 2) Collect recommendations from professionals to improve the evaluation of quality of life in this context. We selected a qualitative research design and applied an inductive thematic content analysis to the verbal material. Participants included 20 members of the Department of Hematology-Oncology at CHU Sainte-Justine from various professions (e.g. physicians, nurses, psychosocial staff) who had cared for at least one child with cancer receiving palliative care in the last year. Professionals did not have access to pre-established criteria or to a defined procedure to assess the quality of life of children they followed in the context of PPC. They reported basing their assessment on the child's non-verbal cues, relational availability and elements of his/her environment. These cues are typically collected through observation, interpretation and by asking the child, his/her parents, and other members of the care. To improve the assessment of quality of life professionals recommended optimizing interdisciplinary communication, involving the child and the family in the evaluation process, increasing training to palliative care in hematology/oncology, and developing formalized measurement tools. The formulation of explicit criteria to assess the quality of life in this context, along with detailed

  2. 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.

  3. Comparison of an inflammation-based prognostic score (GPS) with performance status (ECOG-ps) in patients receiving palliative chemotherapy for gastroesophageal cancer.

    Science.gov (United States)

    Crumley, Andrew B C; Stuart, Robert C; McKernan, Margaret; McDonald, Alexander C; McMillan, Donald C

    2008-08-01

    The aim of the present study was to compare an inflammation-based prognostic score (Glasgow Prognostic Score, GPS) with performance status (ECOG-ps) in patients receiving platinum-based chemotherapy for palliation of gastroesophageal cancer. Sixty-five patients presenting with gastroesophageal carcinoma to the Royal Infirmary, Glasgow between January 1999 and December 2005 and who received palliative chemotherapy or chemo-radiotherapy were studied. ECOG-ps, C-reactive protein, and albumin were recorded at diagnosis. Patients with both an elevated C-reactive protein (>10 mg/L) and hypoalbuminemia (L) were allocated a GPS of 2. Patients in whom only one of these biochemical abnormalities was present were allocated a GPS of 1 and patients with a normal C-reactive protein and albumin were allocated a score of 0. Toxicity was recorded using the Common Toxicity Criteria. The minimum follow up was 14 months. During the follow-up period, 59 (91%) of the patients died. On univariate and multivariate survival analysis, only the GPS (hazard ratios 1.65, 95% CI 1.10-2.47, P GPS of 0, those patients with a GPS of 1 or 2 required more frequent chemotherapy dose reduction (P GPS, appears to be superior to the subjective assessment of performance status (ECOG-ps) in predicting the response to platinum-based chemotherapy in patients with advanced gastroesophageal cancer.

  4. 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

  5. Quality of life and cognitive function in Fontan patients, a population-based study

    DEFF Research Database (Denmark)

    Idorn, Lars; Jensen, Annette S; Juul, Klaus

    2013-01-01

    BACKGROUND: After the Fontan procedure patients are at risk for reduced quality of life (QoL) and cognitive function. We aimed to assess these important factors in Danish Fontan patients and to compare the results with a group of healthy controls. METHODS: All Fontan patients living in Denmark we...

  6. Heart transplantation in Fontan patients across Australia and New Zealand.

    Science.gov (United States)

    Shi, William Y; Yong, Matthew S; McGiffin, David C; Jain, Pankaj; Ruygrok, Peter N; Marasco, Silvana F; Finucane, Kirsten; Keogh, Anne; d'Udekem, Yves; Weintraub, Robert G; Konstantinov, Igor E

    2016-07-15

    Patients with Fontan physiology may eventually require heart transplantation (HT). We determined the rates and outcomes of HT in a national, population-based multicentre study. From 1990 to 2015, 1369 patients underwent the Fontan procedure as recorded in the Australia and New Zealand Fontan Registry. We identified those who underwent HT and analysed their outcomes. We compared rates of HT between two catchment areas. In area 1 (n=721), patients were referred to the national paediatric HT programme or its associated adult programme. In area 2 (n=648), patients were referred to the national paediatric HT programme or one of the other adult HT programmes. Mean follow-up time post-Fontan was 11±8 years. Freedom from Fontan failure was 74%±3.9% at 20 years. HT was performed in 34 patients. Patients living in area 1 were more likely to have HT (4.0%, 29/721 vs 0.8%, 5/648, p<0.001) with a cumulative proportion of 3.4% vs 0.7% at 10 years and 6.8% vs 1.2% at 20 years (p=0.002). Area 1 patients were more likely to undergo HT (hazard ratio 4.7, 95% CI 1.7 to 13.5, p=0.003) on multivariable regression. Post-HT survival at 1, 5 and 10 years was 91%, 78% and 71%, respectively. Compared with other patients with congenital heart disease (n=87), Fontan patients had similar in-hospital outcomes and long-term survival. Although HT after the Fontan procedure can be achieved with excellent outcomes, most patients with Fontan failure do not undergo HT. Significant regional differences in rates of HT in Fontan patients exist. 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. Prevalence of upper gastrointestinal symptoms and their influence on nutritional state and performance status in patients with different primary tumors receiving palliative care.

    Science.gov (United States)

    Bovio, Giacomo; Fonte, Maria Luisa; Baiardi, Paola

    2014-02-01

    The aim of this study was to investigate the relationship between gastrointestinal symptoms, nutritional balance, and performance status in patients receiving palliative care for advanced cancers originating in different sites. We studied a total of 105 patients. Upper gastrointestinal symptoms, Eastern Cooperative Oncology Group Performance Status score (ECOG-PS), dietary intakes, anthropometric measures, and some serum proteins were determined. Unintentional weight loss, alterations in anthropometric measures, and highest number of symptoms were greater in patients with lung and stomach cancer. No differences were found in ECOG-PS according to cancer site. Patients with gastric or lung cancer have most evidence of protein-calorie malnutrition and a higher prevalence of upper gastrointestinal symptoms. The performance status is not affected by tumor site. Early nutritional support should be planned for all patients with cancer, especially for patients with gastric or lung cancer.

  8. 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 < .01). Patients receiving PC consultations compared with those who did not were older (75.0 years [SD 10.9] vs 70.6 years [SD 9.7]; P < .01), had longer hospitalizations (4.9 days [interquartile range, 2.6-8.2] vs 3.5 days [interquartile range, 2.1-5.6]), and more likely to die in hospital (32.1% vs 1.5%; P < .01). Race was significantly associated with referral to 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.

  9. 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.

  10. Experimental investigation of the effects of inserting a bovine venous valve in the inferior vena cava of Fontan circulation

    Science.gov (United States)

    Santhanakrishnan, Arvind; Johnson, Jacob; Kotz, Monica; Tang, Elaine; Khiabani, Reza; Yoganathan, Ajit; Maher, Kevin

    2012-11-01

    The Fontan procedure is a palliative surgery performed on patients with single ventricle (SV) congenital heart defects. The SV is used for systemic circulation and the venous return from the inferior vena cava (IVC) and superior vena cava (SVC) is routed to the pulmonary arteries (PA), resulting in a total cavopulmonary connection (TCPC). Hepatic venous hypertension is commonly manifested in the Fontan circulation, leading to long-term complications including liver congestion and cirrhosis. Respiratory intrathoracic pressure changes affect the venous return from the IVC to the PA. Using a physical model of an idealized TCPC, we examine placement of a unidirectional bovine venous valve within the IVC as a method of alleviating hepatic venous hypertension. A piston pump is used to provide pulsatility in the internal flow through the TCPC, while intrathoracic pressure fluctuations are imposed on the external walls of the model using a pair of linear actuators. When implanted in the extrathoracic position, the hepatic venous pressure is lowered from baseline condition. The effects of changing caval flow distribution and intrathoracic pressure on TCPC hemodynamics will be examined.

  11. Characterization of patients receiving palliative chemo- and radiotherapy during end of life at a regional cancer center in Norway.

    Science.gov (United States)

    Anshushaug, Malin; Gynnild, Mari Aas; Kaasa, Stein; Kvikstad, Anne; Grønberg, Bjørn H

    2015-03-01

    Many cancer patients receive chemotherapy and radiotherapy their last 30 days [end of life (EOL)]. The benefit is questionable and side effects are common. The aim of this study was to investigate what characterized the patients who received chemo- and radiotherapy during EOL, knowledge that might be used to improve practice. Patients dead from cancer in 2005 and 2009 were analyzed. Data were collected from hospital medical records. When performance status (PS) was not stated, PS was estimated from other information in the records. A Glasgow Prognostic Score (GPS) of 0, 1 or 2 was assessed from blood values (CRP and albumin). A higher score is associated with a shorter prognosis. In total 616 patients died in 2005; 599 in 2009. Among the 723 analyzed, median age was 71; 42% had metastases at diagnosis (synchronous metastases); 53% had PS 2 and 16% PS 3-4 at the start of last cancer therapy. GPS at the start of last cancer therapy was assessable in 70%; of these, 26% had GPS 1 and 35% GPS 2. Overall, 10% received chemotherapy and 8% radiotherapy during EOL. The proportions varied significantly between the different types of cancer. Multivariate analyses revealed that those at agelife. GPS 2 and synchronous metastases were most significantly associated with cancer therapy the last 30 days of life, indicating that in general, patients with the shortest survival time after diagnosis of cancer received more chemo- and radiotherapy during EOL than other patients.

  12. Assessment of Liver Stiffness in Pediatric Fontan Patients Using Transient Elastography

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    Becky Chen

    2016-01-01

    Full Text Available Background. Hepatic fibrosis is a potential complication following Fontan surgery and heralds long-term risk for cirrhosis. Transient elastography (TE is a rapid, noninvasive method to assess liver fibrosis by measuring liver stiffness. Objectives. To compare liver stiffness and liver biochemistries in pediatric Fontan patients with age- and sex-matched controls and to determine patients’ acceptance of TE. Methods. Patients were recruited from British Columbia Children’s Hospital. Twenty-two Fontan patients (15 males were identified. Demographic information and cardiac data were collected. TE was measured using size-appropriate probes. Results. The median age of the Fontan cohort was 13.7 (5.9–16.8 years. Time from Fontan surgery to TE was 9.6 (1.0–12.9 years. The median Fontan circuit pressure was 13 (11–14 mmHg. TE values were higher in Fontan patients versus controls (18.6 versus 4.7 kPa, p<0.001. There was no association between TE values and patient age (r=0.41, p=0.058, time since Fontan surgery (r=0.40, p=0.062, or median Fontan circuit pressure (CVP (r=0.35, p=0.111. Patients found TE to be nonpainful, convenient, and safe. Conclusions. TE is feasible to assess liver stiffness in children following Fontan surgery. Pediatric Fontan patients have markedly elevated liver stiffness values. TE may have important utility in liver care follow-up of pediatric Fontan patients.

  13. Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities.

    Science.gov (United States)

    Wallerstedt, Birgitta; Andershed, Birgitta; Benzein, Eva

    2014-12-01

    To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service. Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation. Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received. Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

  14. Challenges of management and therapy in patients with a functionally single ventricle after Fontan operation.

    Science.gov (United States)

    Trojnarska, Olga; Ciepłucha, Aleksandra

    2011-01-01

    Forty years ago, Fontan and Baudet performed the first life-saving operation on a patient with a functionally single ventricle. This multi-stage procedure established the connection between systemic venous circulation and pulmonary arteries. As a consequence, the pulmonary circulation is supplied in a passive way, whereas the single ventricle pumps the blood into the systemic circulation only. Over the years, the technique of creating the abovementioned vascular connections has undergone several modifications. Due to the fundamental non-physiological hemodynamic relations between arterial pulmonary and systemic venous pressures, numerous complications can be observed in these patients including: supraventricular arrhythmias, thromboemboli, hepatic dysfunction, protein-losing enteropathy, heart failure, worsening cyanosis, systemic venous collateralization, and pulmonary arteriovenous malformations, as well as connective tissue lesions in bronchi. Although based on an ingenious concept, the operation remains of a palliative character. Occasionally, heart transplantation is the ultimate resolution. Pharmacological therapy, and surgical conversion, often appear to be ineffective. However, this procedure has enabled many patients to reach adulthood and enjoy their lives to the full. This fact poses a great challenge for cardiologists wishing to become more knowledgeable and experienced as regards such patients, if we are not to waste such fabulous surgical achievements.

  15. Fontan Surgical Planning: Previous Accomplishments, Current Challenges, and Future Directions.

    Science.gov (United States)

    Trusty, Phillip M; Slesnick, Timothy C; Wei, Zhenglun Alan; Rossignac, Jarek; Kanter, Kirk R; Fogel, Mark A; Yoganathan, Ajit P

    2018-04-01

    The ultimate goal of Fontan surgical planning is to provide additional insights into the clinical decision-making process. In its current state, surgical planning offers an accurate hemodynamic assessment of the pre-operative condition, provides anatomical constraints for potential surgical options, and produces decent post-operative predictions if boundary conditions are similar enough between the pre-operative and post-operative states. Moving forward, validation with post-operative data is a necessary step in order to assess the accuracy of surgical planning and determine which methodological improvements are needed. Future efforts to automate the surgical planning process will reduce the individual expertise needed and encourage use in the clinic by clinicians. As post-operative physiologic predictions improve, Fontan surgical planning will become an more effective tool to accurately model patient-specific hemodynamics.

  16. Renal abscess after the Fontan procedure: a case report

    Directory of Open Access Journals (Sweden)

    Kumar Suresh

    2011-02-01

    Full Text Available Abstract Introduction The Fontan procedure is an intervention that helps to correct single ventricle physiology. There are many known long-term complications of 'Fontan physiology'. However, the occurrence of renal abscess in such patients has not yet been reported in the literature. The first generation of adults has now undergone the procedure and it is necessary to be aware of the long-term outcomes and complications associated with it. Case presentation We report the case of a 22-year-old South Indian man who had developed a staphylococcal renal abscess against a background of xanthogranulomatous pyelonephritis, nine years after Fontan surgery. He presented to our hospital with a high-grade fever of 25-days duration but with no other symptoms. Physical examination identified costovertebral angle tenderness and pedal edema. An ultrasound scan revealed a mass in his left kidney. The results of a computed tomography scan were consistent with a renal abscess. Despite treatment with the appropriate parenteral antibiotics, there was no change in the size of the abscess and a left nephrectomy was performed as a curative procedure. Conclusions The learning points here are manifold. It is important to be aware of the possibility of renal abscess in a post-procedural patient. The early diagnosis of a septic focus in the kidneymay help to prevent the rare outcome of nephrectomy.

  17. 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.

  18. Palliative Care

    Science.gov (United States)

    ... for Patients and Families What Is Palliative Care? Definition Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to ...

  19. Palliative Care.

    Science.gov (United States)

    Swetz, Keith M; Kamal, Arif H

    2018-03-06

    Palliative care prioritizes symptom management and quality of life throughout the course of serious illness. Regardless of whether care is inpatient or outpatient, primary or subspecialty, a solid understanding of the basics of effective communication, symptom management, and end-of-life care is crucial. This article reviews these essentials and provides an overview of current evidence to support patient-centered palliative care.

  20. 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

  1. Pilot-testing the French version of a provisional European organisation for research and treatment of cancer (EORTC) measure of spiritual well-being for people receiving palliative care for cancer.

    Science.gov (United States)

    Lucette, A; Brédart, A; Vivat, B; Young, T

    2014-03-01

    Spiritual well-being is increasingly recognised as an important aspect of patients' quality of life when living with a potentially life-limiting illness such as cancer. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group is developing a measure for assessing spiritual well-being cross-culturally for people receiving palliative care for cancer. The pilot-testing phase of the study explored potential problems related to the content and administration of a provisional version of this measure. The French version was pilot-tested with 12 patients in a palliative and supportive day care unit in Paris. Participants were asked to complete the measure and the EORTC QLQ-C15-PAL before being interviewed about their responses. The administration of the measure enabled participants to express the difficulties and existential concerns they experienced. The items were not considered intrusive, despite the sensitive topic of the measure. This article considers difficulties with items pertaining to 'religion' and 'spirituality' in the context of French culture. Overall, this measure appears to enhance holistic care, by providing caregivers with a means of broaching spirituality issues, a topic otherwise difficult to discuss in the context of palliative care. © 2013 John Wiley & Sons Ltd.

  2. Fontan fenestration closure and event-free survival.

    Science.gov (United States)

    Imielski, Bartlomiej R; Woods, Ronald K; Mussatto, Kathleen A; Cao, Yumei; Simpson, Pippa M; Tweddell, James S

    2013-01-01

    The purpose of the present study was to evaluate the association of open and closed Fontan fenestration status with event-free survival. All patients who underwent a fenestrated Fontan procedure at our institution from January 1994 through June 2007 were reviewed. Patient information was obtained from the medical records. The patients were assigned to 1 of 2 study groups, open or closed, according to their most recent fenestration status. Clinically relevant morbid events were tabulated, and Kaplan-Meier event analysis was used to create event-free probability curves with log-rank comparisons. A total of 161 patients were classified as open and 51 as closed. The median interval to an event was 1.1 years (interquartile range, 0.1-3.3 years) after the Fontan procedure. The median interval to closure was 1.2 years (interquartile range, 0.7-3.3 years). The median interval to an event was 1.5 years (interquartile range, 0.1-4.6 years) in the closed group and 1.1 years (interquartile range, 0.1-3.3 years) in the open group. Event-free probability analysis revealed no significant difference between the 2 groups (P = .15). The median follow-up arterial oxygen saturation was greater in the closed group (96.0%; interquartile range, 94.0%-97.0%) than in the open group (91.0%; interquartile range, 86.0%-95.0%; P < .0001). Fenestration closure was associated with greater arterial oxygen saturation but not greater event-free survival. The interval to an event was slightly less than the interval to fenestration closure, suggesting potential merit in the evaluation of earlier fenestration closure. Adoption of specific fenestration management guidelines might help improve the overall outcomes and enhance the quality of future studies. Copyright © 2013 The American Association for Thoracic Surgery. Published by Mosby, Inc. All rights reserved.

  3. Palliative Radiotherapy

    International Nuclear Information System (INIS)

    Salinas, J.

    2003-01-01

    Palliative care does not attempt to prolong survival but to the achieve the highest quality of life both for the patient and their family covering their physical, psychological, social and spiritual needs. Radiotherapy (RT), one of the most important therapeutic modalities, has a great significance in palliative medicine for cancer since it attempts to reduce as much as possible the acute reaction associated with the treatment for the patient. (Author)

  4. The impact of religiosity and individual prayer activities on advanced cancer patients' health: is there any difference in function of whether or not receiving palliative anti-neoplastic therapy?

    Science.gov (United States)

    Paiva, Carlos Eduardo; Paiva, Bianca Sakamoto Ribeiro; Yennurajalingam, Sriram; Hui, David

    2014-12-01

    Consecutive patients (n = 221) presenting for initial consultation at a palliative care outpatient clinic were prospectively interviewed and then followed until death. Individual prayer activity (IPA) and global religion scores were associated with quality of life, symptoms, inflammatory markers, and survival. Analyses were adjusted for whether patients were still receiving anti-neoplastic therapies (ANTs) or not. Higher religion scores were associated with lower levels of inflammation in advanced cancer patients still undergoing ANTs. Additionally, higher IPA was an independent good prognostic factor in patients on active ANTs. Further studies are necessary to confirm these findings and to investigate possible biological mechanisms involved.

  5. 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 haloperidol group required less median rescue neuroleptics (2.0 mg) than the placebo + haloperidol group (4.0 mg) (median difference, -1.0 mg [95% CI, -2.0 to 0]; P = .009) and was perceived to be more comfortable by both blinded caregivers and nurses (caregivers: 84% for the lorazepam + haloperidol group vs 37% for the placebo + haloperidol group; mean difference, 47% [95% CI, 14% to 73%], P = .007; nurses: 77% for the lorazepam

  6. Computational modeling of Fontan physiology: at the crossroads of pediatric cardiology and biomedical engineering.

    Science.gov (United States)

    Slesnick, Timothy C; Yoganathan, Ajit P

    2014-08-01

    The Fontan operation has evolved over the last four and a half decades and is now widely applied to patients with various forms of "single ventricle" congenital heart disease. Survival has greatly improved since the early years, but long-term morbidity and mortality continue to occur. Modeling of Fontan geometries, both in vitro and using computational fluid dynamics, has been instrumental in designing novel changes to Fontan's operation, including the application of staged surgical procedures leading to a total cavopulmonary anastomosis, lateral tunnel, extracardiac conduit, and most recently bifurcated Y-graft modifications. In this review, the history of modeling of Fontan physiologies, current state-of-the-art methodologies, and future directions are explored. The application of these techniques to cardiac magnetic resonance imaging to construct patient specific anatomies offers the possibility of individualized surgical planning to optimize hemodynamics, including minimizing power loss, balancing hepatic factor distribution, and ultimately improving patient outcomes.

  7. Gastrointestinal haemorrhage due to lymphangiectasia caused by protein-losing enteropathy in the Fontan circulation.

    Science.gov (United States)

    Gras, Pauline; Gottrand, Frédéric; Godart, François

    2017-10-01

    We report the case of a 14-year-old boy with severe protein-losing enteropathy after Fontan surgery that led to lymphangiectasia, which caused gastrointestinal haemorrhage and required invasive treatment to stop the bleeding. Through this case and a review of the literature on protein-losing enteropathy after Fontan surgery, we highlight a rare and serious presentation of the disease and the difficulties of diagnosis and management.

  8. Surgical outcome of Fontan conversion and arrhythmia surgery: Need a pacemaker?

    Science.gov (United States)

    Terada, Takafumi; Sakurai, Hajime; Nonaka, Toshimichi; Sakurai, Takahisa; Sugiura, Junya; Taneichi, Tetsuyoshi; Ohtsuka, Ryohei

    2014-07-01

    Atrial tachyarrhythmias are frequent complications in the late period after the Fontan procedure, and important risk factors for a poor prognosis. The impact of Fontan conversion and arrhythmia surgery in failed Fontan patients has been described in many reports. We evaluated our experience with Fontan conversion procedures, concomitant arrhythmia surgery, and pacemaker implantation. We reviewed the hospital records of 25 consecutive patients who underwent a Fontan conversion procedure from January 2004 to March 2012. Twenty-four patients had arrhythmia surgery using cryoablation and radiofrequency ablation at the time of conversion. A bilateral atrial maze procedure was performed in 6 patients, right-side maze in 15, and isthmus block in 3. Three patients with a diagnosis of corrected transposition of the great arteries underwent simultaneous pacemaker implantation electively. There was no early death and one late death during a mean follow-up period of 21.2 months. Three tachyarrhythmia recurrences developed, and there were 4 occurrences of sinus bradycardia. Five of these patients required postoperative pacemaker implantation. The mid-term results of Fontan conversion and arrhythmia surgery in our institute were satisfactory. The occurrence of unexpected postoperative pacemaker requirement was high in the patients who underwent a right atrial or bilateral atrial maze procedure. Pacemaker or lead implantation is recommended for patients planned to undergo a right-side or full maze procedure. © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

  9. 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.

  10. 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.

  11. 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.

  12. Skeletal muscle abnormalities and exercise capacity in adults with a Fontan circulation.

    Science.gov (United States)

    Cordina, Rachael; O'Meagher, Shamus; Gould, Haslinda; Rae, Caroline; Kemp, Graham; Pasco, Julie A; Celermajer, David S; Singh, Nalin

    2013-10-01

    The peripheral muscle pump is key in promoting cardiac filling during exercise, especially in subjects who lack a subpulmonary ventricle (the Fontan circulation). A muscle-wasting syndrome exists in acquired heart failure but has not been assessed in Fontan subjects. We sought to investigate whether adults with the Fontan circulation exhibit reduced skeletal muscle mass and/or metabolic abnormalities. Sixteen New York Heart Association Class I/II Fontan adults (30±2 years) underwent cardiopulmonary exercise testing and lean mass quantification with dual x-ray absorptiometry (DXA); eight had calf muscle (31)P magnetic resonance spectroscopy as did eight healthy age-matched and sex-matched controls. DXA results were compared with Australian reference data. Single tertiary referral centre. Peak VO2 was 1.9±0.1 L/min (66±3% of predicted values). Skeletal muscle mass assessed by relative appendicular lean mass index was significantly reduced compared with age-matched and sex-matched reference values (Z-score -1.46±0.22, pskeletal muscle mass correlated with poorer VO2 max (r=0.67, p=0.004). Overall, skeletal muscle mass T-score (derived from comparison with young normal reference mean) was -1.47±0.21; 4/16 Fontan subjects had sarcopenic range muscle wasting (T-score Muscle aerobic capacity, measured by the rate constant (k) of postexercise phosphocreatine resynthesis, was significantly impaired in Fontan adults versus controls (1.48±0.13 vs 2.40±0.33 min(-1), p=0.02). Fontan adults have reduced skeletal muscle mass and intrinsic muscle metabolic abnormalities.

  13. Predicting long-term mortality after Fontan procedures: A risk score based on 6707 patients from 28 studies

    NARCIS (Netherlands)

    Alsaied, Tarek; Bokma, Jouke P.; Engel, Mark E.; Kuijpers, Joey M.; Hanke, Samuel P.; Zuhlke, Liesl; Zhang, Bin; Veldtman, Gruschen R.

    2017-01-01

    Reported long-term outcome measures vary greatly between studies in Fontan patients making comprehensive appraisal of mortality hazard challenging. We sought to create a clinical risk score to assist monitoring of Fontan patients in the outpatient setting. A systematic review was conducted to

  14. Impact of empiric nesiritide or milrinone infusion on early postoperative recovery after Fontan surgery: a randomized, double-blind, placebo-controlled trial.

    Science.gov (United States)

    Costello, John M; Dunbar-Masterson, Carolyn; Allan, Catherine K; Gauvreau, Kimberlee; Newburger, Jane W; McGowan, Francis X; Wessel, David L; Mayer, John E; Salvin, Joshua W; Dionne, Roger E; Laussen, Peter C

    2014-07-01

    We sought to determine whether empirical nesiritide or milrinone would improve the early postoperative course after Fontan surgery. We hypothesized that compared with milrinone or placebo, patients assigned to receive nesiritide would have improved early postoperative outcomes. In a single-center, randomized, double-blinded, placebo-controlled, multi-arm parallel-group clinical trial, patients undergoing primary Fontan surgery were assigned to receive nesiritide, milrinone, or placebo. A loading dose of study drug was administered on cardiopulmonary bypass followed by a continuous infusion for ≥12 hours and ≤5 days after cardiac intensive care unit admission. The primary outcome was days alive and out of the hospital within 30 days of surgery. Secondary outcomes included measures of cardiovascular function, renal function, resource use, and adverse events. Among 106 enrolled subjects, 35, 36, and 35 were randomized to the nesiritide, milrinone, and placebo groups, respectively, and all were analyzed based on intention to treat. Demographics, patient characteristics, and operative factors were similar among treatment groups. No significant treatment group differences were found for median days alive and out of the hospital within 30 days of surgery (nesiritide, 20 [minimum to maximum, 0-24]; milrinone, 18 [0-23]; placebo, 20 [0-23]; P=0.38). Treatment groups did not significantly differ in cardiac index, arrhythmias, peak lactate, inotropic scores, urine output, duration of mechanical ventilation, intensive care or chest tube drainage, or adverse events. Compared with placebo, empirical perioperative nesiritide or milrinone infusions are not associated with improved early clinical outcomes after Fontan surgery. http://www.clinicaltrials.gov. Unique identifier: NCT00543309. © 2014 American Heart Association, Inc.

  15. Burden and outcomes of pressure ulcers in cancer patients receiving the Kerala model of home based palliative care in India: Results from a prospective observational study

    Directory of Open Access Journals (Sweden)

    Biji M Sankaran

    2015-01-01

    Full Text Available Aim: To report the prevalence and outcomes of pressure ulcers (PU seen in a cohort of cancer patients requiring home-based palliative care. Materials and Methods: All patients referred for home care were eligible for this prospective observational study, provided they were living within a distance of 35 km from the institute and gave informed consent. During each visit, caregivers were trained and educated for providing nursing care for the patient. Dressing material for PU care was provided to all patients free of cost and care methods were demonstrated. Factors influencing the occurrence and healing of PUs were analyzed using logistic regression. Duration for healing of PU was calculated using the Kaplan Meier method. P < 0.05 are taken as significant. Results: Twenty-one of 108 (19.4% enrolled patients had PU at the start of homecare services. None of the patients developed new PU during the course of home care. Complete healing of PU was seen in 9 (42.9% patients. The median duration for healing of PU was found to be 56 days. Median expenditure incurred in patients with PU was Rs. 2323.40 with a median daily expenditure of Rs. 77.56. Conclusions: The present model of homecare service delivery was found to be effective in the prevention and management of PUs. The high prevalence of PU in this cohort indicates a need for greater awareness for this complication. Clinical Trial Registry Number: CTRI/2014/03/004477

  16. Palliative radiotherapy in developing countries

    International Nuclear Information System (INIS)

    Allen, B.J.

    2010-01-01

    Full text: The International Agency for Research on Cancer predicts that cancer incidence in developing countries will increase dramatically in the first two decades of this millennium. Already some 80% of cancer patients in developing countries present with incurable disease. [n many cases pain is a severe problem and palliation is needed to improve quality of life as well as extending survival. This paper will consider the physical and clinical aspects of palliative radiotherapy (PRT), choice of radiation modality, alternative approaches to imaging and therapy and cost-benefit considerations. The potential benefits of a dedicated palliative centre include lower cost and therefore more centres, enabling more patients access to regional palliative care. Whilst there is an obvious need for palliative radiotherapy, simple curative treatments could also be managed. C060 radiotherapy has important advantages in developing countries, because of the higher initial cost of a linear accelerator, as well as the need for reliable power supply and the level of skill required by linac technicians and physicists. The beam characteristics of both C060 units and low energy linacs are compared and both are found to be acceptable for palliation. The concept of telemedicine is also discussed, using mobile phones and internet communication to allow rural clinics to receive support from specialists based in the cities, to send images for remote diagnosis and remote dose planning for radiotherapy. (author)

  17. When palliative treatment achieves more than palliation: Instances of long-term survival after palliative radiotherapy

    Directory of Open Access Journals (Sweden)

    Madhup Rastogi

    2012-01-01

    Full Text Available Context: Palliative radiotherapy aims at symptom alleviation and improvement of quality of life. It may be effective in conferring a reasonable quantum of local control, as well as possibly prolonging survival on the short term. However, there can be rare instances where long-term survival, or even cure, results from palliative radiotherapy, which mostly uses sub-therapeutic doses. Aim: To categorize and characterize the patients with long-term survival and/or cure after palliative radiotherapy. Materials and Methods: This study is a retrospective analysis of hospital records of patients treated with palliative radiotherapy from 2001 to 2006 at the Regional Cancer Centre, Shimla. Results: Of the analyzed 963 patients who received palliative radiotherapy, 2.4% (n = 23 survived at least 5 years, with a large majority of these surviving patients (73.9%, n = 17 being free of disease. Conclusions: In addition to providing valuable symptom relief, palliative radiotherapy utilizing sub-therapeutic doses may, in a small proportion of patients, bestow long-term survival, and possibly cure. Rationally, such a favorable, but rare outcome cannot be expected with supportive care alone.

  18. 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.

  19. 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

    a crucial role. Elevated pulmonary vascular resistance has been associated with raised levels of endothelin-1, which are common both before and after Fontan operations. Treatment with endothelin-1 receptor antagonists could theoretically improve cardiopulmonary hemodynamics and exercise capacity. The aim......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...

  20. The role of cardiovascular magnetic resonance in candidates for Fontan operation: Proposal of a new Algorithm

    Directory of Open Access Journals (Sweden)

    Ait-Ali Lamia

    2011-11-01

    Full Text Available Abstract Background To propose a new diagnostic algorithm for candidates for Fontan and identify those who can skip cardiac catheterization (CC. Methods Forty-four candidates for Fontan (median age 4.8 years, range: 2-29 years were prospectively evaluated by trans-thoracic echocardiography (TTE, Cardiovascular magnetic resonance (CMR and CC. Before CC, according to clinical, echo and CMR findings, patients were divided in two groups: Group I comprised 18 patients deemed suitable for Fontan without requiring CC; group II comprised 26 patients indicated for CC either in order to detect more details, or for interventional procedures. Results In Group I ("CC not required" no unexpected new information affecting surgical planning was provided by CC. Conversely, in Group II new information was provided by CC in three patients (0 vs 11.5%, p = 0.35 and in six an interventional procedure was performed. During CC, minor complications occurred in one patient from Group I and in three from Group II (6 vs 14%, p = 0.7. Radiation Dose-Area product was similar in the two groups (Median 20 Gycm2, range: 5-40 vs 26.5 Gycm2, range: 9-270 p = 0.37. All 18 Group I patients and 19 Group II patients underwent a total cavo-pulmonary anastomosis; in the remaining seven group II patients, four were excluded from Fontan; two are awaiting Fontan; one refused the intervention. Conclusion In this paper we propose a new diagnostic algorithm in a pre-Fontan setting. An accurate non-invasive evaluation comprising TTE and CMR could select patients who can skip CC.

  1. The enhancement of hemodynamic performance in Fontan circulation using pain free spontaneous ventilation.

    Science.gov (United States)

    Lofland, G K

    2001-07-01

    Positive pressure ventilation is known to have a deleterious effect on pulmonary blood flow in patients with Fontan physiology. We evaluated the hemodynamic effects of pain free, spontaneous, non-positive pressure ventilation in patients undergoing Fontan staging procedures or completion. Fontan procedures, with creation of low pressure passive pulmonary circulation. Between May 1997 and May 1999 50 consecutive patients undergoing either bi-directional Glenn (BDG, n=23) or completion Fontan (n=27), were managed with early extubation. Anaesthetic management included continuous narcotics, caudal block, epidural block, or hyperbaric spinal. Post-operative management included low dose dopamine (3 mcg/kg per min), nitro-glycerine (0.3 mcg/kg per min) and nitroprusside (0.3 mcg/kg per min). Post-operative management was identical for all patients. Twelve patients were randomly selected to undergo continuous cardiac output and cardiac index (CI) determinations utilizing extra vascular Doppler probes placed on the ascending aorta, allowing for continuous aortic diameter and Doppler wave form velocity recordings. All patients were extubated either in the operating room or within one hour post-operatively. There were no deaths and no complications in the series. Mean length of stay (LOS) for BDG was 4.3+/-0.5 days. Mean LOS for Fontan patients was 11+/-4 days. Mean pulmonary artery pressure (MPAP) fell from 19+/-3.464 pre-extubation to 14+/-3.271 immediately post-extubation, 13.2+/-2.261 6 h post-extubation, and 11.7+/-2.146 12 h post-extubation. All decreases in MPAP post-extubation were significant (P=post-extubation 5.05+/-1.297, 12 h post-extubation 6.225+/-1.19. All increases in CI post-extubation were significant (P=pain free, spontaneous, non-positive pressure ventilation enhances hemodynamic performance in patients with Fontan circulation and clearly improves outcome.

  2. Palliative Care in Romania.

    Science.gov (United States)

    Mosoiu, Daniela; Mitrea, Nicoleta; Dumitrescu, Malina

    2018-02-01

    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 health care 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, five outpatient palliative care clinics, four day care centers, and four 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 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  3. Palliative care in Salima district

    African Journals Online (AJOL)

    On 27th June 2007, Malawi's first dedicated palliative care centre, Ndi Moyo, was officially opened by the Honourable. Marjorie Ngaunje, the then Minister of Health. Over 260 patients have registered since August 2006 when they first started to receive treatment for relief of severe and chronic pain which is frequently related ...

  4. Endoscopic palliation in gastric cancer

    International Nuclear Information System (INIS)

    Valdivieso, Eduardo

    2010-01-01

    The integral search for improved living conditions for those patients with gastric cancer who have not received curative surgical treatment continues to challenge the knowledge, dexterity and ethical foundations of medical teams. The justification for palliative treatment must be based on a thorough consideration of the available options and the particular situation in each case. This article reviews endoscopic therapy with auto expandable prosthetics for palliative treatment of gastric cancer, as well as the scientific evidence that supports its use and the factors that determine its indication.

  5. Palliative care in Argentina: perspectives from a country in crisis.

    Science.gov (United States)

    De Simone, Gustavo G

    2003-01-01

    Argentina is a large South American country with a high prevalence of chronic disease-related mortality and a clear need for implementation of palliative care. Primary concerns related to palliative care are cultural, socio-economic and educational. Increasing poverty, patients and families receiving inadequate information about their diagnosis or prognosis, drug availability and costs, and insufficient knowledge by health care providers are obstacles to palliative care. Palliative care programs are developing throughout the country and methods by which they are meeting their needs are described. Several Argentinean palliative care initiatives are described and the role of the Pallium Latinomérica training program is discussed.

  6. PALLIATIVE CARE ELDERLY PATIENTS WITH SLEEPING DISORDERS ARE POORLY TREATED

    OpenAIRE

    Bellido-Estevez, Inmaculada

    2015-01-01

    Background: Sleep disorders are frequent in patients with advanced cancer receiving palliative-care, especially in elderly patients (1). Sleep disorders during palliative-care may be related with anxiety, opioids related central-sleep apnoea or corticoids therapy between others (2). Our aim was to quantify the effectiveness of hypnotic medication in the sleep quality in advanced cancer receiving palliative-care elderly patients. Material and methods: A descriptive cross-sectional study was...

  7. 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.

  8. 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. PMID:28804708

  9. Trasplante después del Fontan. Aspectos quirúrgicos

    Directory of Open Access Journals (Sweden)

    Juan-Miguel Gil-Jaurena

    2016-09-01

    Conclusiones: Trasplantar a pacientes con Fontan previo es un reto. Podemos anticipar variantes en cada una de las 5 anastomosis previstas. Es recomendable obtener tejido extra del donante (aorta y arco, vena cava superior e innominada, pericardio. Los resultados pueden superponerse a otras series de trasplante cardiaco.

  10. 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...

  11. 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.)

  12. 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.

  13. At-home palliative sedation for end-of-life cancer patients.

    Science.gov (United States)

    Alonso-Babarro, Alberto; Varela-Cerdeira, Maria; Torres-Vigil, Isabel; Rodríguez-Barrientos, Ricardo; Bruera, Eduardo

    2010-07-01

    Using a decision-making and treatment checklist developed to facilitate the at-home palliative sedation process, we assessed the incidence and efficacy of palliative sedation for end-of-life cancer patients with intractable symptoms who died at home. We retrospectively reviewed the medical records of 370 patients who were followed by a palliative home care team. Twenty-nine of 245 patients (12%) who died at home had received palliative sedation. The mean age of the patients who received palliative sedation was 58 +/- 17 years, and the mean age of the patients who did not receive palliative sedation was 69 +/- 15 years (p = 0.002). No other differences were detected between patients who did or did not receive palliative sedation. The most common indications for palliative sedation were delirium (62%) and dyspnea (14%). Twenty-seven patients (93%) received midazolam for palliative sedation (final mean dose of 74 mg), and two (7%) received levomepromazine (final mean dose of 125 mg). The mean time between palliative sedation initiation and time of death was 2.6 days. In 13 of the cases (45%), the palliative sedation decision was made with the patient and his or her family members, and in another 13 patients (45%), the palliative sedation decision was made only with the patient's family members. We concluded that palliative sedation may be used safely and efficaciously to treat dying cancer patients with refractory symptoms at home.

  14. Palliative or Comfort Care

    Science.gov (United States)

    ... is not under control Need help understanding your situation and coordinating care PALLIATIVE CARE Often a team of specialists provides palliative care. The team usually includes: Palliative care doctors and nurses Social workers and chaplains Pharmacists and nutritionists Counselors and others ...

  15. '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.

  16. ‘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

    2016-01-01

    Background: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. Aim: 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. Design: 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. Setting/participants: 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). Results: 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. Conclusions: 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. PMID:26819326

  17. 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.

  18. An international multicenter study comparing arrhythmia prevalence between the intracardiac lateral tunnel and the extracardiac conduit type of Fontan operations.

    Science.gov (United States)

    Balaji, Seshadri; Daga, Ankana; Bradley, David J; Etheridge, Susan P; Law, Ian H; Batra, Anjan S; Sanatani, Shubayan; Singh, Anoop K; Gajewski, Kelly K; Tsao, Sabrina; Singh, Harinder R; Tisma-Dupanovic, Svjetlana; Tateno, Shigeru; Takamuro, Motoki; Nakajima, Hiromichi; Roos-Hesselink, Jolien W; Shah, Maully

    2014-08-01

    The study objective was to determine whether the extracardiac conduit Fontan confers an arrhythmia advantage over the intracardiac lateral tunnel Fontan. This multicenter study of 1271 patients compared bradyarrhythmia (defined as need for pacing) and tachyarrhythmia (defined as needing antiarrhythmic therapy) between 602 patients undergoing the intracardiac Fontan and 669 patients undergoing the extracardiac Fontan. The median age at the time of the Fontan procedure was 2.1 years (interquartile range, 1.6-3.2 years) for the intracardiac group and 3.0 years (interquartile range, 2.4-3.9) for the extracardiac group (P 30 days) bradyarrhythmia occurred in 105 patients (18%) in the intracardiac group and 63 patients (9%) in the extracardiac group (P 30 days) tachyarrhythmia occurred in 58 patients (10%) in the intracardiac group and 23 patients (3%) in the extracardiac group (P factoring time since surgery, more patients in the extracardiac group had early bradycardia (odds ratio, 2.9; 95% confidence interval, 1.8-4.6), with no difference in early tachycardia, late bradycardia, or late tachycardia. Overall arrhythmia burden is similar between the 2 groups, but the extracardiac Fontan group had a higher incidence of early bradyarrhythmias. There was no difference in the incidence of late tachyarrhythmias over time between the 2 operations. Therefore, the type of Fontan performed should be based on factors other than an anticipated reduction in arrhythmia burden from the extracardiac conduit. Copyright © 2014 The American Association for Thoracic Surgery. Published by Mosby, Inc. All rights reserved.

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

    OpenAIRE

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

    2016-01-01

    BACKGROUND: 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. DISCUSSI...

  20. 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.

  1. What Limits Cardiac Performance during Exercise in Normal Subjects and in Healthy Fontan Patients?

    Directory of Open Access Journals (Sweden)

    André La Gerche

    2010-01-01

    Full Text Available Exercise is an important determinant of health but is significantly reduced in the patient with a univentricular circulation. Normal exercise physiology mandates an increase in pulmonary artery pressures which places an increased work demand on the right ventricle (RV. In a biventricular circulation with pathological increases in pulmonary vascular resistance and/or reductions in RV function, exercise-induced augmentation of cardiac output is limited. Left ventricular preload reserve is dependent upon flow through the pulmonary circulation and this requires adequate RV performance. In the Fontan patient, the reasons for exercise intolerance are complex. In those patients with myocardial dysfunction or other pathologies of the circulatory components, it is likely that these abnormalities serve as a limitation to cardiac performance during exercise. However, in the healthy Fontan patient, it may be the absence of a sub-pulmonary pump which limits normal increases in pulmonary pressures, trans-pulmonary flow requirements and cardiac output. If so, performance will be exquisitely dependent on pulmonary vascular resistance. This provides a potential explanation as to why pulmonary vasodilators may improve exercise tolerance. As has recently been demonstrated, these agents may offer an important new treatment strategy which directly addresses the physiological limitations in the Fontan patient.

  2. Quantification of ventricular unloading by 3D echocardiography in single ventricle of left ventricular morphology following superior cavo-pulmonary anastomosis and Fontan completion – a feasibility study

    Directory of Open Access Journals (Sweden)

    Deepa Sasikumar

    2017-01-01

    Conclusions: We provide preliminary information on 3DE volume data of single ventricle of LV morphology and the pattern of unloading after SCPA and Fontan operation. Immediate significant volume unloading occurred after SCPA which tended to catch-up after 3 months, whereas continued fall in ventricular volume with time was noted after Fontan.

  3. 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…

  4. What is Pediatric Palliative Care?

    Science.gov (United States)

    ... FAQ Handout for Patients and Families What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is ... life for both the child and the family. Pediatric palliative care is provided by a team of ...

  5. The international phase 4 validation study of the EORTC QLQ-SWB32: A stand-alone measure of spiritual well-being for people receiving palliative care for cancer

    NARCIS (Netherlands)

    Vivat, B.; Young, T. E.; Winstanley, J.; Arraras, J. I.; Black, K.; Boyle, F.; Bredart, A.; Costantini, A.; Guo, J.; Irarrazaval, M. E.; Kobayashi, K.; Kruizinga, R.; Navarro, M.; Omidvari, S.; Rohde, G. E.; Serpentini, S.; Spry, N.; van Laarhoven, H. W. M.; Yang, G. M.

    2017-01-01

    The EORTC Quality of Life Group has just completed the final phase (field-testing and validation) of an international project to develop a stand-alone measure of spiritual well-being (SWB) for palliative cancer patients. Participants (n = 451)-from 14 countries on four continents; 54% female; 188

  6. Long-term survival, modes of death, and predictors of mortality in patients with Fontan surgery.

    Science.gov (United States)

    Khairy, Paul; Fernandes, Susan M; Mayer, John E; Triedman, John K; Walsh, Edward P; Lock, James E; Landzberg, Michael J

    2008-01-01

    To better define determinants of mortality in patients with univentricular physiology, a database registry was created of patients born in 1985 or earlier with Fontan surgery who were followed up at Children's Hospital Boston. A total of 261 patients, 121 of whom (46.4%) were women, had a first Fontan surgery at a median age of 7.9 years: right atrium-to-pulmonary artery connection in 135 (51.7%); right atrium to right ventricle in 25 (9.6%); and total cavopulmonary connection in 101 (38.7%). Over a median of 12.2 years, 76 (29.1%) died, 5 (1.9%) had cardiac transplantation, 5 (1.9%) had Fontan revision, and 21 (8.0%) had Fontan conversion. Perioperative mortality decreased steadily over time and accounted for 68.4% of all deaths. In early survivors, actuarial freedom from death or transplantation was 93.7%, 89.9%, 87.3%, and 82.6% at 5, 10, 15, and 20 years, respectively, with no significant difference between right atrium to pulmonary artery versus total cavopulmonary connection. Late deaths were classified as sudden in 7 patients (9.2%), thromboembolic in 6 (7.9%), heart failure-related in 5 (6.7%), sepsis in 2 (2.6%), and other in 4 (5.2%). Most sudden deaths were of presumed arrhythmic origin with no identifiable predictor. Independent risk factors for thromboembolic death were lack of antiplatelet or anticoagulant therapy (hazard ratio [HR], 91.6; P=0.0041) and clinically diagnosed intracardiac thrombus (HR, 22.7; P=0.0002). Independent predictors of heart failure death were protein-losing enteropathy (HR, 7.1; P=0.0043), single morphologically right ventricle (HR, 10.5; P=0.0429), and higher right atrial pressure (HR, 1.3 per 1 mm Hg; P=0.0016). In perioperative survivors of Fontan surgery, gradual attrition occurs predominantly from thromboembolic, heart failure-related, and sudden deaths.

  7. Simulation of Ventricular, Cavo-Pulmonary, and Biventricular Ventricular Assist Devices in Failing Fontan.

    Science.gov (United States)

    Di Molfetta, Arianna; Amodeo, Antonio; Fresiello, Libera; Trivella, Maria Giovanna; Iacobelli, Roberta; Pilati, Mara; Ferrari, Gianfranco

    2015-07-01

    Considering the lack of donors, ventricular assist devices (VADs) could be an alternative to heart transplantation for failing Fontan patients, in spite of the lack of experience and the complex anatomy and physiopathology of these patients. Considering the high number of variables that play an important role such as type of Fontan failure, type of VAD connection, and setting (right VAD [RVAD], left VAD [LVAD], or biventricular VAD [BIVAD]), a numerical model could be useful to support clinical decisions. The aim of this article is to develop and test a lumped parameter model of the cardiovascular system simulating and comparing the VAD effects on failing Fontan. Hemodynamic and echocardiographic data of 10 Fontan patients were used to simulate the baseline patients' condition using a dedicated lumped parameter model. Starting from the simulated baseline and for each patient, a systolic dysfunction, a diastolic dysfunction, and an increment of the pulmonary vascular resistance were simulated. Then, for each patient and for each pathology, the RVAD, LVAD, and BIVAD implantations were simulated. The model can reproduce patients' baseline well. In the case of systolic dysfunction, the LVAD unloads the single ventricle and increases the cardiac output (CO) (35%) and the arterial systemic pressure (Pas) (25%). With RVAD, a decrement of inferior vena cava pressure (Pvci) (39%) was observed with 34% increment of CO, but an increment of the single ventricle external work (SVEW). With the BIVAD, an increment of Pas (29%) and CO (37%) was observed. In the case of diastolic dysfunction, the LVAD increases CO (42%) and the RVAD decreases the Pvci, while both increase the SVEW. In the case of pulmonary vascular resistance increment, the highest CO (50%) and Pas (28%) increment is obtained with an RVAD with the highest decrement of Pvci (53%) and an increment of the SVEW but with the lowest VAD power consumption. The use of numerical models could be helpful in this innovative

  8. “Will she live a long happy life?” Parents' concerns for their children with Fontan circulation

    Directory of Open Access Journals (Sweden)

    Karin du Plessis

    2018-03-01

    Full Text Available Background: Families of children at the worst end of the congenital heart disease endure a significant burden which is often not clearly delineated in the clinical literature. We examined the greatest concerns of parents whose children have a Fontan circulation. Methods: Parents (N = 107 of children in the Australian and New Zealand Fontan Registry completed online surveys with open-ended and closed questions. A qualitative method approach incorporating thematic analyses was used. Results: The greatest concerns for parents of a child with a Fontan circulation were centered on fear of death for their child and psychosocial well-being, followed by lesser themes around anti-coagulation use, pregnancy and financial burdens. Conclusions: Fear of death and the psychological well-being of their children were the main parental concerns. It highlights the need to clearly communicate information on outcomes to families, and the need for family-focused psychological interventions to improve the psychosocial functioning of both parents and young people. Keywords: Congenital heart disease, Fontan, Parents of children with a Fontan circulation, Qualitative research

  9. 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

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

    International Nuclear Information System (INIS)

    Prabhu, Sanjay P.; Mahmood, Soran; Sena, Laureen; Lee, Edward Y.

    2009-01-01

    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

  11. 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

    2014-01-01

    at the time of diagnosis are: abnormal enteric protein loss was 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. Conclusion 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. PMID:24757400

  12. 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.

  13. 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...

  14. 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

  15. 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

  16. Echocardiographic characteristics in Fontan patients before the onset of protein-losing enteropathy or plastic bronchitis.

    Science.gov (United States)

    Du Bois, Florian; Stiller, Brigitte; Borth-Bruhns, Thomas; Unseld, Bettina; Kubicki, Rouven; Hoehn, René; Reineker, Katja; Grohmann, Jochen; Fleck, Thilo

    2018-01-01

    It was this study's objective to evaluate the echocardiographic characteristics and flow patterns in abdominal arteries of Fontan patients before the onset of protein-losing enteropathy (PLE) or plastic bronchitis (PB). In this retrospective cohort investigation, we examined 170 Fontan patients from 32 different centers who had undergone echocardiographic and Doppler ultrasound examinations between June 2006 and May 2013. Follow-up questionnaires were completed by 105 patients a median of 5.3 (1.5-8.5) years later to evaluate whether one of the complications had occurred since the examinations. A total of 91 patients never developed PLE or PB ("non-PLE/PB"); they were compared to 14 affected patients. Eight of the 14 patients had already been diagnosed with "present PLE/PB" when examined. Six "future PLE/PB" patients developed those complications later on and were identified on follow-up. The "future PLE/PB" patients presented significantly slower diastolic flow velocities in the celiac artery (0.1 (0.1-0.5) m/s vs 0.3 (0.1-1.0) m/s (P = .04) and in the superior mesenteric artery (0.0 (0.0-0.2) m/s vs 0.2 (0.0-0.6) m/s, P = .02) than the "non-PLE/PB" group. Median resistance indices in the celiac artery were significantly higher (0.9 (0.8-0.9) m/s vs 0.8 (0.6-0.9) m/s, (P = .01)) even before the onset of PLE or PB. An elevated flow resistance in the celiac artery may prevail in Fontan patients before the clinical manifestation of PLE or PB. © 2017 Wiley Periodicals, Inc.

  17. 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...... 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....

  18. Palliative sedation, not slow euthanasia: a prospective, longitudinal study of sedation in Flemish palliative care units.

    Science.gov (United States)

    Claessens, Patricia; Menten, Johan; Schotsmans, Paul; Broeckaert, Bert

    2011-01-01

    Palliative sedation remains a much debated and controversial issue. The limited literature on the topic often fails to answer ethical questions concerning this practice. The aim of this study was to describe the characteristics of patients who are being sedated for refractory symptoms in palliative care units (PCUs) from the time of admission until the day of death. A prospective, longitudinal, descriptive design was used to assess data in eight PCUs. The total sample consisted of 266 patients. Information on demographics, medication, food and fluid intake, decision making, level of consciousness, and symptom experience were gathered by nurses and researchers three times a week. If patients received palliative sedation, extra information was gathered. Of all included patients (n=266), 7.5% received palliative sedation. Sedation started, on average, 2.5 days before death and for half of these patients, the form of sedation changed over time. At the start of sedation, patients were in the end stage of their illness and needed total care. Patients were fully conscious and had very limited oral food or fluid intake. Only three patients received artificial fluids at the start of sedation. Patients reported, on average, two refractory symptoms, the most important ones being pain, fatigue, depression, drowsiness, and loss of feeling of well-being. In all cases, the patient gave consent to start palliative sedation because of increased suffering. This study revealed that palliative sedation is only administered in exceptional cases where refractory suffering is evident and for those patients who are close to the ends of their lives. Moreover, this study supports the argument that palliative sedation has no life-shortening effect. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  19. Poverty Reduction in India through Palliative Care: A Pilot Project.

    Science.gov (United States)

    Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju

    2017-01-01

    EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many

  20. Palliative sedation: from the family perspective.

    Science.gov (United States)

    Vayne-Bossert, Petra; Zulian, Gilbert B

    2013-12-01

    Palliative sedation (PS) is a treatment option in case of refractory symptoms at the end of life. The emotional impact on nurses and doctors has been widely studied. We explore the experience of family members during a PS procedure. An anonymous questionnaire was sent to the closest family members (n = 17) of patients who died while receiving palliative sedation. The response rate was 59% (10 of 17). Nine relatives were sufficiently informed about PS. In all, 70% evaluated the chosen moment for initiation of PS as adequate. All the relatives noticed a significant improvement in the refractory symptom with a mean reduction in the estimated suffering of 6.25 points on a visual analog scale. Palliative sedation should be performed in the best possible way for the patient and his family in order to efficiently reduce a refractory symptom.

  1. The international phase 4 validation study of the EORTC QLQ-SWB32: a stand-alone measure of spiritual wellbeing (SWB) for people receiving palliative care for cancer

    OpenAIRE

    Vivat, B.; Young, T.; Winstanley, J.; Arraras, J.; Black, K.; Boyle, F.; Brédart, A.; Costantini, A.; Guo, J.; Irarrazaval, M. E.; Kobayashi, K.; Kruizinga, R.; Navarro, M.; Omidvari, S.; Rohde, G. E.

    2017-01-01

    The EORTC Quality of Life (QL) Group has just completed the final phase (field-testing and validation) of an international project to develop a stand-alone measure of spiritual wellbeing (SWB) for palliative cancer patients. Participants (n= 451) - from 14 countries on four continents; 54% female; 188 Christian, 50 Muslim, 156 with no religion - completed a provisional 36-item measure of SWB plus the EORTC QLQ-C15-PAL (PAL), then took part in a structured debriefing interview. All items showe...

  2. Cardiac magnetic resonance and the need for routine cardiac catheterization in single ventricle patients prior to Fontan: a comparison of 3 groups: pre-Fontan CMR versus cath evaluation.

    Science.gov (United States)

    Fogel, Mark A; Pawlowski, Thomas W; Whitehead, Kevin K; Harris, Matthew A; Keller, Marc S; Glatz, Andrew C; Zhu, Winnie; Shore, David; Diaz, Laura K; Rome, Jonathan J

    2012-09-18

    This study investigated whether cardiac magnetic resonance (CMR) and echocardiography (echo) can replace catheterization (cath) for routine evaluation prior to Fontan and under what circumstances CMR and cath are used together. Routine cath prior to Fontan has been utilized for years; noninvasive methods, however, may be sufficient. This study reviews clinical data in 119 consecutive patients investigating 3 groups: those who underwent CMR alone (MR; n = 41), cath alone (C; n = 41), or both cath and CMR (C+M; n = 37) prior to Fontan. No clinically significant differences were noted in patient characteristics, hemodynamics, or clinical status prior to or after surgery between the C and MR groups. CMR added information in 82%. There were no discrepant findings between CMR and cath data in the C+M group. Diagnostic success was ≥95% in all groups. Of those undergoing Fontan completion, the C+M group had similar outcomes to C and MR; C and CMR were utilized in combination to assess aortopulmonary collaterals or the need for an intervention or evaluate its success. Echo could not delineate pulmonary arterial anatomy in 46% to 53% of patients. The C+M and C groups were exposed to 6.8 ± 4.1 mSv of radiation. Single ventricle patients not requiring an intervention can undergo successful Fontan completion with CMR and echo alone with similar short-term outcomes to C, which was used as a control, preventing an invasive test and exposure to radiation. CMR can add information in a significant number of patients. Cath and CMR are utilized together for interventions and assessment of aortopulmonary collaterals. Copyright © 2012 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

  3. Paediatric palliative medicine

    African Journals Online (AJOL)

    of health workers to prescribe and/or administer morphine despite the availability of essential ... doses are complex, largely weight related, and side-effect profiles can differ from those of ... psychological, and social distress. • Effective palliative ...

  4. What is palliative care?

    Science.gov (United States)

    ... A Guide to Advance Directives, the Health Care Power of Attorney, and Other Key Documents . Cambridge, MA: Harvard Health Publications. 2013. Oxenham D. Palliative care and pain. In: Walker BR, Colledge NR, Ralston SH, Penman ...

  5. Palliative care - managing pain

    Science.gov (United States)

    ... page, please enable JavaScript. Palliative care is a holistic approach to care that focuses on treating pain ... stressful for you and your family. But with treatment, pain can be managed. How Pain is Measured ...

  6. 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.

  7. Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media.

    Science.gov (United States)

    Claudio, Celeste H; Dizon, Zoelle B; October, Tessie W

    2018-01-01

    Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. A cross-sectional study of "palliative care" search results. Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention "quality of life" and "relief from symptoms and stress." None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.

  8. 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.

  9. Hybrid palliation for critical systemic outflow obstruction: neither rapid stage 1 Norwood nor comprehensive stage 2 mitigate consequences of early risk factors.

    Science.gov (United States)

    Davies, Ryan R; Radtke, Wolfgang; Bhat, Majeed A; Baffa, Jeanne M; Woodford, Edward; Pizarro, Christian

    2015-01-01

    Hybrid palliation with branch pulmonary artery banding (bPAB) has become increasingly common in the early management of patients with critical left ventricular outflow obstruction. Optimal subsequent surgical palliation remains undefined. We retrospectively reviewed patients undergoing initial bPAB for single ventricle physiology with systemic outflow obstruction (2001-2013, n = 37). Patients were stratified by subsequent surgical palliation: stage 1 Norwood (St1N, n = 14), comprehensive stage 2 (CompSt2, n = 11), and none (n = 12). bPAB was performed at a median of 4 days and 2.7-kg, post-bPAB mortality was increased in patients with aortic atresia (odds ratio [OR] = 3.8, 95% confidence interval [CI] = 0.9-15.8) or birth weight <2 kg (OR = 13.8, 95% CI = 1.4-136.4). Palliation strategy did not affect transplant-free survival through second-stage palliation (St1N: 71.4%, CompSt2: 72.7%, P = .9). Among CompSt2 patients, there was a trend toward poorer survival with aortic atresia (0% vs 80%, P = .09); birth weight <2.5 kg was associated with decreased survival (0% vs 89.0%, P = .01). A trend toward lower survival with low birth weight was evident among St1N patients (<2 kg, OR = 0.1, 95% CI = 0.01-1.9, P = .09). CompSt2 mortality occurred on postoperative days 0 and 1. Mortality following St1N occurred at a median of 38.5 days (range = 23.5-104.5). Among survivors of stage 2 palliation, Fontan completion was performed in the same number of patients in each group (St1N: 6/8, 75%, CompSt2: 6/8, 75%). Both St1N and CompSt2 are viable options for subsequent palliation following initial hybrid procedure. Transplant-free survival and eventual Fontan candidacy are similar between groups. Delaying surgical palliation with the CompSt2 did not mitigate the impact of early risk factors such as low birth weight and aortic atresia. Copyright © 2015 The American Association for Thoracic Surgery. Published by Elsevier Inc. All rights reserved.

  10. [Failed transcatheter creation of fenestration in a Fontan patient with original fenestration closed by AngelWings septal occluder: a case report].

    Science.gov (United States)

    Ohno, Atsuko; Hirotaka, Ishido; Kobayashi, Toshiki; Asano, Haruhiko; Kyo, Shunei; Senzaki, Hideaki

    2007-10-01

    The fenestrated Fontan procedure has helped to reduce the mortality and morbidity of pediatric patients who underwent the Fontan operation. We treated a patient (7-year-old, female) who had developed heart failure 1 year after fenestration closure using an AngelWings device, although the patient met the proposed criteria for test occlusion. Hemodynamic evaluation using the ventricular pressure-area relationship revealed that the patient had both systolic and diastolic dysfunction, which were difficult to recognize by conventional hemodynamic indices. We then tried to percutaneously create a fenestration using a Brockenbrough needle, but this procedure failed. The AngelWings device, which may have been covered by pseudointima (composed of fibroelastic tissue), was hard enough to break the Brockenbrough needle. Re-creating a fenestration after device closure in patients after the fenestrated Fontan operation appears to be difficult, so more accurate methods to predict Fontan physiology after fenestration closure are needed.

  11. Palliative Care Development in Mongolia.

    Science.gov (United States)

    Davaasuren, Odontuya; Ferris, Frank D

    2018-02-01

    Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. Systematic reviews and observational studies on palliative care development in Mongolia have taken place over the past 16 years. Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Palliative care is included in the Mongolia's Health Law, Health Insurance Law, Social Welfare Law, National Cancer Control Program, and the National Program for Non-Communicable Diseases, and has approved Palliative Care Standards and Pain Management Guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. Six hospice units in Ulaanbaatar have 50 beds; each of the nine districts and all 21 provinces have up to four to five palliative beds, and there are 36 palliative care units, for a total 190 beds for three million people. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care have been available in Mongolia since 2015. The pharmaceutical company IVCO produces morphine, codeine, pethidine, and oxycodone in Ulaanbaatar. Mongolia has made real progress in integrating palliative care into the health system. Copyright © 2017. Published by Elsevier Inc.

  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. [General practitioner and palliative sedation].

    Science.gov (United States)

    Schweitzer, Bart

    2014-01-01

    Recent publications in Dutch national newspapers on palliative sedation have raised concerns about its use in general practice. There is now evidence that there is no significant increase in the incidence of palliative sedation. Euthanasia requests were pending in 20.8% of the cases in which palliative sedation was performed, but the general practitioners could clearly justify why they made this choice. This is important because it indicates that they are aware of a sharp distinction between euthanasia and palliative sedation. Although the decision to perform palliative sedation was discussed with almost all cancer patients, patient involvement was less present in non-cancer conditions. This may be related to different disease trajectories, but it also indicates that attention should be devoted to earlier identification of patients in need of palliative care. The findings confirm that the practice of palliative sedation by general practitioners largely reflects the recommendations of the Dutch National Guideline on Palliative Sedation.

  14. Psychosocial issues in palliative care

    African Journals Online (AJOL)

    Repro

    work of all involved in palliative care and understanding this will ... palliative care. The quality of life for patients and the manner of ... In palliative care, the creation of a safe space for families to talk is important. Communication ... family finds balance only with, and in your ... those relationships that are signifi- cant for the ...

  15. 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.

  16. Palliative Care Use Among Patients With Solid Cancer Tumors: A National Cancer Data Base Study.

    Science.gov (United States)

    Osagiede, Osayande; Colibaseanu, Dorin T; Spaulding, Aaron C; Frank, Ryan D; Merchea, Amit; Kelley, Scott R; Uitti, Ryan J; Ailawadhi, Sikander

    2018-01-01

    Palliative care has been increasingly recognized as an important part of cancer care but remains underutilized in patients with solid cancers. There is a current gap in knowledge regarding why palliative care is underutilized nationwide. To identify the factors associated with palliative care use among deceased patients with solid cancer tumors. Using the 2016 National Cancer Data Base, we identified deceased patients (2004-2013) with breast, colon, lung, melanoma, and prostate cancer. Data were described as percentages. Associations between palliative care use and patient, facility, and geographic characteristics were evaluated through multivariate logistic regression. A total of 1 840 111 patients were analyzed; 9.6% received palliative care. Palliative care use was higher in the following patient groups: survival >24 months (17% vs 2%), male (54% vs 46%), higher Charlson-Deyo comorbidity score (16% vs 8%), treatment at designated cancer programs (74% vs 71%), lung cancer (76% vs 28%), higher grade cancer (53% vs 24%), and stage IV cancer (59% vs 13%). Patients who lived in communities with a greater percentage of high school degrees had higher odds of receiving palliative care; Central and Pacific regions of the United States had lower odds of palliative care use than the East Coast. Patients with colon, melanoma, or prostate cancer had lower odds of palliative care than patients with breast cancer, whereas those with lung cancer had higher odds. Palliative care use in solid cancer tumors is variable, with a preference for patients with lung cancer, younger age, known insurance status, and higher educational level.

  17. 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.

  18. [Palliative sedation at a university palliative care unit--a descriptive analysis].

    Science.gov (United States)

    Hopprich, A; Günther, L D; Laufenberg-Feldmann, R; Reinholz, U; Weber, M

    2016-04-01

    Palliative sedation (pS) is indicated in the presence of end-stage disease with treatment-refractory symptoms not tolerable for the patient. We investigated the practice of pS at a university palliative care unit. Before starting pS the following data were documented: indication and decision making, type of sedation, life expectancy evaluated by the physician using the palliative prognostic index. Over the time of pS communication skills, depth of sedation, relief in symptoms, substitution of fluid and nutrition and used medications were collected. During evaluation time 99 patients died. 34 patients received pS (34 %). All patients suffered from cancer. Indications for palliative sedation were: terminal restlessness (56 %), dyspnea (39 %), pain (32 %), psychological distress (15 %), agitated delir (9 %), vomiting (3 %) and bleeding (3 %) (multiple nominations possible). In 31 cases (91 %) nurses were included for decision making. In 33 cases continuous sedation were initiated immediately (median duration 27.5 hours). The most applied medication was midazolam (94 %), sometimes combined with neuroleptics (44 %) and propofol (15 %). 91 % of the patients additionally received opioids. Artificial fluid was substituted in two cases. Palliative sedation started in the median 27.5 hours before death. The final physician assessment revealed complete symptom relief in 12 patients (35 %), very strong symptom relief in 20 patients (59 %) and moderate symptom relief in 2 patients (6 %). pS was successfully used as last resort for relief of treatment-refractory symptoms in one third of decedents at the investigated palliative care unit. © Georg Thieme Verlag KG Stuttgart · New York.

  19. The international phase 4 validation study of the EORTC QLQ-SWB32: A stand-alone measure of spiritual well-being for people receiving palliative care for cancer.

    Science.gov (United States)

    Vivat, B; Young, T E; Winstanley, J; Arraras, J I; Black, K; Boyle, F; Bredart, A; Costantini, A; Guo, J; Irarrazaval, M E; Kobayashi, K; Kruizinga, R; Navarro, M; Omidvari, S; Rohde, G E; Serpentini, S; Spry, N; Van Laarhoven, H W M; Yang, G M

    2017-11-01

    The EORTC Quality of Life Group has just completed the final phase (field-testing and validation) of an international project to develop a stand-alone measure of spiritual well-being (SWB) for palliative cancer patients. Participants (n = 451)-from 14 countries on four continents; 54% female; 188 Christian; 50 Muslim; 156 with no religion-completed a provisional 36-item measure of SWB plus the EORTC QLQ-C15-PAL (PAL), then took part in a structured debriefing interview. All items showed good score distribution across response categories. We assessed scale structure using principal component analysis and Rasch analysis, and explored construct validity, and convergent/divergent validity with the PAL. Twenty-two items in four scoring scales (Relationship with Self, Relationships with Others, Relationship with Someone or Something Greater, and Existential) explained 53% of the variance. The measure also includes a global SWB item and nine other items. Scores on the PAL global quality-of-life item and Emotional Functioning scale weakly-moderately correlated with scores on the global SWB item and two of the four SWB scales. This new validated 32-item SWB measure addresses a distinct aspect of quality-of-life, and is now available for use in research and clinical practice, with a role as both a measurement and an intervention tool. © 2017 John Wiley & Sons Ltd.

  20. 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....

  1. 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.

  2. 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.

  3. 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.

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

    International Nuclear Information System (INIS)

    Jarvis, Kelly; Markl, Michael; Schnell, Susanne; Barker, Alex J.; Garcia, Julio; Chowdhary, Varun; Carr, James; Lorenz, Ramona; Rose, Michael; Robinson, Joshua D.; Rigsby, Cynthia K.

    2016-01-01

    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"2=0.50, P=0.02; SVC to LPA: R"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.)

  5. 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.)

  6. 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...

  7. Palliation: Hilar cholangiocarcinoma

    Science.gov (United States)

    Goenka, Mahesh Kr; Goenka, Usha

    2014-01-01

    Hilar cholangiocarcinomas are common tumors of the bile duct that are often unresectable at presentation. Palliation, therefore, remains the goal in the majority of these patients. Palliative treatment is particularly indicated in the presence of cholangitis and pruritus but is often also offered for high-grade jaundice and abdominal pain. Endoscopic drainage by placing stents at endoscopic retrograde cholangio-pancreatography (ERCP) is usually the preferred modality of palliation. However, for advanced disease, percutaneous stenting has been shown to be superior to endoscopic stenting. Endosonography-guided biliary drainage is emerging as an alternative technique, particularly when ERCP is not possible or fails. Metal stents are usually preferred over plastic stents, both for ERCP and for percutaneous biliary drainage. There is no consensus as to whether it is necessary to place multiple stents within advanced hilar blocks or whether unilateral stenting would suffice. However, recent data have suggested that, contrary to previous belief, it is useful to drain more than 50% of the liver volume for favorable long-term results. In the presence of cholangitis, it is beneficial to drain all of the obstructed biliary segments. Surgical bypass plays a limited role in palliation and is offered primarily as a segment III bypass if, during a laparotomy for resection, the tumor is found to be unresectable. Photodynamic therapy and, more recently, radiofrequency ablation have been used as adjuvant therapies to improve the results of biliary stenting. The exact technique to be used for palliation is guided by the extent of the biliary involvement (Bismuth class) and the availability of local expertise. PMID:25232449

  8. 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.

  9. Pediatric Palliative Care at a Glance

    Science.gov (United States)

    ® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...

  10. Family physicians' perspectives regarding palliative radiotherapy

    International Nuclear Information System (INIS)

    Samant, Rajiv S.; Fitzgibbon, Edward; Meng, Joanne; Graham, Ian D.

    2006-01-01

    Purpose: To assess family physicians' views on common indications for palliative radiotherapy and to determine whether this influences patient referral. Methods and materials: A 30-item questionnaire evaluating radiotherapy knowledge and training developed at the Ottawa Regional Cancer Centre (ORCC) was mailed to a random sample of 400 family physicians in eastern Ontario, Canada. The completed surveys were collected and analyzed, and form the basis of this study. Results: A total of 172 completed surveys were received for a net response rate of 50% among practicing family physicians. Almost all of the physicians (97%) had recently seen cancer patients in their offices, with 85% regularly caring for patient with advanced cancer. Fifty-four percent had referred patients in the past for radiotherapy and 53% had contacted a radiation oncologist for advice. Physicians who were more knowledgeable about the common indications for palliative radiotherapy were significantly more likely to refer patients for radiotherapy (P<0.01). Inability to contact a radiation oncologist was correlated with not having referred patients for radiotherapy (P<0.01). Only 10% of the physicians had received radiotherapy education during their formal medical training. Conclusions: Many of the family physicians surveyed were unaware of the effectiveness of radiotherapy in a variety of common palliative situations, and radiotherapy referral was correlated with knowledge about the indications for palliative radiotherapy. This was not surprising given the limited education they received in this area and the limited contact they have had with radiation oncologists. Strategies need to be developed to improve continuing medical education opportunities for family physicians and to facilitate more interaction between these physicians and radiation oncologists

  11. Palliative sedation for intolerable suffering.

    Science.gov (United States)

    Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

    2014-07-01

    The purpose of this review is to provide an update on palliative sedation in palliative and end-of-life care. Palliative sedation is the medical procedure used to deal with refractory symptoms in advanced cancer patients when all other specific approaches have failed. Palliative sedation, in the strictest sense of the term, is a proportionate (proportionate palliative sedation, PPS) and intrinsically variable procedure used on an individual basis to relieve refractory symptoms in terminally ill patients, without the intention of hastening death. Completely separate from any other end-of-life decision and not intended to hasten death, palliative sedation has been shown not to have a detrimental impact on survival. To maintain palliative sedation as a legitimate clinical procedure from any ethical or clinical point of view, it must be limited to the restricted area for which it was conceived, that is, relief from refractory suffering as deemed necessary by a patient and by an experienced palliative care team. In this way, there is no risk of associating palliative sedation with other end-of-life decisions. Close collaboration is needed between oncologists and palliative care physicians for this clinical procedure.

  12. Palliative sedation at home in the Netherlands: a nationwide survey among nurses.

    Science.gov (United States)

    Brinkkemper, Tijn; Klinkenberg, Marianne; Deliens, Luc; Eliel, Miriam; Rietjens, Judith A C; Zuurmond, Wouter W A; Perez, Roberto S G M

    2011-08-01

    This paper is a report of a nationwide study conducted to assess experiences of nurses involved in palliative sedation at home after introduction of a physicians' guideline for palliative sedation. Most studies investigating the practice of palliative sedation focus on physicians' practices and attitudes. However, little is known about experiences and attitudes of nurses. A web-based structured questionnaire was offered to 387 nurses providing medical technical care in 2007, assessing their experiences concerning decision-making, treatment policy and communication, focussing on the last patient receiving palliative sedation. The questionnaire was filled out by 201 nurses (response rate 52%). The majority of respondents agreed with the indication for palliative sedation. However, 21% reported to have refused carrying out a palliative sedation in the preceding year. The general practitioner was not present at the start of palliative sedation in a third of the cases, but was available when needed. The sedation was considered insufficiently effective by 42% of the respondents. According to a third of the respondents, the level of sedation was not related to the required level of symptom relief nor were changes in dosage based on the severity of symptoms. Although the guideline for palliative sedation appears to be followed adequately in the majority of cases with respect to indication for palliative sedation and reportage. The survey findings revealed shortcomings in medication policy, communication, medical control over the start and continued monitoring of palliative sedation. © 2011 The Authors. Journal of Advanced Nursing © 2011 Blackwell Publishing Ltd.

  13. 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…

  14. 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

  15. 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

  16. Palliative sedation in nursing anesthesia.

    Science.gov (United States)

    Wolf, Michael T

    2013-04-01

    Palliative sedation is a technique of providing a sedative for end-of-life care to patients with intractable pain. The literature discusses the techniques and use of palliative sedation. Numerous articles have been written regarding the issues surrounding its use, but no literature has discussed the prescription or administration of palliative sedation by a nurse anesthetist. By understanding the concept and ethics involved in its use and providing nursing care that is theory based, the author argues that the involvement of nursing anesthesia is appropriate and within the scope of practice. Few other healthcare disciplines can provide the patient care and empirical knowledge that is imperative in the care of the dying patient. This article discusses the concept and ethics of palliative sedation and presents a case of providing palliative sedation to a terminally ill patient by an experienced nurse anesthetist. Palliative sedation should be understood, embraced, and utilized as an area of expertise suited for nursing anesthesia.

  17. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category ... Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,364 views 3:29 Perinatal Palliative Care - ...

  18. A Review of Palliative Sedation.

    Science.gov (United States)

    Bobb, Barton

    2016-09-01

    Palliative sedation has become a standard practice to treat refractory symptoms at end-of-life. Dyspnea and delirium are the two most commonly treated symptoms. The medications used in palliative sedation are usually benzodiazepines, barbiturates, antipsychotics, and/or anesthetics. Some ethical considerations remain, especially surrounding the use of palliative sedation in psychological distress and existential suffering. Copyright © 2016 Elsevier Inc. All rights reserved.

  19. Palliative Sedation at Home

    Science.gov (United States)

    Barathi, B

    2012-01-01

    Patients with advanced cancer often suffer from multiple intractable physical symptoms. Though majority of the symptoms can be controlled, in some of the patients these symptoms remain refractory and uncontrolled till the end. Palliative sedation (PS) is one of the ways to relieve intractable suffering of the dying cancer patients. The main concern while using PS is its life-shortening effect. This case report describes the feasibility of administering PS in Indian home settings. PMID:22837615

  20. Palliative sedation at home

    Directory of Open Access Journals (Sweden)

    B Barathi

    2015-04-01

    Full Text Available Patients with advanced cancer often suffer from multiple intractable physical symptoms. Though majority of the symptoms can be controlled, in some of the patients these symptoms remain refractory and uncontrolled till the end. Palliative sedation (PS is one of the ways to relieve intractable suffering of the dying cancer patients. The main concern while using PS is its life-shortening effect. This case report describes the feasibility of administering PS in Indian home settings.

  1. Palliative and low cost radiotherapy in developing countries

    International Nuclear Information System (INIS)

    Allen, Barry; Hussein, S.M.A.

    2011-01-01

    Full text: The International Agency for Research on Cancer predicts that cancer incidence in developing countries will increase dramatically in the first two decades of this millennium. Already some 80% of cancer patients in developing countries present with incurable disease. In many cases pain is a severe problem and palliation is needed to improve quality of life as well as extending survival. This paper will consider the physical and clinical aspects of palliative radiotherapy (PRT), choice of radiation modality, alternative approaches to imaging and therapy and cost-benefit considerations. The potential benefits of a dedicated palliative care centre include lower cost and therefore more centres, enabling more patients access to regional palliative care. Simple curative treatments could also be managed. Co60 radiotherapy has important advantages in developing countries, because of the higher initial cost of a linear accelerator, as well as the need for reliable power supply and the level of skill required by linac technicians and physicists. The beam characteristics of both Co60 units and low energy linacs are compared and both are found to be acceptable for palliation. The role of palliative and low cost radiotherapy in Bangladesh is reviewed. The concept of telemedicine is also discussed, using mobile phones and internet communication to allow rural clinics to receive support from specialists based in the cities, to send images for remote diagnosis and remote dose planning for radiotherapy.

  2. Palliative sedation in advanced cancer patients hospitalized in a specialized palliative care unit.

    Science.gov (United States)

    Parra Palacio, Santiago; Giraldo Hoyos, Clara Elisa; Arias Rodríguez, Camilo; Mejía Arrieta, Daniel; Vargas Gómez, John Jairo; Krikorian, Alicia

    2018-03-29

    To describe the practice of palliative sedation (PS) in patients with advanced cancer in a specialized palliative care (PC) unit in Colombia. Descriptive prospective study including all adults with cancer hospitalized under PS in a cancer institute between January and July 2015 in Colombia. Variables examined were diagnosis, physical functioning, symptoms at the start of sedation, medications and dosages used, and type, level, and time of sedation. Descriptive and correlational statistics were obtained. Sixty-six patients were included, 70% of which were women. The patients had an average age of 61 years (range 24-87), and 74% had a Karnofsky Index (KI) of 50% or less. The most frequent diagnosis was breast cancer (22%), and 82% had metastatic cancer. The prevalence of palliative sedation was 2% and the most common symptoms indicating it were dyspnea (59%), delirium (45%), and pain (32%). All patients received midazolam as a sedative. The average time between the interval start and culmination of sedation was 44 h. There was a significant and inverse relationship between functionality and time under sedation. Palliative sedation is a valid therapeutic option for refractory symptoms causing suffering. The results correspond to international reports and guidelines, which suggests that PS is tailored to the needs of the individual patient while maintaining a high scientific standard, even in a context where PC is under development. However, further development of strategies and clear indications towards the use of PS in Colombia are needed, given its still scarce use.

  3. Palliative radiotherapy in plasma cell myeloma

    International Nuclear Information System (INIS)

    Adamietz, I.A.; Schoeber, C.; Schulte, R.W.M.; Renner, K.; Peest, D.

    1991-01-01

    Pain symptoms caused by bone lesions of multiple myeloma can be relieved by a local irradiation treatment. To estimate the influence of systemic treatment on the palliative effect of local radiotherapy the records of 70 myeloma patients treated with chemotherapy combined with or followed by local irradiation were reviewed. The local response rate, defined as complete pain relief at the irradiated site, was 80 percent in patients receiving irradiation during chemotherapy (melphalan and prednisone) and this palliative effect endured 31.8+-3.6 months. If irradiation was started in the period without systemic treatment the local response rate was 39.6 percent and lasted 24.8+-17.9 months. In sites treated with more than one radiotherapy course 94 percent response after the 1st treatment, 56 percent after the 2nd and no response after the 3rd was achieved. The duration of local pain control was positively related to the applied radiation dose. It is concluded that irradiation during concomitant chemotherapy is superior to radiotherapy performed in a period without systemic treatment. Local long-term palliation can only be achieved by a sufficient high radiation dose. (author). 24 refs.; 2 figs.; 2 tabs

  4. Palliative chemotherapy: The perspectives and experiences of south african nurses

    Directory of Open Access Journals (Sweden)

    Johanna Elizabeth Maree

    2018-01-01

    Full Text Available Objective: The objective of this study was to describe the perspectives and experiences of South African nurses caring for patients receiving palliative chemotherapy. Methods: A qualitative descriptive design was used and purposive sampling allowed us to select 11 nurses practising in a private ambulatory cancer care center in Port Elizabeth. In-depth interviews, guided by three broad themes were conducted and analyzed using qualitative content analyses. Data saturation determined the sample size. Results: Two themes emerged from the data – the patients cling to hope and the positive influence of palliative chemotherapy. The participants believed that patients consenting to palliative chemotherapy were clinging to false hope. They were also of the opinion that family members pressurize patients to consent to treatment. The participants experienced palliative chemotherapy positively, especially when an improvement in the patients' quality of life or pain relief was evident. Fatigue was highlighted as the major side effect, but it did not temper the participants' positive attitudes toward the treatment. Conclusions: Although the participants believed that patients cling to hope and consent to palliative chemotherapy because they hope to be cured, they experienced the treatment as positive. For them, the improvement in pain and quality of life outweighed the side effects the patients experienced. The positive attitude patients upheld while receiving this treatment encouraged them. Nurses should gain more knowledge about the meaning, people living with advanced cancer, attach to hope to prevent them from interpreting patients' hope as denial and false.

  5. 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

    2017-12-01

    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

  6. 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.

  7. 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.

  8. 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 ...

  9. 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

  10. 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.

  11. Continuous palliative sedation for cancer and noncancer patients.

    Science.gov (United States)

    Swart, Siebe J; Rietjens, Judith A C; van Zuylen, Lia; Zuurmond, Wouter W A; Perez, Roberto S G M; van der Maas, Paul J; van Delden, Johannes J M; van der Heide, Agnes

    2012-02-01

    Palliative care is often focused on cancer patients. Palliative sedation at the end of life is an intervention to address severe suffering in the last stage of life. To study the practice of continuous palliative sedation for both cancer and noncancer patients. In 2008, a structured questionnaire was sent to 1580 physicians regarding their last patient receiving continuous sedation until death. A total of 606 physicians (38%) filled out the questionnaire, of whom 370 (61%) reported on their last case of continuous sedation (cancer patients: n=282 [76%] and noncancer patients: n=88 [24%]). More often, noncancer patients were older, female, and not fully competent. Dyspnea (odds ratio [OR]=2.13; 95% confidence interval [CI]: 1.22, 3.72) and psychological exhaustion (OR=2.64; 95% CI: 1.26, 5.55) were more often a decisive indication for continuous sedation for these patients. A palliative care team was consulted less often for noncancer patients (OR=0.45; 95% CI: 0.21, 0.96). Also, preceding sedation, euthanasia was discussed less often with noncancer patients (OR=0.42; 95% CI: 0.24, 0.73), whereas their relatives more often initiated discussion about euthanasia than relatives of cancer patients (OR=3.75; 95% CI: 1.26, 11.20). The practice of continuous palliative sedation in patients dying of cancer differs from patients dying of other diseases. These differences seem to be related to the less predictable course of noncancer diseases, which may reduce physicians' awareness of the imminence of death. Increased attention to noncancer diseases in palliative care practice and research is, therefore, crucial as is more attention to the potential benefits of palliative care consultation. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  12. 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

  13. 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.

  14. Team Networking in Palliative Care

    Science.gov (United States)

    Spruyt, Odette

    2011-01-01

    “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. PMID:21811361

  15. 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.

  16. [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

  17. Assessing palliative care needs: views of patients, informal carers and healthcare professionals.

    Science.gov (United States)

    McIlfatrick, Sonja

    2007-01-01

    This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.

  18. Palliative care - shortness of breath

    Science.gov (United States)

    ... page, please enable JavaScript. Palliative care is a holistic approach to care that focuses on treating pain ... the cause will help the team decide the treatment. The nurse may check how much oxygen is ...

  19. Hospice and Palliative Nurses Association

    Science.gov (United States)

    ... Press Release Patients & Families About Serious Illness Certified Nurses are Everywhere Advocacy Palliative Nursing Summit Recent Activity ... Principles State Ambassadors Advocacy Resources Healthcare Resources Certified Nurses Day Certified Nurses are Everywhere Certification is Transformational ...

  20. Palliative care in advanced HIV

    African Journals Online (AJOL)

    Repro

    FEATURES OF PALLIATIVE CARE. IN AIDS ... rent infection e.g. IV ampho- tericin B on an in-patient ... nurses for case management, to communicate ... evaluation — an ongoing process of assessment, to .... Rectal, subcutaneous, intravenous.

  1. Hepatic blood flow distribution and performance in conventional and novel Y-graft Fontan geometries: a case series computational fluid dynamics study.

    Science.gov (United States)

    Yang, Weiguang; Vignon-Clementel, Irene E; Troianowski, Guillaume; Reddy, V Mohan; Feinstein, Jeffrey A; Marsden, Alison L

    2012-05-01

    A novel Y-shaped baffle has been proposed for the Fontan operation with promising initial results. However, previous studies have relied either on idealized models or a single patient-specific model. The objective of this study is to comprehensively compare the hemodynamic performance and hepatic blood flow distribution of the Y-graft Fontan baffle with 2 current designs using multiple patient-specific models. Y-shaped and tube-shaped grafts were virtually implanted into 5 patient-specific Glenn models forming 3 types of Fontan geometries: Y-graft, T-junction, and offset. Unsteady flow simulations were performed at rest and at varying exercise conditions. The hepatic flow distribution between the right and left lungs was carefully quantified using a particle tracking method. Other physiologically relevant parameters such as energy dissipation, superior vena cava pressure, and wall shear stress were evaluated. The Fontan geometry significantly influences the hepatic flow distribution. The Y-graft design improves the hepatic flow distribution effectively in 4 of 5 patients, whereas the T-junction and offset designs may skew as much as 97% of hepatic flow to 1 lung in 2 cases. Sensitivity studies show that changes in pulmonary flow split can affect the hepatic flow distribution dramatically but that some Y-graft and T-junction designs are relatively less sensitive than offset designs. The Y-graft design offers moderate improvements over the traditional designs in power loss and superior vena cava pressure in all patients. The Y-graft Fontan design achieves overall superior hemodynamic performance compared with traditional designs. However, the results emphasize that no one-size-fits-all solution is available that will universally benefit all patients and that designs should be customized for individual patients before clinical application. Copyright © 2012 The American Association for Thoracic Surgery. Published by Mosby, Inc. All rights reserved.

  2. Palliative care guidelines in oncology

    International Nuclear Information System (INIS)

    Krizanova, K.

    2006-01-01

    Palliative care has its roots in hospice movement arising in the 1970s in Europe and later also in America. From its beginning it has had connection with patients in terminal phase of cancer disease who suffered from many serious symptoms. Nowadays palliative care is also being provided to patients in terminal phase of certain neurological disorders, AIDS, exceptionally for patients with heart, lung or kidney failure. It has become part of modern medicine and of good clinical practice. (author)

  3. 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.

  4. Palliative sedation: a focus group study on the experiences of relatives.

    Science.gov (United States)

    Bruinsma, Sophie; Rietjens, Judith; van der Heide, Agnes

    2013-04-01

    Most studies that have investigated the practice of palliative sedation have focused on physicians' practices and attitudes. The aim of this study was to explore relatives' experiences with palliative sedation and to gain more insight in positive and negative elements in their evaluation of palliative sedation. Focus groups and individual interviews. Various care settings in the Netherlands. A total of 14 relatives of patients who received palliative sedation until death participated. Most relatives evaluated the provision of palliative sedation of their dying family member positively. Positive experiences were related to: the beneficial impact of palliative sedation on the patient's suffering, the opportunity that was offered to prepare for the patient's death, their involvement in the decision-making and care for the patient, and the pleasant care environment. However, the majority of the relatives were unsatisfied with one or more aspects of how information was being provided for. Some relatives were frustrated about the fact that nurses were not authorized to make decisions about the care for the patient and about the absence of physicians during weekends. None of the relatives mentioned the loss of the ability to communicate with the patient during the sedation and the possibility of "hastening death" as disadvantages of palliative sedation. Relatives tend to evaluate the provision of palliative sedation to their severely suffering family member positively because it contributes to a peaceful dying process. However, relatives indicated discontent with how information was being provided and with the communication in general.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. Can elearning be used to teach palliative care? - medical students' acceptance, knowledge, and self-estimation of competence in palliative care after elearning.

    Science.gov (United States)

    Schulz-Quach, Christian; Wenzel-Meyburg, Ursula; Fetz, Katharina

    2018-04-27

    Undergraduate palliative care education (UPCE) was mandatorily incorporated in medical education in Germany in 2009. Implementation of the new cross-sectional examination subject of palliative care (QB13) continues to be a major challenge for medical schools. It is clear that there is a need among students for more UPCE. On the other hand, there is a lack of teaching resources and patient availabilities for the practical lessons. Digital media and elearning might be one solution to this problem. The primary objective of this study is to evaluate the elearning course Palliative Care Basics, with regard to students' acceptance of this teaching method and their performance in the written examination on the topic of palliative care. In addition, students' self-estimation in competence in palliative care was assessed. To investigate students' acceptance of the elearning course Palliative Care Basics, we conducted a cross-sectional study that is appropriate for proof-of-concept evaluation. The sample consisted of three cohorts of medical students of Heinrich Heine University Dusseldorf (N = 670). The acceptance of the elearning approach was investigated by means of the standard evaluation of Heinrich Heine University. The effect of elearning on students' self-estimation in palliative care competencies was measured by means of the German revised version of the Program in Palliative Care Education and Practice Questionnaire (PCEP-GR). The elearning course Palliative Care Basics was well-received by medical students. The data yielded no significant effects of the elearning course on students' self-estimation in palliative care competencies. There was a trend of the elearning course having a positive effect on the mark in written exam. Elearning is a promising approach in UPCE and well-accepted by medical students. It may be able to increase students' knowledge in palliative care. However, it is likely that there are other approaches needed to change students' self

  10. Palliative Care Specialist Consultation Is Associated With Supportive Care Quality in Advanced Cancer.

    Science.gov (United States)

    Walling, Anne M; Tisnado, Diana; Ettner, Susan L; Asch, Steven M; Dy, Sydney M; Pantoja, Philip; Lee, Martin; Ahluwalia, Sangeeta C; Schreibeis-Baum, Hannah; Malin, Jennifer L; Lorenz, Karl A

    2016-10-01

    Although recent randomized controlled trials support early palliative care for patients with advanced cancer, the specific processes of care associated with these findings and whether these improvements can be replicated in the broader health care system are uncertain. The aim of this study was to evaluate the occurrence of palliative care consultation and its association with specific processes of supportive care in a national cohort of Veterans using the Cancer Quality ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) measures. We abstracted data from 719 patients' medical records diagnosed with advanced lung, colorectal, or pancreatic cancer in 2008 over a period of three years or until death who received care in the Veterans Affairs Health System to evaluate the association of palliative care specialty consultation with the quality of supportive care overall and by domain using a multivariate regression model. All but 54 of 719 patients died within three years and 293 received at least one palliative care consult. Patients evaluated by a palliative care specialist at diagnosis scored seven percentage points higher overall (P specialist consultation is associated with better quality of supportive care in three advanced cancers, predominantly driven by improvements in information and care planning. This study supports the effectiveness of early palliative care consultation in three common advanced cancers within the Veterans Affairs Health System and provides a greater understanding of what care processes palliative care teams influence. Published by Elsevier Inc.

  11. 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.

  12. 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.

  13. A process evaluation of systematic risk and needs assessment for caregivers in specialised palliative care

    DEFF Research Database (Denmark)

    Thomsen, Kia Toft; Guldin, Mai-Britt; Nielsen, Mette Kjærgaard

    2017-01-01

    the feasibility of an intervention based on key elements of the "Bereavement support standards for specialist palliative care services" in a Danish specialised palliative home care team. We followed the UK Medical Research Council's guidelines for the process evaluation of complex interventions. The intervention...... was established according to the intervention blueprint for 62% of caregivers receiving targeted support. After managing initial challenges, palliative care staff reported that the intervention was useful and acceptable. CONCLUSION: The intervention proved feasible and useful. Still, we identified barriers...

  14. 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 ...

  15. Quantitative echocardiographic measures in the assessment of single ventricle function post-Fontan: Incorporation into routine clinical practice.

    Science.gov (United States)

    Rios, Rodrigo; Ginde, Salil; Saudek, David; Loomba, Rohit S; Stelter, Jessica; Frommelt, Peter

    2017-01-01

    Quantitative echocardiographic measurements of single ventricular (SV) function have not been incorporated into routine clinical practice. A clinical protocol, which included quantitative measurements of SV deformation (global circumferential and longitudinal strain and strain rate), standard deviation of time to peak systolic strain, myocardial performance index (MPI), dP/dT from an atrioventricular valve regurgitant jet, and superior mesenteric artery resistance index, was instituted for all patients with a history of Fontan procedure undergoing echocardiography. All measures were performed real time during clinically indicated studies and were included in clinical reports. A total of 100 consecutive patients (mean age = 11.95±6.8 years, range 17 months-31.3 years) completed the protocol between September 1, 2014 to April 29, 2015. Deformation measures were completed in 100% of the studies, MPI in 93%, dP/dT in 55%, and superior mesenteric artery Doppler in 82%. The studies were reviewed to assess for efficiency in completing the protocol. The average time for image acquisition was 27.4±8.8 (range 10-62 minutes). The average time to perform deformation measures was 10.8±5.5 minutes (range 5-35 minutes) and time from beginning of imaging to report completion was 53.4±13.7 minutes (range 27-107 minutes). There was excellent inter-observer reliability when deformation indices were blindly repeated. Patients with a single left ventricle had significantly higher circumferential strain and strain rate, longitudinal strain and strain rate, and dP/dT compared to a single right ventricle. There were no differences in quantitative indices of ventricular function between patients 10 years post-Fontan. Advanced quantitative assessment of SV function post-Fontan can be consistently and efficiently performed real time during clinically indicated echocardiograms with excellent reliability. © 2016, Wiley Periodicals, Inc.

  16. 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.

  17. Palliative Care Scorecard.

    Science.gov (United States)

    Kittelson, Sheri; Pierce, Read; Youngwerth, Jeanie

    2017-05-01

    In response to poor healthcare quality outcomes and rising costs, healthcare reform triple aim has increased requirements for providers to demonstrate value to payers, partners, and the public. Electronically automating measurement of the meaningful impact of palliative care (PC) programs on clinical, operational, and financial systems over time is imperative to the success of the field and the goal of development of this automated PC scorecard. The scorecard was organized into a format of quality measures identified by the Measuring What Matters (MWM) project that are defined as important to the team, automatically extracted from the electronic health record, valid, and can be impacted over time. The scorecard was initially created using University of Florida Health (UF) data, a new PC program, and successfully applied and implemented at University of Colorado Anschutz Medical Campus (CU), a second institution with a mature PC program. Clinical metrics are organized in the scorecard based on MWM and described in terms of the metric definition, rationale for selection, measure type (structure, process, or outcome), and whether this represents a direct or proxy measure. The process of constructing the scorecard helped identify areas within both systems for potential improvement in team structure, clinical processes, and outcomes. In addition, by automating data extraction, the scorecard decreases costs associated with manual data entry and extraction, freeing clinical staff to care for patients and increasing the value of PC delivered to patients.

  18. American Academy of Hospice and Palliative Medicine

    Science.gov (United States)

    ... Getting Involved Communities Advanced Lung Disease Forum Psychiatry, Psychology, Mental Health Forum Social Work Forum SIG Instructions ... MOC/OCC Workforce Study Global Palliative Care About History Position Statements Access to Palliative Care and Hospice ...

  19. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 26,045 views 5:39 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: ...

  20. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... The Keeney Family discuss pediatric palliative care - Duration: 12:07. Hospice of the Western Reserve 12,073 views 12:07 Perinatal Palliative Care - The Zimmer Family Story - ...

  1. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  2. Prevalence of hyponatremia in palliative care patients

    Directory of Open Access Journals (Sweden)

    Shoba Nair

    2016-01-01

    Conclusions: Prevalence of hyponatremia is significant in palliative care patients. A prospective study looking at the causes and clinical outcomes associated with hyponatremia in palliative care patients is needed.

  3. 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...

  4. 'Palliative sedation'? A retrospective cohort study on the use and labelling of continuously administered sedatives on a palliative care unit.

    Science.gov (United States)

    Schildmann, Eva; Pörnbacher, Sebastian; Kalies, Helen; Bausewein, Claudia

    2018-03-01

    Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'. To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palliative care unit. Retrospective cohort study, using medical records. Explorative statistical analysis (SPSS 23). Patients who died on a palliative care unit from August 2014 to July 2015. Sedatives recorded were benzodiazepines, levomepromazine, haloperidol ⩾5 mg/day and propofol. Of the 192 patients, 149 (78%) patients received continuous sedatives within the last week of life. The prevalence of delirium/agitation was significantly higher in patients with continuous sedatives compared to those without continuous sedatives at admission to the unit (35% vs 16%, p = 0.02) and on the day before death (58% vs 40%, p = 0.04). The term '(palliative) sedation' was used in the records for 22 of 149 (15%) patients with continuous sedatives. These patients had significantly higher total daily midazolam doses 2 days before death (median (range), 15.0 (6.0-185.0) mg vs 11.5 (1.0-70.0) mg, p = 0.04) and on the day of death (median (range), 19.5 (7.5-240.0) mg vs 12.5 (2.0-65.0) mg, p = 0.01). The dose range was large in both groups. The prevalence of delirium/agitation was associated with the administration of continuous sedatives. There was no consistent pattern regarding labelling the use of continuous sedatives as '(palliative) sedation'. Multicentre mixed-methods research is needed for a better characterization of sedation practices in palliative care.

  5. 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.

  6. Flemish Palliative-Care Nurses’ Attitudes to Palliative Sedation: Results of a Quantitative Study

    OpenAIRE

    Gielen, Joris; Van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert

    2012-01-01

    Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses’ attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n=415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated pa...

  7. Endoscopic palliation of malignant dysphagia: a challenging task in inoperable oesophageal cancer

    Directory of Open Access Journals (Sweden)

    Mylvaganam S

    2006-07-01

    Full Text Available Abstract Background The main goal when managing patients with inoperable oesophageal cancer is to restore and maintain their oral nutrition. The aim of the present study was to assess the value of endoscopic palliation of dysphagia in patients with oesophageal cancer, who either due to advanced stage of the disease or co-morbidity are not suitable for surgery. Patients and methods All the endoscopic palliative procedures performed over a 5-year period in our unit were retrospectively reviewed. Dilatation and insertion of self-expandable metal stents (SEMS were mainly used for tight circumferential strictures whilst ablation with Nd-YAG laser was used for exophytic lesions. All procedures were performed under sedation. Results Overall 249 palliative procedures were performed in 59 men and 40 women, with a median age of 73 years (range 35 – 93. The median number of sessions per patient was 2 (range 1 – 13 sessions. Palliation involved laser ablation alone in 24%, stent insertion alone in 22% and dilatation alone in 13% of the patients. In 41% of the patients, a combination of the above palliative techniques was applied. A total of 45 SEMS were inserted. One third of the patients did not receive any other palliative treatment, whilst the rest received chemotherapy, radiotherapy or chemoradiotherapy. Swallowing was maintained in all patients up to death. Four oesophageal perforations were encountered; two were fatal whilst the other two were successfully treated with covered stent insertion and conservative treatment. The median survival from diagnosis was 10.5 months (range 0.5–83 months and the median survival from 1st palliation was 5 months (range 0.5–68.5 months. Conclusion Endoscopic interventions are effective and relatively safe palliative modalities for patients with oesophageal cancer. It is possible to adequately palliate almost all cases of malignant dysphagia. This is achieved by expertise in combination treatment.

  8. Books Received

    Indian Academy of Sciences (India)

    Home; Journals; Resonance – Journal of Science Education. Books Received. Articles in Resonance – Journal of Science Education. Volume 1 Issue 1 January 1996 pp 118-118 Books Received. Books Received · More Details Fulltext PDF. Volume 1 Issue 2 February 1996 pp 120-120 Books Received. Books Received.

  9. AngioVac Aspiration for Paradoxical Emboli Protection through a Fenestrated Fontan During Central Venous Thrombus Manipulation

    Energy Technology Data Exchange (ETDEWEB)

    Al-Hakim, Ramsey, E-mail: ralhakim@mednet.ucla.edu [University of California, Department of Radiology, Division of Interventional Radiology (United States); Patel, Komal, E-mail: kdpatel@mednet.ucla.edu [University of California, Department of Anesthesiology, Division of Cardiothoracic Anesthesiology (United States); Moriarty, John M., E-mail: jmoriarty@mednet.ucla.edu [University of California, Department of Radiology, Division of Interventional Radiology (United States)

    2015-06-15

    This case reports describes a 39-year-old female with a history of surgically repaired hypoplastic left heart syndrome who presented with a left peripherally inserted central catheter (PICC) with associated large volume subclavian and brachiocephalic vein thrombus. Due to the presence of a right-to-left shunt via a fenestrated Fontan, there was clinical concern for a paradoxical embolism during removal of the PICC. The AngioVac aspiration system was successfully utilized to aspirate thromboemboli from the level of the proximal Glenn shunt during manipulation and removal of the PICC. This is the first reported case to demonstrate the safe and effective use of the AngioVac aspiration system for protection of paradoxical emboli through a cardiac right-to-left shunt during a procedure at high risk for thromboembolism.

  10. 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.

  11. Palliative pharmacological sedation for terminally ill adults.

    Science.gov (United States)

    Beller, Elaine M; van Driel, Mieke L; McGregor, Leanne; Truong, Shani; Mitchell, Geoffrey

    2015-01-02

    outcomes narratively. The searches resulted in 14 included studies, involving 4167 adults, of whom 1137 received palliative sedation. More than 95% of people had cancer. No studies were randomised or quasi-randomised. All were consecutive case series, with only three having prospective data collection. Risk of bias was high, due to lack of randomisation. No studies measured quality of life or participant well-being, which was the primary outcome of the review. Five studies measured symptom control, using four different methods, so pooling was not possible. The results demonstrated that despite sedation, delirium and dyspnoea were still troublesome symptoms in these people in the last few days of life. Control of other symptoms appeared to be similar in sedated and non-sedated people. Only one study measured unintended adverse effects of sedative drugs and found no major events; however, four of 70 participants appeared to have drug-induced delirium. The study noticed no respiratory suppression. Thirteen of the 14 studies measured survival time from admission or referral to death, and all demonstrated no statistically significant difference between sedated and non-sedated groups. There was insufficient evidence about the efficacy of palliative sedation in terms of a person's quality of life or symptom control. There was evidence that palliative sedation did not hasten death, which has been a concern of physicians and families in prescribing this treatment. However, this evidence comes from low quality studies, so should be interpreted with caution. Further studies that specifically measure the efficacy and quality of life in sedated people, compared with non-sedated people, and quantify adverse effects are required.

  12. 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.

  13. 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.

  14. Palliative radiotherapy for multiple myeloma

    International Nuclear Information System (INIS)

    Furusawa, Mitsuhiro; Baba, Yuji; Murakami, Ryuji; Yokoyama, Toshimi; Nishimura, Ryuichi; Uozumi, Hideaki; Takada, Chitose; Takahashi, Mutsumasa

    1995-01-01

    This study reviews the experience of palliative radiotherapy to patients with multiple myeloma to define the optimal dose for pain relief. The records of 31 patients (66 sites) with multiple myeloma irradiated for palliation at Kumamoto University hospital between 1985 and 1994 were reviewed. Total dose ranged from 8 to 50 Gy, with a mean of 32.2 Gy. Symptoms included pain (78.1%), neurological abnormalities (28.1%), and palpable masses (34.3%). Symptomatic remission was obtained in 45 of 46 evaluable sites (97.8%). Complete remission of symptoms were obtained in 28.3%, and partial remission in 69.6%. According to fraction size, there was no significant difference between 3-5 Gy and 1.8-2 Gy. The incidence of complete remission increased when a total dose of more than 20 Gy was given. When the quality of life is considered, hypofractionation was recommended for the palliative radiation therapy of multiple myeloma. (author)

  15. Palliative Care in Heart Failure

    Directory of Open Access Journals (Sweden)

    Hatice Mert

    2012-04-01

    Full Text Available Heart failure is an important health problem since its incidence and prevalence is increasing year by year. Since symptom burden and mortality are high in heart failure, supportive and palliative care should be provided. However, very few patients are referred to palliative care services. In comparison with cancer patients, it is difficult to identify end of life care for patients with heart failure, because these patients are hospitalized when the signs of acute decompensation appear, and their symptoms decrease and functional status improve before they are discharged. Therefore, palliative care, which is a holistic approach aiming to improve patients’ quality of life, to detect and treat the attacks of the disease before they become severe, and to deal with patients’ physical, psychological, social, and mental health altogether during their care, should be integrated into heart failure patients’ care. [TAF Prev Med Bull 2012; 11(2.000: 217-222

  16. Measurement of pulmonary vascular resistance of Fontan candidates with pulmonary arterial distortion by means of pulmonary perfusion imaging

    International Nuclear Information System (INIS)

    Park, In-Sam; Mizukami, Ayumi; Tomimatsu, Hirofumi; Kondou, Chisato; Nakanishi, Toshio; Nakazawa, Makoto; Momma, Kazuo

    1998-01-01

    We measured the distribution of blood flow to the right (R) and left lung (L) by means of pulmonary perfusion imaging and calculated pulmonary vascular resistance (Rp) in 13 patients, whose right and left pulmonary artery pressures were different by 2 to 9 mmHg due to pulmonary arterial distortion (5 interruption, 8 stenosis). The right lung/left lung blood flow ratio was determined and from the ratio and the total pulmonary blood flow, which was determined using the Fick's principle, the absolute values of right and left pulmonary blood flow were calculated. Using the right and left pulmonary blood flow and the right and left pulmonary arterial pressures, right and left pulmonary vascular resistance were calculated, separately. Vascular resistance of the whole lung (Rp) was then calculated using the following equation. 1/(Rp of total lung)=1/(Rp of right lung)+1/(Rp of left lung). Rp calculated from this equation was 1.8+/-0.8 U·m 2 and all values were less than 3 U·m 2 (range 0.3-2.8). Rp estimated from the conventional method using the total pulmonary blood flow and pulmonary arterial pressures, without using the right/left blood flow ratio, ranging from 0.4 to 3.8 U·m 2 and 5 of 13 patients showed Rp>3 U·m 2 . All patients underwent Fontan operation successfully. These data indicated that this method is useful to estimate Rp and to determine the indication of Fontan operation in patients with pulmonary arterial distortions. (author)

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

    Science.gov (United States)

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

    2018-04-01

    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 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.

  18. 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.

  19. '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.

  20. 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, pcommunication 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

  1. Patients who die during palliative radiotherapy. Status survey

    International Nuclear Information System (INIS)

    Berger, B.; Ankele, H.; Bamberg, M.; Zips, D.

    2014-01-01

    Palliative radiotherapy (RT) is routinely used in end of life care of patients with advanced malignancies; however, unnecessarily burdensome treatment shortly before death should be avoided. There is little knowledge on incidence and causes of intercurrent deaths during palliative RT. In this study death events among inpatients receiving palliative RT between January 2009 and December 2011 at this department were retrospectively analyzed. Among epidemiological factors, treatment schedule and chronology, latency and duration of treatment in relation to the actual survival were identified. In this study 52 patients died during or shortly after palliative RT. Symptomatic bone metastases and brain metastases represented the most common RT indications. The general health status was poor with a median Karnofsky performance score of 50 %, RT was realized with a median single dose of 2.5 Gy to a median total dose of 30.5 Gy and was stopped prematurely in 73 % of patients. On average 53 % of the remaining lifetime was occupied by latency to starting RT. Once RT was begun the treatment duration required a median 64 % of the still remaining lifetime. The majority of patients who died had explicitly adverse pre-existing factors and rarely completed RT as scheduled. Latency to RT and RT duration occupied more than half of the remaining lifetime. (orig.) [de

  2. 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.

  3. 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.

  4. Geritalk: communication skills training for geriatric 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

    2012-02-01

    Expert communication is essential to high-quality care for older patients with serious illness. Although the importance of communication skills is widely recognized, formal curricula for teaching communication skills to geriatric and palliative medicine fellows is often inadequate or unavailable. The current study 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 that geriatric and palliative medicine fellows face. 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 before the course. Geriatric 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 a 5-point scale). After the course, fellows reported an increase in self-assessed preparedness for specific communication challenges (mean increase 1.4 on 5-point scale, P communication skills program, customized for the specific needs of geriatric and palliative medicine fellows, improved fellows' self-assessed preparedness for challenging communication tasks and provided a model for ongoing deliberate practice of communication skills. © 2012, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

  5. Treatment of Children with Protein – Losing Enteropathy After Fontan and Other Complex Congenital Heart Disease Procedures in Condition with Limited Human and Technical Resources

    OpenAIRE

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

    2014-01-01

    Background Protein-losing enteropathy (PLE) is a disorder characterized by abnormal and often profound enteric protein loss. It’s relatively uncommon complication of Fontan and other complex congenital heart disease (CCHD) procedures. Because of the complexity and rarity of this disease process, the pathogenesis and pathophysiology of protein-losing enteropathy remain poorly understood, and attempts at treatment seldom yield long-term success. Aim of presentation is to describe single centre ...

  6. 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.

  7. 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.

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

    Science.gov (United States)

    Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith

    2014-01-01

    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 considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.

  9. Palliative management of hilar cholangiocarcinoma

    NARCIS (Netherlands)

    Singhal, D.; van Gulik, T. M.; Gouma, D. J.

    2005-01-01

    Around 80% of the patients with hilar cholangiocarcinoma are candidates for palliative management due to extensive co-morbidity for major surgery, metastases or advanced loco-regional disease. The primary aim of treatment is to provide biliary drainage with long-term relief from pruritis,

  10. Opioid use in palliative care

    African Journals Online (AJOL)

    Repro

    care. The confident and safe use of opioids in palliative care is an essential skill required by all. d o c t o r s . ... patient for ongoing clinical review. Start the elderly and frail .... (24 hour subcutaneous infusion ... (nursing or medical), pain special-.

  11. 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

  12. 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.

  13. [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.

  14. 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...

  15. 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.

  16. Clinical benefit of palliative radiation therapy in advanced gastric cancer

    International Nuclear Information System (INIS)

    Kim, Michelle M.; Rana, Vishal; Janjan, Nora A.

    2008-01-01

    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

  17. Ethical validity of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan.

    Science.gov (United States)

    Morita, Tatsuya; Chinone, Yoshikazu; Ikenaga, Masayuki; Miyoshi, Makoto; Nakaho, Toshimichi; Nishitateno, Kenji; Sakonji, Mitsuaki; Shima, Yasuo; Suenaga, Kazuyuki; Takigawa, Chizuko; Kohara, Hiroyuki; Tani, Kazuhiko; Kawamura, Yasuo; Matsubara, Tatsuhiro; Watanabe, Akihiko; Yagi, Yasuo; Sasaki, Toru; Higuchi, Akiko; Kimura, Hideyuki; Abo, Hirofumi; Ozawa, Taketoshi; Kizawa, Yoshiyuki; Uchitomi, Yosuke

    2005-10-01

    Although palliative sedation therapy is often required in terminally ill cancer patients to achieve acceptable symptom relief, empirical data supporting the ethical validity of this approach are lacking. The primary aim of this study was to systematically investigate whether empirical evidence supports the ethical validity of sedation. This was a multicenter, prospective, observational study, which was conducted by 21 specialized palliative care units in Japan. One-hundred two consecutive adult cancer patients who received continuous deep sedation were enrolled. Continuous deep sedation was defined as the continuous use of sedative medications to relieve intolerable and refractory distress by achieving almost or complete unconsciousness until death. Prior to the study, we conceptualized the ethical validity of sedation from the viewpoints of physicians' intent, proportionality, and autonomy. Sedation was performed mainly with midazolam and phenobarbital. The initial doses of midazolam and phenobarbital were 1.5 mg/hour and 20 mg/hour, respectively. Main administration routes were continuous subcutaneous infusion and continuous intravenous infusion, and no rapid intravenous injection was reported. Of 59 patients who received artificial hydration or could intake adequate fluids/foods orally before sedation, 63% received artificial hydration therapy after sedation, and in the remaining patients, artificial hydration was withheld or withdrawn due to fluid retention symptoms and/or patient wishes. Of 66 patients who were able to verbally express themselves, 95% explicitly stated that symptoms were intolerable. The etiologies of the symptoms requiring sedation were primarily related to the progression of the underlying malignancy, such as cancer cachexia and organ failure, and standard palliative treatments had failed: steroids in 68% of patients with fatigue, opioids in 95% of patients with dyspnea, antisecretion medications in 75% of patients with bronchial secretion

  18. The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation.

    Science.gov (United States)

    Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

    2011-01-01

    We wanted to assess Indian palliative-care nurses and physicians' attitudes toward pain control and palliative sedation. From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.

  19. The African Palliative Care Association (APCA Atlas of Palliative Care Development in Africa: a comparative analysis

    Directory of Open Access Journals (Sweden)

    John Y Rhee

    2018-03-01

    Funding: Arnhold Institute of Global Health at the Icahn School of Medicine at Mount Sinai, the African Palliative Care Association, the International Association for Hospice and Palliative Care, and the Institute for Culture and Society at the University of Navarra.

  20. The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation

    Science.gov (United States)

    Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

    2011-01-01

    Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms. PMID:21633619

  1. 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.

  2. 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.

  3. Palliative care education for medical students: Differences in course evolution, organisation, evaluation and funding: A survey of all UK medical schools.

    Science.gov (United States)

    Walker, Steven; Gibbins, Jane; Paes, Paul; Adams, Astrid; Chandratilake, Madawa; Gishen, Faye; Lodge, Philip; Wee, Bee; Barclay, Stephen

    2017-06-01

    A proportion of newly qualified doctors report feeling unprepared to manage patients with palliative care and end-of-life needs. This may be related to barriers within their institution during undergraduate training. Information is limited regarding the current organisation of palliative care teaching across UK medical schools. To investigate the evolution and structure of palliative care teaching at UK medical schools. Anonymised, web-based questionnaire. Settings/participants: Results were obtained from palliative care course organisers at all 30 UK medical schools. The palliative care course was established through active planning (13/30, 43%), ad hoc development (10, 33%) or combination of approaches (7, 23%). The place of palliative care teaching within the curriculum varied. A student-selected palliative care component was offered by 29/30 (97%). All medical schools sought student feedback. The course was reviewed in 26/30 (87%) but not in 4. Similarly, a course organiser was responsible for the palliative care programme in 26/30 but not in 4. A total of 22 respondents spent a mean of 3.9 h (median 2.5)/week in supporting/delivering palliative care education (organisers received titular recognition in 18/27 (67%; no title 9 (33%); unknown 3 (11%)). An academic department of Palliative Medicine existed in 12/30 (40%) medical schools. Funding was not universally transparent. Palliative care teaching was associated with some form of funding in 20/30 (66%). Development, organisation, course evaluation and funding for palliative care teaching at UK medical schools are variable. This may have implications for delivery of effective palliative care education for medical students.

  4. 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.

  5. 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.

  6. 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.

  7. 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. PMID:25709195

  8. Pain palliation therapy of bone metastases: palliative or curative?

    International Nuclear Information System (INIS)

    Fischer, M.

    2007-01-01

    In Germany the incidence of breast cancer is about 85 and of prostate cancer about 50 new patients per 100.000 inhabitants/year. In about 80% of prostate cancer patients and 75% of breast cancer patients bone metastases are observed in autopsy. Most of these patients develop severe pain syndrome from bone metastases reducing quality of life during life time. Therapy of these patients should aim at adding life to the years not years to their life. The knowledge of metastatic cell biology, of cell-cell interaction and of tumor-cell, tumor cell-skeleton interaction may modify the therapeutic procedure. Already in 1940/41, Pecher treated a patient suffering from painful prostate cancer bone metastases administering 296 MBq 89 Strontium chloride. About 10 years later, Friedell introduced 32 Phosphorus for treatment of bone metastases from breast cancer. Today in Europe 3 radionuclides are approved for pain palliation therapy as shown in Table.1. Indication: - pain palliation therapy of bone metastases from prostate cancer ( 89 Sr and 186 Re); - pain palliation of all osteoblastic metastases independent from primary tumors ( 153 Sm). Contraindications: - pregnant and lactating females - myelosuppression ( 3 granulocytes; 3 platelets); - impaired renal function (urea >12 mmol/l; creatinine > 150 mmol/l) - incontinence; - acute or chronic spinal cord compression and/or brain metastases causing neurological symptoms; - disseminated intravascular coagulopathy. The recommended activities per treatment are: 89 Sr 150 MBq, 186 Re 1.295 MBq, and 153 Sm 37 MBq/kg BW. Shortly (6-8 weeks) prior to radionuclide therapy for pain palliation no high dose chemotherapy or large field radiation therapy should be performed. Stopping unlabelled bisphosphonate therapy prior to pain palliation therapy is not necessary. This radionuclide therapy may be repeated several time, the interval between tracer administration depends on blood cell count rate. The recommended intervals are for 89 Sr

  9. Palliative radiotherapy for lung cancer: two versus five fractions

    Energy Technology Data Exchange (ETDEWEB)

    Rees, G.J.G.; Devrell, C.E.; Barley, V.L.; Newman, H.F.V. [Bristol Oncology Centre (United Kingdom)

    1997-09-01

    The aim of this prospective randomized trial was to compare the symptomatic effects of two different regimens of palliative radiotherapy for lung cancer. Two hundred and sixteen patients needing palliation were randomized to receive either a 17 Gy mid-point dose in two fractions 1 week apart or 22.5 gy in five daily fractions. Both toxicity and efficacy were evaluated by postal questionnaires. This small study was intended to identify any clinically important differences in toxicity of efficacy between the two regimens. We detected no such difference, although there was a tendency for iatrogentic dysphagia and improvement in chest pain and cough to be more common with the two fraction regimen. The only symptom that was improved in over 50% for 8 or more was haemoptysis. Haemoptysis and chest pain appeared to be the best indications for treatment. The relief of other symptoms was disappointing in both degree and duration. (author).

  10. Palliation of Dysphagia in Carcinoma Esophagus

    OpenAIRE

    Ramakrishnaiah, Vishnu Prasad Nelamangala; Malage, Somanath; Sreenath, G.S.; Kotlapati, Sudhakar; Cyriac, Sunu

    2016-01-01

    Esophageal carcinoma has a special place in gastrointestinal carcinomas because it contains two main types, namely, squamous cell carcinoma and adenocarcinoma. Carcinoma esophagus patients require some form of palliation because of locally advanced stage or distant metastasis, where it cannot be subjected to curable treatment with surgery and chemoradiation. Many modalities of palliation of dysphagia are available, but the procedure with least morbidity, mortality, and long-term palliation of...

  11. Palliative sedation and ethical dilemma

    Directory of Open Access Journals (Sweden)

    Juri Salamah

    2018-01-01

    Full Text Available Palliative sedation is a unique concern for the patient as well as the family. It is a difficult serious ethical dilemma for the physicians to handle. The conflicting ethical principles of autonomy, beneficence and nonmaleficence in continuing versus discontinuing all supportive devices raise concerns among health professionals whether this is euthanasia (physician-assisted suicide or is just prolonging the patient's unnecessary suffering.

  12. 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.

  13. 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.

  14. Patient safety in palliative care: A mixed-methods study of reports to a national database of serious incidents.

    Science.gov (United States)

    Yardley, Iain; Yardley, Sarah; Williams, Huw; Carson-Stevens, Andrew; Donaldson, Liam J

    2018-06-01

    Patients receiving palliative care are vulnerable to patient safety incidents but little is known about the extent of harm caused or the origins of unsafe care in this population. To quantify and qualitatively analyse serious incident reports in order to understand the causes and impact of unsafe care in a population receiving palliative care. A mixed-methods approach was used. Following quantification of type of incidents and their location, a qualitative analysis using a modified framework method was used to interpret themes in reports to examine the underlying causes and the nature of resultant harms. Reports to a national database of 'serious incidents requiring investigation' involving patients receiving palliative care in the National Health Service (NHS) in England during the 12-year period, April 2002 to March 2014. A total of 475 reports were identified: 266 related to pressure ulcers, 91 to medication errors, 46 to falls, 21 to healthcare-associated infections (HCAIs), 18 were other instances of disturbed dying, 14 were allegations against health professions, 8 transfer incidents, 6 suicides and 5 other concerns. The frequency of report types differed according to the care setting. Underlying causes included lack of palliative care experience, under-resourcing and poor service coordination. Resultant harms included worsened symptoms, disrupted dying, serious injury and hastened death. Unsafe care presents a risk of significant harm to patients receiving palliative care. Improvements in the coordination of care delivery alongside wider availability of specialist palliative care support may reduce this risk.

  15. Diversity receiver

    NARCIS (Netherlands)

    2005-01-01

    The invention is directed to the reception of high rate radio signals (for example DVB-T signals) while the receiver is moving at a high speed (for example in or with a car). Two or more antennas (12, 16) are closely spaced and arranged behind each other in the direction of motion (v) for receiving

  16. Supportive and palliative care needs of families of children who die from cancer: an Australian study.

    Science.gov (United States)

    Monterosso, Leanne; Kristjanson, Linda J

    2008-01-01

    To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. A qualitative study with semi-structured interviews. 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.

  17. 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

    Background. 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. Methods. 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. Results. 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 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. Implications for Practice: 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 levels of both primary and secondary

  18. Neurodevelopmental Outcome and Health-related Quality of Life in Children With Single-ventricle Heart Disease Before Fontan Procedure.

    Science.gov (United States)

    Reich, Bettina; Heye, Kristina; Tuura, Ruth; Beck, Ingrid; Wetterling, Kristina; Hahn, Andreas; Hofmann, Karoline; Schranz, Dietmar; Akintürk, Hakan; Latal, Beatrice; Knirsch, Walter

    2017-12-05

    Neurodevelopmental impairment and impaired quality of life constitute a major source of morbidity among children with complex congenital heart disease, in particular for single-ventricle (SV) morphologies. Risk factors and quality of life determining clinical and neurodevelopmental outcome at 2 years of age are examined. In a 2-center cohort study, 48 patients with SV morphology (26 hypoplastic left heart syndrome and 22 other types of univentricular heart defect) have been examined before Fontan procedure between 2010 and 2015. Patients were assessed with the Bayley Scales of Infant and Toddler Development, Third Version (Bayley-III), and the Preschool Children Quality of Life (TAPQOL) questionnaire. A total of 44 patients underwent hybrid procedure (n = 25), Norwood procedure (n = 7), or shunt or banding procedure (n = 12) as first surgery before subsequent bidirectional cavopulmonary anastomosis (n = 48). Median cognitive, language, and motor composite scores on the Bayley-III were 100 (range 65-120), 97 (68-124), and 97 (55-124), respectively. The language composite score was significantly below the norm (P = 0.025). Risk factors for poorer neurodevelopmental outcome were prolonged mechanical ventilation, longer days of hospital stay, and more reinterventions (all P neurodevelopmental outcome of this high-risk patient population. Copyright © 2017 Elsevier Inc. All rights reserved.

  19. Usefulness of the Guglielmi detachable coil for embolization of a systemic venous collateral after Fontan operation: A case report.

    Science.gov (United States)

    Sonomura, Tetsuo; Ikoma, Akira; Kawai, Nobuyuki; Suenaga, Tomohiro; Takeuchi, Takashi; Suzuki, Hiroyuki; Uchita, Shunji; Nakai, Motoki; Minamiguchi, Hiroki; Kishi, Kazushi; Sato, Morio

    2012-09-28

    Embolization of collateral veins is often treated with rigid coils (Gianturco and interlocking detachable coils type). However, when dealing with tortuous and dilated collateral veins, there is a high risk for technical failure and coil migration due to inflexibility of the coils. To safely and successfully solve this problem, Guglielmi detachable coils (GDC) can be used for embolization. Their flexibility allows for easy navigation in tortuous veins, low risk of unintended coil release or coil migration, and safe deployment. A 12-year-old girl with a single ventricle had severe cyanosis and a low exercise tolerance 5 years after Fontan procedure. The symptoms were caused by a tortuous and dilated collateral from the left phrenic vein into the left pulmonary vein, forming a right-to-left shunt. The collateral, which had a large diameter and high flow, and therefore a high risk of coil migration, was successfully embolized with 8 GDC. There were no complications such as coil migration or cerebral infarction. Transcatheter embolization increased her systemic oxygen saturation from 81%-84% to 94%-95%, and increased her ability to exercise. The embolization procedure using flexible GDC was low risk compared with other rigid coil embolization techniques when performing embolization of tortuous and dilated collateral veins.

  20. 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.

  1. Using social exchange theory to understand non-terminal palliative care referral practices for Parkinson's disease patients.

    Science.gov (United States)

    Prizer, Lindsay P; Gay, Jennifer L; Perkins, Molly M; Wilson, Mark G; Emerson, Kerstin G; Glass, Anne P; Miyasaki, Janis M

    2017-10-01

    A palliative approach is recommended in the care of Parkinson's disease patients; however, many patients only receive this care in the form of hospice at the end of life. Physician attitudes about palliative care have been shown to influence referrals for patients with chronic disease, and negative physician perceptions may affect early palliative referrals for Parkinson's disease patients. To use Social Exchange Theory to examine the association between neurologist-perceived costs and benefits of palliative care referral for Parkinson's disease patients and their reported referral practices. A cross-sectional survey study of neurologists. A total of 62 neurologists recruited from the National Parkinson Foundation, the Medical Association of Georgia, and the American Academy of Neurology's clinician database. Participants reported significantly stronger endorsement of the rewards ( M = 3.34, SD = 0.37) of palliative care referrals than the costs ( M = 2.13, SD = 0.30; t(61) = -16.10, p < 0.0001). A Poisson regression found that perceived costs, perceived rewards, physician type, and the number of complementary clinicians in practice were significant predictors of palliative care referral. Physicians may be more likely to refer patients to non-terminal palliative care if (1) they work in interdisciplinary settings and/or (2) previous personal or patient experience with palliative care was positive. They may be less likely to refer if (1) they fear a loss of autonomy in patient care, (2) they are unaware of available programs, and/or (3) they believe they address palliative needs. Initiatives to educate neurologists on the benefits and availability of non-terminal palliative services could improve patient access to this care.

  2. Day-to-day care in palliative sedation: survey of nurses' experiences with decision-making and performance.

    Science.gov (United States)

    Arevalo, Jimmy J; Rietjens, Judith A; Swart, Siebe J; Perez, Roberto S G M; van der Heide, Agnes

    2013-05-01

    Continuous palliative sedation has been the focus of extensive international debates in the field of end-of-life decision making. Although nurses may be important participants in the performance of continuous palliative sedation, research has focused primarily on the role and experience of physicians. Nurses' experiences differ from that of physicians; they more often describe that continuous palliative sedation is used with the intention of hastening death and to have experienced serious emotional burden. Therefore, it is important to understand the experience of nurses in continuous palliative sedation. To describe nurses' experiences with the decision-making and performance of continuous palliative sedation in terminally ill patients. Cross-sectional study. In 2008, a structured questionnaire was sent to 576 nurses in six professional home care organizations, ten units for palliative care in nursing homes and in-patient hospices and seven hospitals in the western region of the Netherlands. Respondents provided information about the last patient receiving continuous palliative sedation whom they had cared for. Two-hundred seventy-seven questionnaires were returned and 199 (71.84%) reported a case of continuous palliative sedation. Nurses felt involved in the decision to use sedation in 84% of cases, albeit to a lesser extent in home care (68.75%, p=0.002). They agreed with the performance of continuous palliative sedation in 95.97% of cases and they proposed the use of continuous palliative sedation in 16.16%. Nurses were present at the start of sedation in 81.40% of cases and reported physicians to be present in 45.22%. In 72.77%, arrangements had been made among caregivers about the coordination of health care regarding the sedation. Nurses seem to play an important role in the use of continuous sedation. This role is mainly supportive toward physicians and patients during the decision-making process, but shifts to an active performance of sedation

  3. Flemish palliative-care nurses' attitudes to palliative sedation: a quantitative study.

    Science.gov (United States)

    Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert

    2012-09-01

    Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units.

  4. 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

  5. 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.

  6. Need for palliative care for neurological diseases.

    Science.gov (United States)

    Provinciali, Leandro; Carlini, Giulia; Tarquini, Daniela; Defanti, Carlo Alberto; Veronese, Simone; Pucci, Eugenio

    2016-10-01

    The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients.

  7. 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

  8. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... report inappropriate content. Sign in Transcript Add translations 4,609 views Like this video? Sign in to ... Palliative Care - Duration: 3:29. American Cancer Society 4,363 views 3:29 Pediatric Palliative Care and ...

  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. Is Palliative Care Right for You?

    Science.gov (United States)

    ... to you, need help with: Coping with the stress of a serious illness Emotional support Spiritual or religious support Talking with your family about your illness and what is important to ... What Is Palliative Care Definition Pediatric Palliative Care Disease Types FAQ Handout for ...

  11. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Queue __count__/__total__ It’s YouTube. Uninterrupted. Loading... Want music and videos with zero ads? Get YouTube Red. ... 014 views 6:28 Seasons Hospice & Palliative Care Music Therapy & Alzheimer's - Duration: 6:24. Seasons Hospice & Palliative ...

  12. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Queue __count__/__total__ It’s YouTube. Uninterrupted. Loading... Want music and videos with zero ads? Get YouTube Red. ... 010 views 1:55 Seasons Hospice & Palliative Care Music Therapy & Alzheimer's - Duration: 6:24. Seasons Hospice & Palliative ...

  13. 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.

  14. [Hospice and palliative care in the outpatient department].

    Science.gov (United States)

    Ikenaga, M; Tsuneto, S

    2000-10-01

    In the medical environment, information disclosure to patients and respect of autonomy have spread rapidly. Today, many terminally-ill cancer patients wish to spend as much time at home as possible. In such situations the patient who has been informed that curative treatments are no longer expected to be beneficial can now hope to receive home care and visiting care from hospice/palliative care services. The essential concepts of hospice/palliative care are symptom management, communication, family care and a multidisciplinary approach. These concepts are also important in the outpatient department. In particular, medical staff need to understand and utilize management strategies for common symptoms from which terminally-ill cancer patients suffer (ex. cancer pain, anorexia/fatigue, dyspnea, nausea/vomiting, constipation, hypercalcemia and psychological symptoms). They also need to know how to use continuous subcutaneous infusion for symptom management in the patients last few days. The present paper explains the clinical practices of hospice/palliative care in the outpatient department. Also discussed is support of individual lives so that maximum QOL is provided for patients kept at home.

  15. Quality-of-life assessment during palliative radiotherapy

    International Nuclear Information System (INIS)

    Kearsley, J.H.

    1998-01-01

    A total of 164 consecutive patients with a range of biopsy-proven locally advanced or metastatic cancers were interviewed to assess quality of life using the Rotterdam Symptom Check List (RSCL) at three longitudinal time intervals during a course of palliative radiotherapy. Of the 164 patients, 120 were able to complete all 3 questionnaires. Paired t-tests were used to assess the significance of changes in the patients' mean scores over time. Of the 33 symptoms assessed in the RSCL, changes in the degree of symptomatology were highly consistent with changes expected in clinical practice, as a result of either disease progression or side effects of treatment. It is concluded that the RSCL provides a practical assessment of various symptoms in patients receiving palliative radiotherapy, and that the changes in symptom profile over time are relevant to clinical practice. The RSCL has never been previously used in the assessment of palliative radiotherapy, and the present study validates this instrument. Copyright (1998) Blackwell Science Pty Ltd

  16. 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.

  17. Diagnostic radiology in paediatric palliative care

    International Nuclear Information System (INIS)

    Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran

    2014-01-01

    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.)

  18. 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.)

  19. [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".

  20. Relationships between family physicians’ referral for palliative radiotherapy, knowledge of indications for radiotherapy, and prior training: a survey of rural and urban family physicians

    International Nuclear Information System (INIS)

    Olson, Robert A; Lengoc, Sonca; Tyldesley, Scott; French, John; McGahan, Colleen; Soo, Jenny

    2012-01-01

    The primary objective of this research was to assess the relationship between FPs’ knowledge of palliative radiotherapy (RT) and referral for palliative RT. 1001 surveys were sent to FPs who work in urban, suburban, and rural practices. Respondents were tested on their knowledge of palliative radiotherapy effectiveness and asked to report their self-assessed knowledge. The response rate was 33%. FPs mean score testing their knowledge of palliative radiotherapy effectiveness was 68% (SD = 26%). The majority of FPs correctly identified that painful bone metastases (91%), airway obstruction (77%), painful local disease (85%), brain metastases (76%) and spinal cord compression (79%) can be effectively treated with RT, though few were aware that hemoptysis (42%) and hematuria (31%) can be effectively treated. There was a linear relationship between increasing involvement in palliative care and both self-assessed (p < 0.001) and tested (p = 0.02) knowledge. FPs had higher mean knowledge scores if they received post-MD training in palliative care (12% higher; p < 0.001) or radiotherapy (15% higher; p = 0.002). There was a strong relationship between FPs referral for palliative radiotherapy and both self-assessed knowledge (p < 0.001) and tested knowledge (p = 0.01). Self-assessed and tested knowledge of palliative RT is positively associated with referral for palliative RT. Since palliative RT is underutilized, further research is needed to assess whether family physician educational interventions improve palliative RT referrals. The current study suggests that studies could target family physicians already in practice, with educational interventions focusing on hemostatic and other less commonly known indications for palliative RT

  1. 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

    with and without isomerism. We have now compared these finding with those from patients with primary ciliary dyskinesia, as many patients with isomerism have ciliary dyskinesia. We identified patients having the Fontan circulation with and without isomerism who had undergone cardiopulmonary exercise testing......, comparing the findings from healthy individuals undergoing exercise, and a comparable number of individuals with primary ciliary dyskinesia but no congenital heart disease. We were able to include a total of 68 patients in our study, with 17 in each of the four groups. Cardiopulmonary exercise testing...

  2. Palliative surgery for pancreatic carcinoma

    International Nuclear Information System (INIS)

    Khan, I.M.; Aurangzeb, M.

    2010-01-01

    To evaluate the role of palliative surgical treatment in patients with advanced pancreatic carcinoma. Study Design: Case series. Place and Duration of Study: Surgical Ward of Khyber Teaching Hospital, Peshawar, from January 2005 to January 2009. Methodology: The study included patients with pancreatic carcinoma admitted with advanced, unresectable carcinoma of the pancreas. Patients with resectable tumours and with previous history of gastric or biliary surgery were excluded. Palliative procedures were performed after assessment of the tumour and its confirmation as unresectable on ultrasound and CT scan + ERCP. Postoperatively all patients were referred to oncologist. Complications and mortality were noted. Results: There were 40 patients, including 24 males and 16 females with mean age 58.72 +- 6.42 years. The most common procedure performed was triple bypass in 21 (52.50%) patients followed by choledocho-, cholecysto-, hepaticoand gastro-jejunostomy in various combinations. Wound infection occurred in 7 patients and was more common in patients with co-morbidities. Biliary leakage occurred in 03 patients. Postoperative cholangitis occurred in 3 patients while 7 patients had minor leak from the drain site. Four patients developed UTI, while 5 patients had signs of delayed gastric emptying. Two patients had upper gastrointestinal bleeding. Three patients died due to septicemia and multiple organs failure. Rest of the patients were discharged in stable state. The mean hospital stay was 8.40 +- 3.48 days and median survival was 7.72 +- 2.39 months. Conclusion: Surgical palliation for the advanced carcinoma pancreas can improve the quality of life of patients and is associated with minimum morbidity and mortality. (author)

  3. Palliative radiotherapy of bone metastases

    International Nuclear Information System (INIS)

    Koswig, S.; Buchali, A.; Boehmer, D.; Schlenger, L.; Budach, V.

    1999-01-01

    Background: The effect of the palliative irradiation of bone metastases was explored in this retrospective analysis. The spectrum of primary tumor sites, the localization of the bone metastases and the fractionation schedules were analyzed with regard to palliation discriminating total, partial and complete pain response. Patients and Methods: One hundred seventy-six patients are included in this retrospective quantitative study from April 1992 to November 1993. Two hundred fifty-eight localizations of painful bone metastases were irradiated. The percentage of bone metastases of the total irradiated localizations in our department of radiotherapy in the Carite-Hospital, the primary tumor sites, the localizations and the different fractionation schedules were explored. The total, partial and complete pain response was analyzed in the most often used fractionation schedules and by primary tumor sites. Results: Eight per cent of all irradiated localizations in the observation period were bone metastases. There were irradiated bone metastases of 21 different tumor sites. Most of the primary tumor sites were breast cancer (49%), lung cancer (6%) and kidney cancer (6%). The most frequent site of metastases was the vertebral column (52%). The most often used fractionation schedules were: 4x5 Gy (32%), 10x3 Gy (18%), 6x5 Gy (9%), 7x3 Gy (7%), 10x2 Gy (5%) and 2x8 Gy. The total response rates in this fractionation schedules were 72%, 79%, 74%, 76%, 75% and 72%, the complete response rates were 35%, 32%, 30%, 35%, 33% and 33%. There were no significant differences between the most often irradiated primary tumor sites, the most frequent localizations and the palliation with regard to total, partial and complete pain response. (orig.) [de

  4. Palliative Care: The Oldest Profession?

    Science.gov (United States)

    Duffin, Jacalyn

    2014-01-01

    By the 1960s, the forces that had slowly turned medicine away from comfort toward a greater emphasis on cure had generated a need for better care of the dying and the chronically ill. With reference to the growth of peer-reviewed literature on palliative care, the history of this seemingly new specialty is traced through the hallmarks of professionalization to outline and document the changes in the leaders, the issues, the publications, and the treatment modalities over the last five decades. The focus is on Canada within an international context.

  5. Radiopharmaceuticals for palliative therapy pain

    International Nuclear Information System (INIS)

    Gaudiano, Javier

    1994-01-01

    Dissemination to bone of various neoplasms is cause of pain with poor response by major analgesics.Indications. Radiopharmaceuticals,description of main characteristics of various β emitter radionuclides.Choose of patients for worm indication of pain palliative therapy with β emitter radiopharmaceuticals is adequate must be careful . Contraindications are recognized.Pre and post treatment controls as clinical examination and complete serology are described.It is essential to subscribe protocols,keep patient well informed,included the physician in charge of the patient as part of the team.Bibliography

  6. Value of palliation and improvement in quality of life in oesophageal cancer patients treated with iridium - 192 HDR fractionated brachytherapy

    International Nuclear Information System (INIS)

    Biaias, B.; Kaleta, R.; Fijaikowski, M.

    1996-01-01

    During December 1992 - November 1995 twenty-two patients with oesophageal cancer were treated with palliative HDR brachytherapy. Sixteen patients had local recurrence or progression after external radiotherapy and the remaining six patients were treated with brachytherapy alone. All patients received fractions of 7.5 Gy at the reference point 2 - 4 time weekly. Reference point was calculated at 0.5 cm distance from applicator surface. Microselectron HDR device with Iridium-192 source were used. Criteria for palliative effect were as follow: relive of symptoms time of occurrence and duration of palliative effect. Quality of life during and after treatment were evaluated by patients and staff independently. In majority of patients both palliative effect and significant improvement of quality of life were noted. Detail results include: - improvement in swallowing in 63,6% ((14(22))); - increase in body weight in 45% ((10(22))); - pain relive 70% ((12(17))); - appearance of palliation 1 hour - 8 days; - duration of palliation - 3-12 mo. (median 5 mo.); Quality of live - improvement - 59% ((13(22))); - no improvement - 27.3% ((6(22))); - worsening - 13.7% ((3(22))); No improvement or worsening in quality of life were observed only in patients who obtained radical radiotherapy previously. Brachytherapy is an effective method of palliative treatment for as well primary and recurrent oesophageal cancer

  7. 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.

  8. 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

  9. 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

  10. Symptomatic splenomegaly and palliative radiotherapy

    International Nuclear Information System (INIS)

    Yaneva, M.; Vlaikova, M.

    2005-01-01

    We analysed the effect of irradiation of an enlarged spleen in some hematologic diseases: chronic myelaemia, osteomyelophybrosis and chronic lymphadenosis, where splenectomy had been contraindicated and where pain has been a leading symptom and also the discomfort because of an enlarged spleen. For 20 years in the Clinic of Radiotherapy have been treated 23 patients with the above mentioned diseases. We have irradiated all patients using X-ray and later- Co-60. To reach a palliative effect we have irradiated patients with single doses from 50 cGy to 100 cGy with an interval of 2-3 days between each fraction, but the total doses have been different- from 400 cGy to 1500 cGy. The enlarged spleen has reached the pelvis in 3 cm to 17 cm below the costal margin, and in some patients has crossed the median line of the body going in some centimetres on the other side. The reduction of splenic size and volume is as follows: full reduction in 6 patients (26.1%) and partial in 17 (73.9%). All patients resulted in decreases in pain and tension in abdomen and the total discomfort. No serious side haematologic effects were encountered. Our experience indicates that cautious splenic irradiation can be a safe and useful therapeutic alternative. The symptomatic palliation in patients, where splenectomy is not an option, is effective and is an additional alternative for an improvement of their general condition

  11. Palliative radiotherapy for liver metastases

    International Nuclear Information System (INIS)

    Eble, M.J.; Gademann, G.; Wannenmacher, M.

    1993-01-01

    The role of palliative irradiation was analysed in 55 patients with liver metastases from colorectal, breast and lung cancer, treated with irradiation doses more than 10 Gy. In 47 patients irradiation alone was done. In 29 patients the disease involved not only the liver, but was disseminated. A mean dose of 23.8 Gy was delivered, with daily fractions of 1.5, 1.8 or 2 Gy. Complete and near complete pain relief was obtained in six and nine patients. Normalized and near normalized values of bilirubin serum levels were obtained in five and seven patients. Relief of pain as well as normalisation of cholestasis were significantly correlated with the irradiation doses applied. Median survival was 36.5 days for patients with lung cancer, 70.5 and 73 days for patients with breast and colorectal cancer. Irradiation doses given and the status of disease were significantly correlated to prognosis. In the majority of our patients with clinical symptoms, i.e. pain or cholestase, irradiation alone was sufficient for palliation of these symptoms. Prognosis is limited because of the disseminated state of disease in 62% of the patients. In a group of patients, suffering from colorectal cancer with good prognostic criteria, the simultaneous application of radiotherapy and systemic chemotherapy was able to increase significantly the survival with minor toxicity. The use of a three-dimensional treatment planning could optimize the radiotherapy, due to the dose-volume histogram analysis. (orig./MG) [de

  12. 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.

  13. Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) - work package II: palliative care for pediatric patients.

    Science.gov (United States)

    Ulrich, Lisa-R; Gruber, Dania; Hach, Michaela; Boesner, Stefan; Haasenritter, Joerg; Kuss, Katrin; Seipp, Hannah; Gerlach, Ferdinand M; Erler, Antje

    2018-01-05

    In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). This study will provide important information on what matters

  14. Palliative Sedation in Patients With Cancer.

    Science.gov (United States)

    Maltoni, Marco; Setola, Elisabetta

    2015-10-01

    Palliative sedation involves the use of sedative medication to relieve refractory symptoms in patients by reducing their level of consciousness. Although it is considered an acceptable clinical practice from most ethical points of view, palliative sedation is still a widely debated procedure and merits better understanding. The relevant medical literature pertaining to palliative sedation was analyzed and reviewed from various technical, relational, and bioethical perspectives. Proportionate palliative sedation is considered to be the most clinically appropriate modality for performing palliative sedation. However, guidelines must be followed to ensure that it is performed correctly. Benzodiazepines represent the first therapeutic option and careful monitoring of dosages is essential to avoid oversedation or undersedation. Proportionate palliative sedation is used to manage and relieve refractory symptoms in patients with cancer during their last days or hours of life. Evidence suggests that its use has no detrimental effect on survival. A different decision-making process is used to manage the withdrawal of hydration than the process used to determine whether proportionate palliative sedation is appropriate. Communication between patients, their relatives, and the health care staff is important during this medical intervention.

  15. Palliative reirradiation of recurrent rectal carcinoma

    International Nuclear Information System (INIS)

    Lingareddy, Vasudha; Ahmad, Neelofur; Mohiuddin, Mohammed

    1995-01-01

    PURPOSE: This report will summarize symptom palliation, complication rate, and survival outcome of an aggressive reirradiation policy for patients with recurrent rectal cancer. MATERIALS and METHODS: From 1987 - 1993, 83 patients with recurrent rectal adenocarcinoma following previous pelvic irradiation (RT) underwent reirradiation. Thirty-one patients were treated with radical intent, and underwent reirradiation followed by planned surgical resection. The remaining fifty-two patients underwent reirradiation alone and are the basis of this study. Median initial RT dose was 50.4 Gy (range 40.0 - 70.2 Gy), and median time to recurrence was 24 months. Reirradiation was delivered with two lateral fields (7x7 - 12x10 cm) encompassing recurrent tumor with a minimum of 2 cm margin and excluding all small bowel. Thirty patients received 1.8 - 2.0 Gy daily fractions, and 22 patients received 1.2 Gy BID fractions. Median reirradiation dose was 30.6 Gy (range 19.8 - 40.8 Gy). Median total cumulative dose was 84.6 Gy (range 66.6 - 104.9 Gy). Forty-seven of the 52 patients received concurrent 5-FU based chemotherapy. Median follow up for the entire group was 16 months (range 2 - 53 months). Eight patients who remain alive at the time of this study had a median follow up of 22 months (range 13 - 48 months). RESULTS: Patients' presenting symptoms included bleeding, pain and mass effect. Results of treatment are shown in Table 1. Treatment was well tolerated. Using the RTOG toxicity scale, 16 patients required a treatment break for grade 3 toxicity including severe diarrhea, moist desquamation, and mucositis. No patient developed grade 4 acute toxicity. Eighteen patients (35%) developed late grade 3 or 4 morbidity, including bowel obstruction in 9 patients, cystitis in 3 patients, fistula in 4 patients and skin ulceration in 1 patient. There was no difference in incidence of late complications by time to recurrence, reirradiation dose, or total cumulative dose. However, there was

  16. Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents.

    OpenAIRE

    Neilson, SJ; Gibson, F; Greenfield, SM

    2015-01-01

    Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the\\ud role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents.\\ud Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents\\ud following the death. A grounded theory data analysis was undertaken; identifying...

  17. Plasma concentrations of fentanyl with subcutaneous infusion in palliative care patients.

    Science.gov (United States)

    Miller, R S; Peterson, G M; Abbott, F; Maddocks, I; Parker, D; McLean, S

    1995-12-01

    1. Plasma concentrations of fentanyl were measured by g.c. in 20 patients (median age: 75 years and range: 54-86 years; eight females) in palliative care receiving the drug by continuous s.c. infusion (median rate: 1200 micrograms day-1 and range: 100-5000 micrograms day-1). 2. The infusion rate was significantly related to the duration of therapy (Spearman rho = 0.56, P Infusion rates and both total and unbound plasma concentrations of fentanyl were correlated (Spearman rho = 0.92, P infusion in the palliative care setting, which necessitates careful titration of dosage according to individual clinical response.

  18. Aggressive palliative surgery in metastatic phyllodes tumor: Impact on quality of life

    Directory of Open Access Journals (Sweden)

    A S Kapali

    2010-01-01

    Full Text Available Metastatic phyllodes tumor has very few treatment options. Phyllodes tumor in metastatic setting has limited role of surgery, radiotherapy and chemotherapy or combined treatment. Most of the patients receive symptomatic management only. We present a case of metastatic phyllodes tumor managed with aggressive margin negative resection of primary tumor leading to palliation of almost all the symptoms, which eventually led to improved quality of life and probably to improved survival. The improved quality of life was objectively assessed with Hamilton depression rating scale. Surgery may be the only mode of palliation in selected patients that provides a better quality of life and directly or indirectly may lead to improved survival.

  19. Moving toward quality palliative cancer care: parent and clinician perspectives on gaps between what matters and what is accessible.

    Science.gov (United States)

    Kassam, Alisha; Skiadaresis, Julia; Habib, Sharifa; Alexander, Sarah; Wolfe, Joanne

    2013-03-01

    The National Consensus Project (NCP) published a set of standards for quality palliative care delivery. A key step before applying these guidelines to pediatric oncology is to evaluate how much families and clinicians value these standards. We aimed to determine which elements of palliative care are considered important according to bereaved parents and pediatric oncology clinicians and to determine accessibility of these elements. We administered questionnaires to 75 bereaved parents (response rate, 54%) and 48 pediatric oncology clinicians (response rate, 91%) at a large teaching hospital. Outcome measures included importance ratings and accessibility of core elements of palliative care delivery. Fifteen of 20 core elements were highly valued by both parents and clinicians (defined as > 60% of parents and clinicians reporting the item as important). Compared with clinicians, parents gave higher ratings to receiving cancer-directed therapy during the last month of life (P involvement of a spiritual mentor (P = .03). Of the valued elements, only three were accessible more than 60% of the time according to clinicians and parents. Valued elements least likely to be accessible included a direct admission policy to hospital, sibling support, and parent preparation for medical aspects surrounding death. Parents and clinicians highly value a majority of palliative care elements described in the NCP framework. Children with advanced cancer may not be receiving key elements of palliative care despite parents and clinicians recognizing them as important. Evaluation of barriers to provision of quality palliative care and strategies for overcoming them are critical.

  20. Information needs about palliative care and euthanasia: A survey of patients in different phases of their cancer trajectory.

    Science.gov (United States)

    Beernaert, Kim; Haverbeke, Chloë; Van Belle, Simon; Deliens, Luc; Cohen, Joachim

    2018-01-01

    We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients. Cancer patients consulting a university hospital (N=620) filled out a questionnaire. Their cancer related data were collected through the treating oncologist. This study is performed in Belgium, where "palliative care for all" is a patient's right embedded in the law and euthanasia is possible under certain conditions. Around 80% received information about their illness course and treatments. Ten percent received information about palliative care and euthanasia. Most information about palliative care and euthanasia was given when the patient had a life expectancy of less than six months. However, a quarter of those in earlier phases in their illness trajectory, particularly those who experienced high pain, fatigue or nausea requested more information on these topics. Many patients want more information about palliative care and euthanasia than what is currently provided, also those in an earlier than terminal phase of their disease. Healthcare professionals should be more responsive, already from diagnosis, to the information needs about palliative care and possible end-of-life decisions. This should be patient-tailored, as some patients want more and some patients want less information. Copyright © 2017 Elsevier B.V. All rights reserved.

  1. The Attitudes of Indian Palliative-Care Nurses and Physicians toward Pain Control and Palliative Sedation

    OpenAIRE

    Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K.; Van den Branden, Stef; Broeckaert, Bert

    2011-01-01

    Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, ...

  2. The attitudes of Indian palliative-care nurses and physicians to pain control and palliative sedation

    OpenAIRE

    Joris Gielen; Harmala Gupta; Ambika Rajvanshi; Sushma Bhatnagar; Seema Mishra; Arvind K Chaturvedi; Stef Van den Branden; Bert Broeckaert

    2011-01-01

    Aim: We wanted to assess Indian palliative-care nurses and physicians′ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem...

  3. Muslim physicians and palliative care: attitudes towards the use of palliative sedation.

    Science.gov (United States)

    Muishout, George; van Laarhoven, Hanneke W M; Wiegers, Gerard; Popp-Baier, Ulrike

    2018-05-08

    Muslim norms concerning palliative sedation can differ from secular and non-Muslim perceptions. Muslim physicians working in a Western environment are expected to administer palliative sedation when medically indicated. Therefore, they can experience tension between religious and medical norms. To gain insight into the professional experiences of Muslim physicians with palliative sedation in terms of religious and professional norms. Interpretative phenomenological study using semi-structured interviews to take a closer look at the experiences of Muslim physicians with palliative sedation. Data were recorded, transcribed and analysed by means of interpretative phenomenological analysis (IPA). Ten Muslim physicians, working in the Netherlands, with professional experience of palliative sedation. Two main themes were identified: professional self-concept and attitudes towards death and dying. Participants emphasized their professional responsibility when making treatment decisions, even when these contravened the prevalent views of Islamic scholars. Almost all of them expressed the moral obligation to fight their patients' pain in the final stage of life. Absence of acceleration of death was considered a prerequisite for using palliative sedation by most participants. Although the application of palliative sedation caused friction with their personal religious conceptions on a good death, participants followed a comfort-oriented care approach corresponding to professional medical standards. All of them adopted efficient strategies for handling of palliative sedation morally and professionally. The results of this research can contribute to and provide a basis for the emergence of new, applied Islamic ethics regarding palliative sedation.

  4. [Palliative care practices at home: instead of social exclusion of older people in later life?].

    Science.gov (United States)

    Hébert, Marijo; Nour, Kareen; Durivage, Patrick; Wallach, Isabelle; Billette, Véronique; Freitas, Zelda

    2011-06-01

    The understanding of palliative care practices at home (PCH) is limited by the lack of available scientific knowledge. This is explained by the fact that its practices are relatively recent and they question our relationship with death and dying individuals. This study aims to contribute to the advancement of knowledge about PCH with the elderly. More specifically, with a perspective of social exclusion, it aims to understand how practices either do or do not produce social exclusion with seniors receiving palliative care. Nineteen participants from two local community services centers were interviewed and six multidisciplinary meetings were attended for observation. This study suggests that positive representations concerning the elderly in palliative care and recognition of their autonomy can avoid social exclusion, including its symbolic and identificatory dimensions. However, standardization of practices seems to contribute to institutional exclusion and foster nonrecognition.

  5. A case of advanced gastric cancer resected for rebleeding after palliative radiotherapy for hemostasis

    International Nuclear Information System (INIS)

    Muneoka, Yusuke; Ichikawa, Hiroshi; Ishikawa, Takashi

    2016-01-01

    We report a case of advanced gastric cancer (AGC) that was resected for rebleeding after palliative radiotherapy for hemostasis. A 74-year-old man with Stage IV gastric cancer received chemotherapy and achieved stable disease. After 23 months, he experienced continuous bleeding from the tumor due to regrowth. Palliative radiotherapy was conducted to control the bleeding, and the tumor successfully achieved hemostasis. However, 6 weeks later, the patient experienced rebleeding and developed hemostatic shock. We then performed a successful emergency gastrectomy. Bleeding negatively affects quality of life in patients with AGC and is potentially lethal. Although palliative radiotherapy for bleeding of gastric cancer is a safe and useful treatment within a short time frame in cases of rebleeding, emergency gastrectomy may be necessary. Therefore, when we select this treatment, the possibility of subsequent surgical treatment must be considered. (author)

  6. Pain and symptom management in palliative care and at end of life.

    Science.gov (United States)

    Wilkie, Diana J; Ezenwa, Miriam O

    2012-01-01

    The purpose of this review is to provide a literature update of the research published since 2004 on pain and symptom management in palliative care and at end of life. Findings suggest that pain and symptoms are inadequately assessed and managed, even at the end of life. Although not pervasive, there is evidence of racial/ethnic disparities in symptom management in palliative care and at end of life. There is a need for a broader conceptualization and measurement of pain and symptom management as multidimensional experiences. There is insufficient evidence about mechanisms underlying pain at end of life. Although there are advances in the knowledge of pain as a multidimensional experience and the many symptoms that occur sometimes with pain, gaps remain. One approach to addressing the gaps will involve assessment and management of pain and symptoms as multidimensional experiences in people receiving palliative care and at end of life. Copyright © 2012 Elsevier Inc. All rights reserved.

  7. The "Palliative Care Quality of Life Instrument (PQLI" in terminal cancer patients

    Directory of Open Access Journals (Sweden)

    Kouvaris John

    2004-02-01

    Full Text Available Abstract Background This paper describes the development of a new quality of life instrument in advanced cancer patients receiving palliative care. Methods The Palliative Care Quality of Life Instrument incorporates six multi-item and one single-item scale. The questionnaire was completed at baseline and one-week after. The final sample consisted of 120 patients. Results The average time required to complete the questionnaire, in both time points, was approximately 8 minutes. All multi-item scales met the minimal standards for reliability (Cronbach's alpha coefficient ≥.70 either before or during palliative treatment. Test-retest reliability in terms of Spearman-rho coefficient was also satisfactory (p Conclusion The PQLI is a reliable and valid measure for the assessment of quality of life in patients with advanced stage cancer.

  8. Classification of a palliative care population in a comprehensive cancer centre

    DEFF Research Database (Denmark)

    Benthien, K.S; Nordly, M.; Videbæk, K.

    2016-01-01

    PURPOSE: The purposes of the present study were to classify the palliative care population (PCP) in a comprehensive cancer centre by using information on antineoplastic treatment options and to analyse associations between socio-demographic factors, cancer diagnoses, treatment characteristics...... and receiving specialist palliative care (SPC). METHODS: This is a cross-sectional screening study of patients with cancer in the Department of Oncology, Rigshospitalet, Copenhagen University Hospital for 6 months. Patients were assessed to be included in the DOMUS study: a randomised controlled trial...... of accelerated transition to SPC at home (NCT01885637). The PCP was classified as patients with incurable cancer and limited or no antineoplastic treatment options. Patients with performance status 2-4 were further classified as the essential palliative care population (EPCP). RESULTS: During the study period...

  9. A palliative care resource for professional carers of people with learning disabilities.

    Science.gov (United States)

    Reddall, C

    2010-07-01

    People with learning disabilities who have a life-threatening illness, are as entitled as other members of the population to receive good palliative care in their home of choice. However, professional carers of people with learning disability are generally unaware of the meaning of palliative care, and how they can access palliative care support. More importantly, they may feel they are not capable of caring for a resident with a life-threatening illness in the home environment. This article uses a case study to help illustrate the value of compiling a resource booklet for professional carers of people with learning disabilities. By providing information on palliative care, that is easy to understand and easily accessible, professional carers of these people can have a valuable resource which will enable them to provide general palliative care when needed. (I use the term professional carers to refer to carers who are paid to look after people with learning disabilities either in care homes, or in supported living homes in the general community).

  10. Palliative Sedation in Advanced Cancer Patients: Does it Shorten Survival Time? - A Systematic Review.

    Science.gov (United States)

    Barathi, B; Chandra, Prabha S

    2013-01-01

    Patients with advanced cancer often suffer from multiple refractory symptoms in the terminal phase of their life. Palliative sedation is one of the few ways to relieve this refractory suffering. This systematic review investigated the effect of palliative sedation on survival time in terminally ill cancer patients. Six electronic databases were searched for both prospective and retrospective studies which evaluated the effect of palliative sedation on survival time. Only those studies which had a comparison group that did not receive palliative sedation were selected for the review. Abstracts of all retrieved studies were screened to include the most relevant studies and only studies which met inclusion criteria were selected. References of all retrieved studies were also screened for relevant studies. Selected studies were assessed for quality and data extraction was done using the structured data extraction form. Eleven studies including four prospective and seven retrospective studies were identified. Mean survival time (MST) was measured as the time from last admission until death. A careful analysis of the results of all the 11 studies indicated that MST of sedated and non-sedated group was not statistically different in any of the studies. This systematic review supports the fact that palliative sedation does not shorten survival in terminally ill cancer patients. However, this conclusion needs to be taken with consideration of the methodology, study design, and the population studied of the included studies in this review.

  11. From cure to palliation: staff communication, documentation, and transfer of patient.

    Science.gov (United States)

    Löfmark, Rurik; Nilstun, Tore; Bolmsjö, Ingrid Agren

    2005-12-01

    In the transition from curative treatment to palliative care of a general end-of-life patient population, the internal communication of the acute care staff seems to be less than optimal. The communication had reference to the dialogue within the staff both before and after the decision to concentrate on palliative care, and possible transfer of the patient. This survey of Swedish nurses and physicians showed that most of 780 respondents wanted more internal communication, and a more individualized procedure of decision-making. All staff should be informed about the decision made but full agreement was not seen as realistic. The largest difference of opinion between nurses and physicians concerned the involvement of nurses in the decision-making about the transition. A uniform documentation of the decision to transfer care focus was the ideal. Approximately every fourth patient in acute care is transferred to receive palliative care. Only approximately half of the respondents had any training in palliative care and the majority wanted more training. There seems to be a need for more palliative care training, perhaps somewhat different for each specialty. Furthermore, a common language to enable nurses and physicians to communicate more easily may improve the transition process.

  12. Palliative sedation in advanced cancer patients: Does it shorten survival time? - A systematic review

    Directory of Open Access Journals (Sweden)

    B Barathi

    2013-01-01

    Full Text Available Background: Patients with advanced cancer often suffer from multiple refractory symptoms in the terminal phase of their life. Palliative sedation is one of the few ways to relieve this refractory suffering. Objectives: This systematic review investigated the effect of palliative sedation on survival time in terminally ill cancer patients. Materials and Methods: Six electronic databases were searched for both prospective and retrospective studies which evaluated the effect of palliative sedation on survival time. Only those studies which had a comparison group that did not receive palliative sedation were selected for the review. Abstracts of all retrieved studies were screened to include the most relevant studies and only studies which met inclusion criteria were selected. References of all retrieved studies were also screened for relevant studies. Selected studies were assessed for quality and data extraction was done using the structured data extraction form. Results: Eleven studies including four prospective and seven retrospective studies were identified. Mean survival time (MST was measured as the time from last admission until death. A careful analysis of the results of all the 11 studies indicated that MST of sedated and non-sedated group was not statistically different in any of the studies. Conclusion: This systematic review supports the fact that palliative sedation does not shorten survival in terminally ill cancer patients. However, this conclusion needs to be taken with consideration of the methodology, study design, and the population studied of the included studies in this review.

  13. Singing and Vocal Interventions in Palliative and Cancer Care: Music Therapists' Perceptions of Usage.

    Science.gov (United States)

    Clements-Cortés, Amy

    2017-11-01

    Music therapists in palliative and cancer care settings often use singing and vocal interventions. Although benefits for these interventions are emerging, more information is needed on what type of singing interventions are being used by credentialed music therapists, and what goal areas are being addressed. To assess music therapists' perceptions on how they use singing and vocal interventions in palliative and cancer care environments. Eighty credentialed music therapists from Canada and the United States participated in this two-part convergent mixed-methods study that began with an online survey, followed by individual interviews with 50% (n = 40) of the survey participants. In both palliative and cancer care, singing client-preferred music and singing for relaxation were the most frequently used interventions. In palliative care, the most commonly addressed goals were to increase self-expression, improve mood, and create a feeling of togetherness between individuals receiving palliative care and their family. In cancer care, the most commonly addressed goals were to support breathing, improve mood, and support reminiscence. Seven themes emerged from therapist interviews: containing the space, connection, soothing, identity, freeing the voice within, letting go, and honoring. Music therapists use singing to address the physical, emotional, social, and spiritual goals of patients, and described singing interventions as accessible and effective. Further research is recommended to examine intervention efficacy and identify factors responsible that contribute to clinical benefit. © the American Music Therapy Association 2017. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  14. Patients who die during palliative radiotherapy. Status survey

    Energy Technology Data Exchange (ETDEWEB)

    Berger, B.; Ankele, H.; Bamberg, M.; Zips, D. [University of Tuebingen, Department of Radiation Oncology, Tuebingen (Germany)

    2014-02-15

    Palliative radiotherapy (RT) is routinely used in end of life care of patients with advanced malignancies; however, unnecessarily burdensome treatment shortly before death should be avoided. There is little knowledge on incidence and causes of intercurrent deaths during palliative RT. In this study death events among inpatients receiving palliative RT between January 2009 and December 2011 at this department were retrospectively analyzed. Among epidemiological factors, treatment schedule and chronology, latency and duration of treatment in relation to the actual survival were identified. In this study 52 patients died during or shortly after palliative RT. Symptomatic bone metastases and brain metastases represented the most common RT indications. The general health status was poor with a median Karnofsky performance score of 50 %, RT was realized with a median single dose of 2.5 Gy to a median total dose of 30.5 Gy and was stopped prematurely in 73 % of patients. On average 53 % of the remaining lifetime was occupied by latency to starting RT. Once RT was begun the treatment duration required a median 64 % of the still remaining lifetime. The majority of patients who died had explicitly adverse pre-existing factors and rarely completed RT as scheduled. Latency to RT and RT duration occupied more than half of the remaining lifetime. (orig.) [German] Die palliative Radiotherapie (RT) hat einen hohen Stellenwert in der Symptomenkontrolle terminal erkrankter Tumorpatienten. Unnoetig belastende Therapien kurz vor Lebensende sollten jedoch vermieden werden. Bislang gibt es kaum strukturierte Daten ueber Sterbefaelle unter palliativer RT. Im Rahmen der vorgestellten Studie wurden die Sterbefaelle unter stationaer palliativ bestrahlten Patienten der eigenen Abteilung zwischen Januar 2009 und Dezember 2011 analysiert. Ausgewertet wurden epidemiologische Faktoren, Behandlungskonzept und -verlauf. Zeit bis zum RT-Beginn und RT-Dauer wurden ins Verhaeltnis zur tatsaechlichen

  15. Involvement of palliative care in euthanasia practice in a context of legalized euthanasia: A population-based mortality follow-back study.

    Science.gov (United States)

    Dierickx, Sigrid; Deliens, Luc; Cohen, Joachim; Chambaere, Kenneth

    2018-01-01

    In the international debate about assisted dying, it is commonly stated that euthanasia is incompatible with palliative care. In Belgium, where euthanasia was legalized in 2002, the Federation for Palliative Care Flanders has endorsed the viewpoint that euthanasia can be embedded in palliative care. To examine the involvement of palliative care services in euthanasia practice in a context of legalized euthanasia. Population-based mortality follow-back survey. Physicians attending a random sample of 6871 deaths in Flanders, Belgium, in 2013. People requesting euthanasia were more likely to have received palliative care (70.9%) than other people dying non-suddenly (45.2%) (odds ratio = 2.1 (95% confidence interval, 1.5-2.9)). The most frequently indicated reasons for non-referral to a palliative care service in those requesting euthanasia were that existing care already sufficiently addressed the patient's palliative and supportive care needs (56.5%) and that the patient did not want to be referred (26.1%). The likelihood of a request being granted did not differ between cases with or without palliative care involvement. Palliative care professionals were involved in the decision-making process and/or performance of euthanasia in 59.8% of all euthanasia deaths; this involvement was higher in hospitals (76.0%) than at home (47.0%) or in nursing homes (49.5%). In Flanders, in a context of legalized euthanasia, euthanasia and palliative care do not seem to be contradictory practices. A substantial proportion of people who make a euthanasia request are seen by palliative care services, and for a majority of these, the request is granted.

  16. Involvement of palliative care in euthanasia practice in a context of legalized euthanasia: A population-based mortality follow-back study

    Science.gov (United States)

    Dierickx, Sigrid; Deliens, Luc; Cohen, Joachim; Chambaere, Kenneth

    2017-01-01

    Background: In the international debate about assisted dying, it is commonly stated that euthanasia is incompatible with palliative care. In Belgium, where euthanasia was legalized in 2002, the Federation for Palliative Care Flanders has endorsed the viewpoint that euthanasia can be embedded in palliative care. Aim: To examine the involvement of palliative care services in euthanasia practice in a context of legalized euthanasia. Design: Population-based mortality follow-back survey. Setting/participants: Physicians attending a random sample of 6871 deaths in Flanders, Belgium, in 2013. Results: People requesting euthanasia were more likely to have received palliative care (70.9%) than other people dying non-suddenly (45.2%) (odds ratio = 2.1 (95% confidence interval, 1.5–2.9)). The most frequently indicated reasons for non-referral to a palliative care service in those requesting euthanasia were that existing care already sufficiently addressed the patient’s palliative and supportive care needs (56.5%) and that the patient did not want to be referred (26.1%). The likelihood of a request being granted did not differ between cases with or without palliative care involvement. Palliative care professionals were involved in the decision-making process and/or performance of euthanasia in 59.8% of all euthanasia deaths; this involvement was higher in hospitals (76.0%) than at home (47.0%) or in nursing homes (49.5%). Conclusion: In Flanders, in a context of legalized euthanasia, euthanasia and palliative care do not seem to be contradictory practices. A substantial proportion of people who make a euthanasia request are seen by palliative care services, and for a majority of these, the request is granted. PMID:28849727

  17. Radiation therapy for the palliation of multiple myeloma

    International Nuclear Information System (INIS)

    Leigh, B.R.; Kurtts, T.A.; Mack, C.F.; Matzner, M.B.; Shimm, D.S.

    1993-01-01

    This study reviews the experience at the University of Arizona in an effort to define the minimum effective radiation dose for durable pain relief in the majority of patients with symptomatic multiple myeloma. The records of 101 patients with multiple myeloma irradiated for palliation at the University of Arizona between 1975 and 1990 were reviewed. Three hundred sixteen sites were treated. Ten sites were asymptomatic, including six hemibody fields with advanced disease unresponsive to chemotherapy and four local fields with impending pathological fractures. Three hundred six evaluable symptomatic sites remained. The most common symptom was bone pain. Other symptoms included neurological impairment with a palpable mass. Total tumor dose ranged from 3.0 to 60 Gy, with a mean of 25 Gy. Symptom relief was obtained in 297 of 306 evaluable symptomatic sites (97%). Complete relief of symptoms was obtained in 26% and partial relief in 71%. Symptom relief was obtained in 92% of sites receiving a total dose less than 10 Gy (n = 13) and 98% of sites receiving 10 Gy or more (n = 293). No dose-response could be demonstrated. The likelihood of symptom relief was not influenced by the location of the lesion or the use of concurrent chemotherapy. Of the 297 responding sites, 6% (n = 19) relapsed after a median symptom-free interval of 16 months. Neither the probability of relapse nor the time to relapse was related to the radiation dose. Retreatment of relapsing sites provided effective palliation in all cases. Radiation therapy is effective in palliating local symptoms in multiple myeloma. A total dose of 10 Gy should provide durable symptom relief in the majority of patients. 16 refs., 3 figs., 4 tabs

  18. The experiences of relatives with the practice of palliative sedation: a systematic review.

    Science.gov (United States)

    Bruinsma, Sophie M; Rietjens, Judith A C; Seymour, Jane E; Anquinet, Livia; van der Heide, Agnes

    2012-09-01

    Guidelines about palliative sedation typically include recommendations to protect the well-being of relatives. The aim of this study was to systematically review evidence on the experiences of relatives with the practice of palliative sedation. PubMed, Embase, Web of Science, PsycINFO, and CINAHL were searched for empirical studies on relatives' experiences with palliative sedation. We investigated relatives' involvement in the decision-making and sedation processes, whether they received adequate information and support, and relatives' emotions. Of the 564 studies identified, 39 were included. The studies (30 quantitative, six qualitative, and three mixed methods) were conducted in 16 countries; three studies were based on relatives' reports, 26 on physicians' and nurses' proxy reports, seven on medical records, and three combined different sources. The 39 studies yielded a combined total of 8791 respondents or studied cases. Caregivers involved relatives in the decision making in 69%-100% of all cases (19 quantitative studies), and in 60%-100% of all cases, relatives were reported to have received adequate information (five quantitative studies). Only two quantitative studies reported on relatives' involvement in the provision of sedation. Despite the fact that the majority of relatives were reported to be comfortable with the use of palliative sedation (seven quantitative studies, four qualitative studies), several studies found that relatives were distressed by the use of sedation (five quantitative studies, five qualitative studies). No studies reported specifically about the support provided to the relatives. Relatives' experiences with palliative sedation are mainly studied from the perspective of proxies, mostly professional caregivers. The majority of relatives seems to be comfortable with the use of palliative sedation; however, they may experience substantial distress by the use of sedation. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published

  19. Pediatric Palliative Care: A Personal Story

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  1. Pediatric Palliative Care: A Personal Story

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  7. Frequently Asked Questions (Palliative Care: Conversations Matter)

    Science.gov (United States)

    ... Medicine at NINR Research Highlights Data Science and Nursing Research Spotlight on End-of-Life and Palliative Care Research Spotlight on Symptom Management Research Spotlight on Pain Research The Science of Compassion: Future Directions in ...

  8. Pediatric Palliative Care: A Personal Story

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  20. Advancing palliative care as a human right.

    Science.gov (United States)

    Gwyther, Liz; Brennan, Frank; Harding, Richard

    2009-11-01

    The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as

  1. Patterns of Practice in Palliative Radiotherapy for Painful Bone Metastases: Impact of a Regional Rapid Access Clinic on Access to Care

    International Nuclear Information System (INIS)

    Wu, Jackson S.Y.; Kerba, Marc; Wong, Rebecca K.S.; Mckimmon, Erin; Eigl, Bernhard; Hagen, Neil A.

    2010-01-01

    Purpose: External beam radiotherapy (RT) is commonly indicated for the palliation of symptomatic bone metastases, but there is evidence of underutilization of this treatment modality in palliative care for cancer populations. This study was conducted to investigate factors that influenced the use of palliative RT services at a regional comprehensive cancer center. Methods and Materials: A cohort of patients with radiographically confirmed bone metastases and first-time users of palliative RT between 2003 and 2005 was retrospectively reviewed from the time of initial diagnosis of bone metastases to death or last follow-up. Type of radiation treatment service provider used (rapid access or routine access) and patient-, tumor-, and treatment-related factors were analyzed for their influences on the number of treatment courses given over the duration of disease. Results: A total of 887 patients received 1,354 courses of palliative RT for bone metastases at a median interval of 4.0 months between courses. Thirty-three percent of patients required more than one RT course. Increased age and travel distance reduced the likelihood and number of treatment courses, while service through a rapid access clinic was independently associated with an increase in subsequent use of palliative RT. Conclusions: A rapid access service model for palliative RT facilitated access to RT. Travel distance and other factors remained substantial barriers to use of palliative RT services. The pattern of practice suggests an unmet need for symptom control in patients with bone metastases.

  2. Dental expression and role in palliative treatment

    Directory of Open Access Journals (Sweden)

    Rajiv Saini

    2009-01-01

    Full Text Available World Health Organization defines palliative care as the active total care of patients whose disease is not responding to curative treatment. Palliative care for the terminally ill is based on a multidimensional approach to provide whole-person comfort care while maintaining optimal function; dental care plays an important role in this multidisciplinary approach. The aim of the present study is to review significance of dentist′s role to determine whether mouth care was effectively assessed and implemented in the palliative care setting. The oral problems experienced by the hospice head and neck patient clearly affect the quality of his or her remaining life. Dentist plays an essential role in palliative care by the maintenance of oral hygiene; dental examination may identify and cure opportunistic infections and dental disease like caries, periodontal disease, oral mucosal problems or prosthetic requirement. Oral care may reduce not only the microbial load of the mouth but the risk for pain and oral infection as well. This multidisciplinary approach to palliative care, including a dentist, may reduce the oral debilities that influence the patient′s ability to speak, eat or swallow. This review highlighted that without effective assessment of the mouth, the appropriate implementation of care will not be delivered. Palliative dental care has been fundamental in management of patients with active, progressive, far-advanced disease in which the oral cavity has been compromised either by the disease directly or by its treatment; the focus of care is quality of life.

  3. Palliative care in Africa: a global challenge.

    Science.gov (United States)

    Ntizimira, Christian R; Nkurikiyimfura, Jean Luc; Mukeshimana, Olive; Ngizwenayo, Scholastique; Mukasahaha, Diane; Clancy, Clare

    2014-01-01

    We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said 'in the middle of difficulty lies opportunity' and this sentiment could not be more relevant to the development of palliative care programmes. Through advocacy, policy, and staunch commitment to compassion, Rwandan healthcare workers are proving how palliative care can be successfully integrated into a healthcare system. As a global healthcare community, we should be asking what opportunities exist to do this across the African continent. Champions of palliative care have a chance to forge lasting collaborations between international experts and African healthcare workers. This global network could not only advocate for palliative care programmes but it would also help to create a culture where palliative care is viewed as a necessary part of all healthcare systems.

  4. Healing ministry and palliative care in Christianity.

    Science.gov (United States)

    Jayard, S Stephen; Irudayadason, Nishant A; Davis, J Charles

    2017-01-01

    Death is inevitable, but that does not mean it can be planned or imposed. It is an ethical imperative that we attend to the unbearable pain and suffering of patients with incurable and terminal illnesses. This is where palliative care plays a vital role. Palliative care has been growing faster in the world of medicine since its emergence as a specialty in the last decade. Palliative care helps to reduce physical pain while affirming the aspect of human suffering and dying as a normal process. The goal of palliative care is to improve the quality of life both of the patient and the family. Palliative care resonates with the healing ministry of Christianity that affirms the sanctity and dignity of human life from the moment of conception to natural death. Christianity is convinced that patients at the very end of their lives, with all their ailments and agonies, are still people who have been created in the image and likeness of God. The human person is always precious, even when marked by age and sickness. This is one of the basic convictions that motivate Christians to take care of the sick and the dying. Palliative care is a great opportunity for Christians to manifest God's unfailing love for the terminally ill and the dying.

  5. An Innovative Role for Faith Community Nursing: Palliative Care Ministry.

    Science.gov (United States)

    Lentz, Judy C

    Although the specialty of palliative nursing and palliative care continues to grow in hospital and outpatient settings, a paucity of home-based palliative services remains. This article discusses a new paradigm of faith-based palliative care ministry using faith community nurses (FCNs). Under the leadership of a palliative care doula (a nurse expert in palliative care), nurses in the faith community can offer critical support to those with serious illness. Models such as this provide stimulating content for FCN practice and opportunity to broaden health ministry within faith communities.

  6. Impact of Palliative Care Screening and Consultation in the ICU: A Multihospital Quality Improvement Project.

    Science.gov (United States)

    Zalenski, Robert J; Jones, Spencer S; Courage, Cheryl; Waselewsky, Denise R; Kostaroff, Anna S; Kaufman, David; Beemath, Afzal; Brofman, John; Castillo, James W; Krayem, Hicham; Marinelli, Anthony; Milner, Bradley; Palleschi, Maria Teresa; Tareen, Mona; Testani, Sheri; Soubani, Ayman; Walch, Julie; Wheeler, Judy; Wilborn, Sonali; Granovsky, Hanna; Welch, Robert D

    2017-01-01

    There are few multicenter studies that examine the impact of systematic screening for palliative care and specialty consultation in the intensive care unit (ICU). To determine the outcomes of receiving palliative care consultation (PCC) for patients who screened positive on palliative care referral criteria. In a prospective quality assurance intervention with a retrospective analysis, the covariate balancing propensity score method was used to estimate the conditional probability of receiving a PCC and to balance important covariates. For patients with and without PCCs, outcomes studied were as follows: 1) change to "do not resuscitate" (DNR), 2) discharge to hospice, 3) 30-day readmission, 4) hospital length of stay (LOS), 5) total direct hospital costs. In 405 patients with positive screens, 161 (40%) who received a PCC were compared to 244 who did not. Patients receiving PCCs had higher rates of DNR-adjusted odds ratio (AOR) = 7.5; 95% CI 5.6-9.9) and hospice referrals-(AOR = 7.6; 95% CI 5.0-11.7). They had slightly lower 30-day readmissions-(AOR = 0.7; 95% CI 0.5-1.0); no overall difference in direct costs or LOS was found between the two groups. When patients receiving PCCs were stratified by time to PCC initiation, early consultation-by Day 4 of admission-was associated with reductions in LOS (1.7 days [95% CI -3.1, -1.2]) and average direct variable costs (-$1815 [95% CI -$3322, -$803]) compared to those who received no PCC. Receiving a PCC in the ICUs was significantly associated with more frequent DNR code status and hospice referrals, but not 30-day readmissions or hospital utilization. Early PCC was associated with significant LOS and direct cost reductions. Providing PCC early in the ICU should be considered. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  7. Redefining diagnosis-related groups (DRGs) for palliative care - a cross-sectional study in two German centres.

    Science.gov (United States)

    Vogl, Matthias; Schildmann, Eva; Leidl, Reiner; Hodiamont, Farina; Kalies, Helen; Maier, Bernd Oliver; Schlemmer, Marcus; Roller, Susanne; Bausewein, Claudia

    2018-04-05

    Hospital costs and cost drivers in palliative care are poorly analysed. It remains unknown whether current German Diagnosis-Related Groups, mainly relying on main diagnosis or procedure, reproduce costs adequately. The aim of this study was therefore to analyse costs and reimbursement for inpatient palliative care and to identify relevant cost drivers. Two-center, standardised micro-costing approach with patient-level cost calculations and analysis of the reimbursement situation for patients receiving palliative care at two German hospitals (7/2012-12/2013). Data were analysed for the total group receiving hospital care covering, but not exclusively, palliative care (group A) and the subgroup receiving palliative care only (group B). Patient and care characteristics predictive of inpatient costs of palliative care were derived by generalised linear models and investigated by classification and regression tree analysis. Between 7/2012 and 12/2013, 2151 patients received care in the two hospitals including, but not exclusively, on the PCUs (group A). In 2013, 784 patients received care on the two PCUs only (group B). Mean total costs per case were € 7392 (SD 7897) (group A) and € 5763 (SD 3664) (group B), mean total reimbursement per case € 5155 (SD 6347) (group A) and € 4278 (SD 2194) (group B). For group A/B on the ward, 58%/67% of the overall costs and 48%/53%, 65%/82% and 64%/72% of costs for nursing, physicians and infrastructure were reimbursed, respectively. Main diagnosis did not significantly influence costs. However, duration of palliative care and total length of stay were (related to the cost calculation method) identified as significant cost drivers. Related to the cost calculation method, total length of stay and duration of palliative care were identified as significant cost drivers. In contrast, main diagnosis did not reflect costs. In addition, results show that reimbursement within the German Diagnosis-Related Groups system does not

  8. The Refusal of Palliative Radiation in Metastatic Non-Small Cell Lung Cancer and Its Prognostic Implications.

    Science.gov (United States)

    Stavas, Mark J; Arneson, Kyle O; Ning, Matthew S; Attia, Albert A; Phillips, Sharon E; Perkins, Stephanie M; Shinohara, Eric T

    2015-06-01

    Patients with metastatic non-small cell lung cancer (NSCLC) have limited survival. Population studies have evaluated the impact of radiation refusal in the curative setting; however, no data exist concerning the prognostic impact of radiation refusal in the palliative care setting. To investigate the patterns of radiation refusal in newly diagnosed patients with metastatic NSCLC. Patients with Stage IV NSCLC diagnosed between 1988 and 2010 were identified in the Surveillance, Epidemiology, and End Results database. Univariate and multivariate analyses were used to identify predictors for refusal of radiation and the impact of radiation and refusal on survival in the palliative setting. A total of 285,641 patients were initially included in the analysis. Palliative radiation was recommended in 42% and refused by 3.1% of patients. Refusal rates remained consistent across included years of study. On multivariate analysis, older, nonblack/nonwhite, unmarried females were more likely to refuse radiation (P refusing radiation was three months vs. five months for those receiving radiation and two months for those whom radiation was not recommended. Patients with metastatic NSCLC who refuse recommended palliative radiation have a poor survival. Radiation refusal or the recommendation against treatment can serve as a trigger for integrating palliative care services sooner and contributes greatly to prognostic awareness. Further investigation into this survival difference and the factors behind refusal are warranted. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  9. Development of a Patient-Reported Palliative Care-Specific Health Classification System: The POS-E.

    Science.gov (United States)

    Dzingina, Mendwas; Higginson, Irene J; McCrone, Paul; Murtagh, Fliss E M

    2017-06-01

    Generic preference-based measures are commonly used to estimate quality-adjusted life-years (QALYs) to inform resource-allocation decisions. However, concerns have been raised that generic measures may be inappropriate in palliative care. Our objective was to derive a health-state classification system that is amenable to valuation from the ten-item Palliative Care Outcome Scale (POS), a widely used patient-reported outcome measure in palliative care. The dimensional structure of the original POS was assessed using factor analysis. Item performance was assessed, using Rasch analysis and psychometric criteria, to enable the selection of items that represent the dimensions covered by the POS. Data from six studies of patients receiving palliative care were combined (N = 1011) and randomly split into two halves for development and validation. Analysis was undertaken on the development data, and results were validated by repeating the analysis with the validation dataset. Following Rasch and factor analyses, a classification system of seven items was derived. Each item had two to three levels. Rasch threshold map helped identify a set of 14 plausible health states that can be used for the valuation of the instrument to derive a preference-based index. Combining factor analysis and Rasch analysis with psychometric criteria provides a valid method of constructing a classification system for a palliative care-specific preference-based measure. The next stage is to obtain preference weights so the measure can be used in economic evaluations in palliative care.

  10. Pediatric Palliative Sedation Therapy with Propofol: Recommendations Based on Experience in Children with Terminal Cancer

    Science.gov (United States)

    Hamilton, Hunter; Faughnan, Lane G.; Johnson, Liza-Marie; Baker, Justin N.

    2012-01-01

    Abstract Background The use of propofol for palliative sedation of children is not well documented. Objective Here we describe our experience with the use of propofol palliative sedation therapy (PST) to alleviate intractable end-of-life suffering in three pediatric oncology patients, and propose an algorithm for the selection of such candidates for PST. Patients and Methods We identified inpatients who had received propofol PST within 20 days of death at our institution between 2003 and 2010. Their medical records were reviewed for indicators of pain, suffering, and sedation from 48 hours before PST to the time of death. We also tabulated consumption of opioids and other symptom management medications, pain scores, and adverse events of propofol, and reviewed clinical notes for descriptors of suffering and/or palliation. Results Three of 192 (1.6%) inpatients (aged 6–15 years) received propofol PST at the end of life. Consumption of opioids and other supportive medications decreased during PST in two cases. In the third case, pain scores remained high and sedation was the only effective comfort measure. Clinical notes suggested improved comfort and rest in all patients. Propofol infusions were continued until the time of death. Conclusions Our experience demonstrates that propofol PST is a useful palliative option for pediatric patients experiencing intractable suffering at the end of life. We describe an algorithm that can be used to identify such children who are candidates for PST. PMID:22731512

  11. A comparative study of the palliative care needs of heart failure and cancer patients.

    LENUS (Irish Health Repository)

    O'Leary, Norma

    2012-02-01

    AIMS: Studies suggest that patients with advanced heart failure (HF) have unmet palliative care (PC) needs. However, many of these studies have been retrospective or based on patients receiving poorly coordinated ad hoc care. We aimed to demonstrate whether the PC needs of patients with advanced HF receiving specialist multidisciplinary coordinated care are similar to cancer patients deemed to have specialist PC needs; thereby justifying the extension of specialist PC services to HF patients. METHODS AND RESULTS: This was a cross-sectional comparative cohort study of 50 HF patients and 50 cancer patients, using quantitative and qualitative methods. Both patient cohorts were statistically indistinguishable in terms of symptom burden, emotional wellbeing, and quality-of-life scores. HF patients had good access to community and social support. HF patients particularly valued the close supervision, medication monitoring, ease of access to service, telephone support, and key worker provided at the HF unit. A small subset of patients had unmet PC needs. A palliative transition point is described. CONCLUSION: HF patients should not be excluded from specialist PC services. However, the majority of their needs can be met at a HF unit. Recognition of the palliative transition point may be key to ensuring that end-of-life issues are addressed. The palliative transition point needs further evaluation.

  12. A Survey of Hospice and Palliative Care Physicians Regarding Palliative Sedation Practices.

    Science.gov (United States)

    Lux, Michael R; Protus, Bridget McCrate; Kimbrel, Jason; Grauer, Phyllis

    2017-04-01

    Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. To determine the preferred medications physicians use when implementing palliative sedation. An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.

  13. Continuous palliative sedation: not only a response to physical suffering.

    Science.gov (United States)

    Swart, Siebe J; van der Heide, Agnes; van Zuylen, Lia; Perez, Roberto S G M; Zuurmond, Wouter W A; van der Maas, Paul J; van Delden, Johannes J M; Rietjens, Judith A C

    2014-01-01

    Palliative sedation is a medical intervention aimed at relieving symptoms that can no longer be controlled by conventional treatment. Ample knowledge is available regarding the nature of such symptoms, but there is no in-depth information regarding how health care workers decide about palliative sedation. The study objective was to investigate considerations concerning the indications for continuous palliative sedation (CPS) and issues that influence these considerations. The study consisted of qualitative interviews regarding patients who had recently received CPS. The study involved physicians and nurses working in general practice, nursing homes, and hospitals. Analyses by a multidisciplinary research team used the constant comparative method. Together with physical symptoms, psychological and existential suffering may combine to produce a refractory state for which other treatment options than CPS were not available or considered inappropriate. A limited life expectancy was by many considered crucial (e.g., to avoid hastening death) and by some less important (e.g., because the patient's suffering was considered to be key). Issues influencing the decision to use CPS related to patient preferences (e.g., dignity, not wanting to experience further suffering) or family issues (impact of suffering on family, family requesting CPS). The indication for CPS typically originates from physical symptoms and nonphysical problems producing a refractory state in which a patient suffers unbearably. In such states, preferences of patients and families and the life expectancy criterion are weighed against the severity of refractory symptoms. Therefore the use of CPS is not only a response to the physical suffering of patients in the dying phase.

  14. Spinal Cord Doses in Palliative Lung Radiotherapy Schedules

    International Nuclear Information System (INIS)

    Ffrrcsi, F.H.; Parton, C.

    2006-01-01

    Aim: We aim to check the safety of the standard palliative radiotherapy techniques by using the Linear quadratic model for a careful estimation of the doses received by the spinal cord, in all standard palliative lung radiotherapy fields and fractionation. Material and Methods: All patients surveyed at this prospective audit were treated with palliative chest radio-therapy for lung cancer over a period from January to June 2005 by different clinical oncology specialists within the department. Radiotherapy field criteria were recorded and compared with the recommended limits of the MRC trial protocols for the dose and fractionation prescribed. Doses delivered to structures off the field central axis were estimated using a standard CT scan of the chest. Dose estimates were made using an SLPLAN planning system. As unexpected spinal cord toxicity has been reported after hypo fractionated chest radiotherapy, a sagittal view was used to calculate the isodoses along the length of the spinal cord that could lie within the RT field. Equivalent dose estimates are made using the Linear Quadratic Equivalent Dose formula (LQED). The relative radiation sensitivity of spinal cord for myelopathy (the a/b dose) cord has been estimated as a/b = 1 Gy. Results: 17 Gy in 2 fraction and 39 Gy in 13 fraction protocols have spinal cord equivalent doses (using the linear-quadratic model) that lie within the conventional safe limits of 50 Gy in 25 fractions for the 100% isodose. However when the dosimetry is modelled for a 6 MV 100 cm isocentric linac in 3 dimensions, and altered separations and air space inhomogeneity are considered, the D-Max doses consistently fall above this limit on our 3 model patients. Conclusion: The 17 Gy in 2 fraction and 39 Gy in 13 fraction protocol would risk spinal cord damage if the radio therapist was unaware of the potential spinal cord doses. Alterative doses are suggested below 15.5 Gy/ 2 fractions (7 days apart) would be most acceptable

  15. Companion animals and well-being in palliative care nursing: a literature review.

    Science.gov (United States)

    MacDonald, Julie M; Barrett, David

    2016-02-01

    To evaluate and critique current knowledge regarding the role of animals in palliative care. To explore the impact that animals may have on the well-being of individuals and to identify gaps in the evidence base. There is recognition that having a companion animal will affect patient experience. Similarly, there has been some previous exploration on the use of specific animal assisted therapies for patients with different healthcare needs. A literature review was conducted to identify published and unpublished research about companion animals or animal-assisted therapy in palliative and/or end-of-life care. The primary objective was to explore the impact of animals on well-being at the end of life. A search for literature was carried out using a variety of databases and different combinations of search terms linked to animals in palliative care. Included works were critically appraised and thematically analysed. A limited range of literature was identified. From the small number of studies included in the review (n = 4), it appears that there is some evidence of animals (either companion animals or those used specifically to enhance care) having a positive impact on the patient experience. This study suggests that animals play a large part in the lives of people receiving palliative care. Using animals to support care may also offer some benefits to the patient experience. However, there appears to be a dearth of high-quality literature in this area. More research is therefore required. Nurses providing palliative care need to be aware of the part that a companion animal may play in the life of patients. There may also be the opportunity for nurses in some settings to integrate animal therapy into their provision of palliative care. © 2015 John Wiley & Sons Ltd.

  16. Integrating Palliative Care Services in Ambulatory Oncology: An Application of the Edmonton Symptom Assessment System.

    Science.gov (United States)

    Rauenzahn, Sherri L; Schmidt, Susanne; Aduba, Ifeoma O; Jones, Jessica T; Ali, Nazneen; Tenner, Laura L

    2017-04-01

    Research in palliative care demonstrates improvements in overall survival, quality of life, symptom management, and reductions in the cost of care. Despite the American Society of Clinical Oncology recommendation for early concurrent palliative care in patients with advanced cancer and high symptom burden, integrating palliative services is challenging. Our aims were to quantitatively describe the palliative referral rates and symptom burden in a South Texas cancer center and establish a palliative referral system by implementing the Edmonton Symptom Assessment Scale (ESAS). As part of our Plan-Do-Study-Act process, all staff received an educational overview of the ESAS tool and consultation ordering process. The ESAS form was then implemented across five ambulatory oncology clinics to assess symptom burden and changes therein longitudinally. Referral rates and symptom assessment scores were tracked as metrics for quality improvement. On average, one patient per month was referred before implementation of the intervention compared with 10 patients per month after implementation across all clinics. In five sample clinics, 607 patients completed the initial assessment, and 430 follow-up forms were collected over 5 months, resulting in a total of 1,037 scores collected in REDCap. The mean ESAS score for initial patient visits was 20.0 (standard deviation, 18.1), and referred patients had an initial mean score of 39.0 (standard deviation, 19.0). This project highlights the low palliative care consultation rate, high symptom burden of oncology patients, and underuse of services by oncologists despite improvements with the introduction of a symptom assessment form and referral system.

  17. Specialist pediatric palliative care prescribing practices: A large 5-year retrospective audit

    Directory of Open Access Journals (Sweden)

    Anuja Damani

    2016-01-01

    Full Text Available Introduction: There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary, dosing schedules, and prescription guidelines. This study is a retrospective audit of prescribing practices of a specialist palliative care service situated in a tertiary cancer center. Methods: A total of 1135 medication records of children receiving specialist pediatric palliative care services were audited for 5 years (2010-2014 to evaluate prescribing practices in children with advanced cancer. Results: A total of 51 types of drugs were prescribed with an average of 4.2 drugs per prescription. 66.9% of the prescriptions had paracetamol, and 33.9% of the prescriptions had morphine. Most common nonsteroidal anti-inflammatory drugs prescribed was ibuprofen (23.9%, and more than 50% of the prescriptions had aperients. The most commonly prescribed aperient was a combination of liquid paraffin and sodium-picosulfate. Dexamethasone was prescribed in 51.9% of patients and in most cases this was part of oral chemotherapy regimen. Generic names in prescription were used only in 33% of cases, and adverse effects of the drugs were documented in only 9% of cases. In 25% of cases, noncompliance to the WHO prescription guidelines was seen, and patient compliance to prescription was seen in 40% of cases. Conclusions: Audit of the prescribing practices in specialist pediatric palliative care service shows that knowledge of pediatric palliative care formulary, rational drug use, dosing, and prescribing guidelines is essential for symptom control in children with advanced life-limiting illness. Noncompliance to WHO prescribing guidelines in one fourth of cases and using nongeneric names in two-thirds of prescription indicates poor prescribing practices and warrants prescriber education. Prescription

  18. [Neonatal palliative care and culture].

    Science.gov (United States)

    Bétrémieux, P; Mannoni, C

    2013-09-01

    The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. Copyright © 2013 Elsevier Masson SAS. All rights reserved.

  19. Hope, Symptoms, and Palliative Care.

    Science.gov (United States)

    Davis, Mellar P; Lagman, Ruth; Parala, Armida; Patel, Chirag; Sanford, Tanya; Fielding, Flannery; Brumbaugh, Anita; Gross, James; Rao, Archana; Majeed, Sumreen; Shinde, Shivani; Rybicki, Lisa A

    2017-04-01

    Hope is important to patients with cancer. Identifying factors that influence hope is important. Anxiety, depression, fatigue, and pain are reported to impair hope. The objective of this study was to determine whether age, gender, marital status, duration of cancer, symptoms, or symptom burden measured by the sum of severity scores on the Edmonton Symptom Assessment Scale (ESAS) correlated with hope measured by the Herth Hope Index (HHI). Patients with advanced cancer in a palliative care unit participated. Demographics including age, gender, marital status, cancer site, and duration of cancer were collected. Individuals completed the ESAS and HHI. Spearman correlation and linear regression were used to assess associations adjusting for gender (male vs female), age ( 12 months). One hundred and ninety-seven were participated in the study, of which 55% were female with a mean age of 61 years (standard deviation 11). Hope was not associated with gender, age, marital status, or duration of cancer. In univariable analysis, hope inversely correlated with ESAS score (-0.28), lack of appetite (-0.22), shortness of breath (-0.17), depression (-0.39), anxiety (-0.32), and lack of well-being (-0.33); only depression was clinically relevant. In multivariable analysis, total symptom burden weakly correlated with hope; only depression remained clinically significant. This study found correlation between symptom burden and hope was not clinically relevant but was so for depression. Among 9 ESAS symptoms, only depression had a clinically relevant correlation with hope.

  20. Teleconsultation for integrated palliative care at home: A qualitative study

    NARCIS (Netherlands)

    van Gurp, J.; van Selm, M.; van Leeuwen, E.; Vissers, K.; Hasselaar, J.

    2016-01-01

    Background: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual

  1. Policy analysis: palliative care in Ireland.

    LENUS (Irish Health Repository)

    Larkin, P

    2014-03-01

    Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the \\'policy analysis triangle\\' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation.

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

    DEFF Research Database (Denmark)

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

    2002-01-01

    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......-based study of symptomatology in consecutive cancer patients in palliative care, achieving rather complete data from the participants. The symptomatology in these patients was very pronounced. The questionnaires were able to detect clinically important differences between places of service....

  3. Comparison of echocardiographic and cardiac magnetic resonance imaging measurements of functional single ventricular volumes, mass, and ejection fraction (from the Pediatric Heart Network Fontan Cross-Sectional Study).

    Science.gov (United States)

    Margossian, Renee; Schwartz, Marcy L; Prakash, Ashwin; Wruck, Lisa; Colan, Steven D; Atz, Andrew M; Bradley, Timothy J; Fogel, Mark A; Hurwitz, Lynne M; Marcus, Edward; Powell, Andrew J; Printz, Beth F; Puchalski, Michael D; Rychik, Jack; Shirali, Girish; Williams, Richard; Yoo, Shi-Joon; Geva, Tal

    2009-08-01

    Assessment of the size and function of a functional single ventricle (FSV) is a key element in the management of patients after the Fontan procedure. Measurement variability of ventricular mass, volume, and ejection fraction (EF) among observers by echocardiography and cardiac magnetic resonance imaging (CMR) and their reproducibility among readers in these patients have not been described. From the 546 patients enrolled in the Pediatric Heart Network Fontan Cross-Sectional Study (mean age 11.9 +/- 3.4 years), 100 echocardiograms and 50 CMR studies were assessed for measurement reproducibility; 124 subjects with paired studies were selected for comparison between modalities. Interobserver agreement for qualitative grading of ventricular function by echocardiography was modest for left ventricular (LV) morphology (kappa = 0.42) and weak for right ventricular (RV) morphology (kappa = 0.12). For quantitative assessment, high intraclass correlation coefficients were found for echocardiographic interobserver agreement (LV 0.87 to 0.92, RV 0.82 to 0.85) of systolic and diastolic volumes, respectively. In contrast, intraclass correlation coefficients for LV and RV mass were moderate (LV 0.78, RV 0.72). The corresponding intraclass correlation coefficients by CMR were high (LV 0.96, RV 0.85). Volumes by echocardiography averaged 70% of CMR values. Interobserver reproducibility for the EF was similar for the 2 modalities. Although the absolute mean difference between modalities for the EF was small (<2%), 95% limits of agreement were wide. In conclusion, agreement between observers of qualitative FSV function by echocardiography is modest. Measurements of FSV volume by 2-dimensional echocardiography underestimate CMR measurements, but their reproducibility is high. Echocardiographic and CMR measurements of FSV EF demonstrate similar interobserver reproducibility, whereas measurements of FSV mass and LV diastolic volume are more reproducible by CMR.

  4. European Association for Palliative Care (EAPC) framework for palliative sedation: an ethical discussion.

    Science.gov (United States)

    Juth, Niklas; Lindblad, Anna; Lynöe, Niels; Sjöstrand, Manne; Helgesson, Gert

    2010-09-13

    The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care. We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why. The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.

  5. European Association for Palliative Care (EAPC framework for palliative sedation: an ethical discussion

    Directory of Open Access Journals (Sweden)

    Juth Niklas

    2010-09-01

    Full Text Available Abstract Background The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care. Discussion We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why. Conclusions The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.

  6. Continuous Palliative Sedation for Cancer and Noncancer Patients

    NARCIS (Netherlands)

    Swart, S.J.; Rietjens, J.A.C.; van Zuylen, L.; Zuurmond, W.W.A.; Perez, R.S.G.M.; van der Maas, P.J.; van Delden, J.J.M.; van der Heide, A.

    2012-01-01

    Context: Palliative care is often focused on cancer patients. Palliative sedation at the end of life is an intervention to address severe suffering in the last stage of life. Objectives: To study the practice of continuous palliative sedation for both cancer and noncancer patients. Methods: In 2008,

  7. Hope in palliative care: A longitudinal qualitative study

    NARCIS (Netherlands)

    Olsman, E.

    2015-01-01

    This thesis describes hope in palliative care patients, their family members and their healthcare professionals. An interpretative synthesis of the literature (chapter 2) and a metaphor analysis of semi-structured interviews with palliative care professionals (chapter 3) highlight palliative care

  8. Surgical palliation of unresectable pancreatic head cancer in elderly patients

    Science.gov (United States)

    Hwang, Sang Il; Kim, Hyung Ook; Son, Byung Ho; Yoo, Chang Hak; Kim, Hungdai; Shin, Jun Ho

    2009-01-01

    AIM: To determine if surgical biliary bypass would provide improved quality of residual life and safe palliation in elderly patients with unresectable pancreatic head cancer. METHODS: Nineteen patients, 65 years of age or older, were managed with surgical biliary bypass (Group A). These patients were compared with 19 patients under 65 years of age who were managed with surgical biliary bypass (Group B). In addition, the results for group A were compared with those obtained from 17 patients, 65 years of age or older (Group C), who received percutaneous transhepatic biliary drainage to evaluate the quality of residual life. RESULTS: Five patients (26.0%) in Group A had complications, including one intraabdominal abscess, one pulmonary atelectasis, and three wound infections. One death (5.3%) occurred on postoperative day 3. With respect to morbidity, mortality, and postoperative hospitalization, no statistically significant difference was noted between Groups A and B. The number of readmissions and the rate of recurrent jaundice were lower in Group A than in Group C, to a statistically significant degree (P = 0.019, P = 0.029, respectively). The median hospital-free survival period and the median overall survival were also significantly longer in Group A (P = 0.001 and P < 0.001, respectively). CONCLUSION: Surgical palliation does not increase the morbidity or mortality rates, but it does increase the survival rate and improve the quality of life in elderly patients with unresectable pancreatic head cancer. PMID:19248198

  9. Towards a standardised approach for evaluating guidelines and guidance documents on palliative sedation: study protocol.

    Science.gov (United States)

    Abarshi, Ebun; Rietjens, Judith; Caraceni, Augusto; Payne, Sheila; Deliens, Luc; Van Den Block, Lieve

    2014-01-01

    Sedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials. According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation. A multidisciplinary and international group of palliative care researchers, identified themes and clinical issues on palliative sedation based on expert consultations and evidence drawn from the EAPC (European Association of Palliative Care) framework for palliative sedation and AGREE II (Appraisal Guideline Research and Evaluation) instrument for guideline assessment. The most relevant themes were selected and built into a comprehensive checklist. This was tested on people working closely with practitioners and patients, for user-friendliness and comprehensibility, and modified where necessary. Next, a systematic search was conducted for guidelines in English, Dutch, Flemish, or Italian. The search was performed in multiple databases (PubMed, CancerLit, CNAHL, Cochrane Library, NHS Evidence and Google Scholar), and via other Internet resources. Hereafter, the final version of the checklist will be used to extract data from selected literature, and the same will be compiled, entered into SPSS, cleaned and analysed systematically for publication. We have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and

  10. [For the betterment of home palliative care].

    Science.gov (United States)

    Midorikawa, Yasuhiko; Iiduka, Masashi

    2010-12-01

    The problems we have identified to overcome for a betterment of home palliative care were as follows:(1) Staffs' low level of knowledge and a lack of interest in home care, (2) Lack of cooperation between hospital and clinic, (3) Hard to keep the medical and caregiver staffs employed in the home care settings and a technical training is behind, (4) Insufficient cooperative networks for elderly care and welfare in the region, and (5) Misunderstanding of home palliative care by patient, family and people in the region. It is important to solve these problems one by one for a betterment of home palliative care. In this paper, we reported these problems through actual activities of our hospital and Iwaki city, and we propose to deal with them.

  11. Wiisokotaatiwin: development and evaluation of a community-based palliative care program in Naotkamegwanning First Nation.

    Science.gov (United States)

    Nadin, Shevaun; Crow, Maxine; Prince, Holly; Kelley, Mary Lou

    2018-04-01

    Approximately 474 000 Indigenous people live in 617 First Nations communities across Canada; 125 of those communities are located in Ontario, primarily in rural and remote areas. Common rural health challenges, including for palliative care, involve quality and access. The need for culturally relevant palliative care programs in First Nations communities is urgent because the population is aging with a high burden of chronic and terminal disease. Because local palliative care is lacking, most First Nations people now leave their culture, family and community to receive care in distant hospitals or long-term care homes. Due to jurisdictional issues, a policy gap exists where neither federal nor provincial governments takes responsibility for funding palliative care in First Nations communities. Further, no Canadian program models existed for how different levels of government can collaborate to fund and deliver palliative care in First Nations communities. This article describes an innovative, community-based palliative care program (Wiisokotaatiwin) developed in rural Naotkamegwanning, and presents the results of a process evaluation of its pilot implementation. The evaluation aimed to (i) document the program's pilot implementation, (ii) assess progress toward intended program outcomes and (iii) assess the perceived value of the program. The Wiisokotaatiwin Program was developed and implemented over 5 years using participatory action research (http://www.eolfn.lakeheadu.ca). A mixed-method evaluation approach was adopted. Descriptive data were extracted from program documents (eg client registration forms). Client tracking forms documented service provision data for a 4-month sample period. Quantitative and qualitative data were collected through client and family member questionnaires (n=7) and healthcare provider questionnaires (n=22). A focus group was conducted with the program leadership team responsible for program development. Quantitative data were

  12. Palliative care nurses' views on euthanasia.

    Science.gov (United States)

    Verpoort, Charlotte; Gastmans, Chris; Dierckx de Casterlé, Bernadette

    2004-09-01

    In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.

  13. Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals

    Directory of Open Access Journals (Sweden)

    Senthil P Kumar

    2011-01-01

    Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.

  14. Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.

    Science.gov (United States)

    Busolo, David; Woodgate, Roberta

    2015-01-01

    The objective of this review is to synthesize the best available evidence on palliative care experiences of adult cancer patients from ethnocultural groups.More specifically, this systematic review seeks to answer the following questions:1. What are the palliative care experiences of adult cancer patients from diverse ethnocultural groups?2. What meanings do adult patients with cancer from diverse ethnocultural groups assign to their experiences with palliative care? Globally, over 20.4 million people need palliative care services annually. The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer. With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise. Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services. Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups. Sometimes these challenges are believed to be due to cultural incompetence of the care provider. When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue. Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion. Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and

  15. Mobile Technology Applications in Cancer Palliative Care.

    Science.gov (United States)

    Freire de Castro Silva, Sandro Luís; Gonçalves, Antônio Augusto; Cheng, Cezar; Fernandes Martins, Carlos Henrique

    2018-01-01

    Mobile devices frequently used in other specialties can find great utility in palliative care. For healthcare professionals, the use of mobile technology not only can bring additional resources to the care, but it can actually radically change the cancer remote care practices. The Brazilian National Cancer Institute (INCA) has developed the largest cancer home care program in Latin America, which currently benefits more than 500 patients. The purpose of this paper is to show the development of an ICT environment of mobile applications developed to support the palliative cancer care program at INCA.

  16. Gastric carcinoma: when is palliative gastrectomy justified?

    Directory of Open Access Journals (Sweden)

    Hubert Scheidbach

    2011-12-01

    Full Text Available Gastric carcinoma is frequently diagnosed with an advanced stage of non-curable tumor growth characterized by infiltration of the gastric serosa, peritoneal tumor spread and/or metastases within lymph nodes and liver. Currently, there is a controversy on the value of palliative resection with regard to the safety and benefit to the patient outcome. Based on the available literature, this overview summarizes the various aspects and interprets the limited data on the palliative resection of gastric carcinoma. It turns out that the available study results may indicate potential for an improved quality of life and a prolongation of survival if an acceptable morbidity and mortality are present.

  17. Patient-Related Determinants of the Administration of Continuous Palliative Sedation in Hospices and Palliative Care Units: A Prospective, Multicenter, Observational Study.

    Science.gov (United States)

    van Deijck, Rogier H P D; Hasselaar, Jeroen G J; Verhagen, Stans C A H H V M; Vissers, Kris C P; Koopmans, Raymond T C M

    2016-05-01

    Knowledge of determinants that are associated with the administration of continuous palliative sedation (CPS) helps physicians identify patients who are at risk of developing refractory symptoms, thereby enabling proactive care planning. This study aims to explore which patient-related factors at admission are associated with receiving CPS later in the terminal phase of life. A prospective multicenter observational study was performed in six Dutch hospices and three nursing home-based palliative care units. The association between patient-related variables at admission (age, gender, diagnosis, use of opioids or psycholeptics, number of medications, Karnofsky Performance Status scale score, Edmonton Symptom Assessment System distress score, and Glasgow Coma Scale score) and the administration of CPS at the end of life was analyzed. A total of 467 patients died during the study period, of whom 130 received CPS. In univariate analysis, statistically significant differences were noted between the sedated and nonsedated patients with respect to younger age (P = 0.009), malignancy as a diagnosis (P = 0.05), higher Karnofsky Performance Status score (P = 0.03), the use of opioids (P Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  18. What is a 'secure base' when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care.

    Science.gov (United States)

    Milberg, A; Wåhlberg, R; Jakobsson, M; Olsson, E-C; Olsson, M; Friedrichsen, M

    2012-08-01

    Attachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a 'secure base' (a central concept within the theory). Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed with deductive qualitative content analysis. Informants expressed the relevance of sensing security during palliative home care because death and dying were threats that contributed to vulnerability. Palliative home care could foster a feeling of security and provide a secure base. This was facilitated when informants had trust in staff (e.g. due to availability and competence in providing symptom relief), felt recognised as individuals and welcomed to contact the team in times of needs. Being comfortable, informed and having an everyday life also contributed to a perception of palliative home care as a secure base. Family members stressed the importance of being relieved from responsibilities that were too heavy. The underlying meanings of experiencing palliative home care as a secure base involved gaining a sense of control and of inner peace, perceiving that despite a demanding and changed life situation, one could continue partially being oneself and having something to hope for, even if this no longer concerned cure for the ill person. Important aspects of palliative home care as providing a secure base were identified and these have implications for clinical practice. Copyright © 2011 John Wiley & Sons, Ltd.

  19. Effect of nutritional support on terminally ill patients with cancer in a palliative care unit.

    Science.gov (United States)

    Amano, Koji; Morita, Tatsuya; Baba, Mika; Kawasaki, Muneyoshi; Nakajima, Shinichiro; Uemura, Minako; Kobayashi, Yuka; Hori, Moeko; Wakayama, Hiroshi

    2013-11-01

    The role of nutritional support on terminally ill patients with cancer in a palliative care unit has not been clarified. A total of 63 patients were retrospectively investigated; the patients receiving individualized nutritional support (intervention group [n = 22]) were compared to the others (control group [n = 41]). The intervention group received individualized nutritional support. There were no significant differences in the characteristics of patients between the groups. The prevalence of bedsores was significantly lower in the intervention group (14% vs 46%, P = .012). The prevalence of edema and the use of antibiotic therapies tended to be lower in the intervention group than in the control group (36% vs 54%, P = .19; 14% vs 27%, P = .34, respectively). Some terminally ill patients with cancer in a palliative care unit might benefit from nutritional support.

  20. Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents.

    Science.gov (United States)

    Neilson, Sue J; Gibson, Faith; Greenfield, Sheila M

    2015-03-01

    This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members.

  1. Continuous Palliative Sedation for Existential Distress? A Survey of Canadian Palliative Care Physicians' Views.

    Science.gov (United States)

    Voeuk, Anna; Nekolaichuk, Cheryl; Fainsinger, Robin; Huot, Ann

    2017-01-01

    Palliative sedation can be used for refractory symptoms during end-of-life care. However, continuous palliative sedation (CPS) for existential distress remains controversial due to difficulty determining when this distress is refractory. The aim was to determine the opinions and practices of Canadian palliative care physicians regarding CPS for existential distress. A survey focusing on experience and views regarding CPS for existential distress was sent to 322 members of the Canadian Society of Palliative Care Physicians. Eighty-one surveys returned (accessible target, 314), resulting in a response rate of 26%. One third (31%) of the respondents reported providing CPS for existential distress. On a 5-point Likert-type scale, 40% of participants disagreed, while 43% agreed that CPS could be used for existential distress alone. Differing opinions exist regarding this complex and potentially controversial issue, necessitating the education of health-care professionals and increased awareness within the general public.

  2. 'Life is still worth living': a pilot exploration of self-reported resources of palliative care patients

    NARCIS (Netherlands)

    Warmenhoven, F.; Lucassen, P.L.; Vermandere, M.; Aertgeerts, B.; Weel, C. van; Vissers, K.C.; Prins, J.B.

    2016-01-01

    BACKGROUND: Facing a terminal illness can be highly stressful and palliative care patients frequently suffer from mood symptoms. The focus of health care is often on treating symptoms whereas health-promoting factors receive less attention. The aim of this study was to explore the views of

  3. Kenya Hospices and Palliative Care Association: integrating palliative care in public hospitals in Kenya.

    Science.gov (United States)

    Ali, Zipporah

    2016-01-01

    In Kenya, cancers as a disease group rank third as a cause of death after infectious and cardiovascular diseases. It is estimated that the annual incidence of cancer is about 37,000 new cases with an annual mortality of 28,000 cases (Kenya National Cancer Control Strategy 2010). The incidence of non-communicable diseases accounts for more than 50% of total hospital admissions and over 55% of hospital deaths (Kenya National Strategy for the Prevention and Control of Non Communicable Diseases 2015-2020). The prevalence of HIV is 6.8 (KIAS 2014). Most of these patients will benefit from palliative care services, hence the need to integrate palliative care services in the public healthcare system. The process of integrating palliative care in public hospitals involved advocacy both at the national level and at the institutional level, training of healthcare professionals, and setting up services within the hospitals that we worked with. Technical support was provided to each individual institution as needed. Eleven provincial hospitals across the country have now integrated palliative care services (Palliative Care Units) and are now centres of excellence. Over 220 healthcare providers have been trained, and approximately, over 30,000 patients have benefited from these services. Oral morphine is now available in the hospital palliative care units. As a success of the pilot project, Kenya Hospices and Palliative Care Association (KEHPCA) is now working with the Ministry of Health Kenya to integrate palliative care services in 30 other county hospitals across the country, thus ensuring more availability and access to more patients. Other developing countries can learn from Kenya's successful experience.

  4. Qualitative Research in Palliative Care: Applications to Clinical Trials Work.

    Science.gov (United States)

    Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R

    2017-08-01

    While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.

  5. Palliative Care Leadership Centers Are Key To The Diffusion Of Palliative Care Innovation.

    Science.gov (United States)

    Cassel, J Brian; Bowman, Brynn; Rogers, Maggie; Spragens, Lynn H; Meier, Diane E

    2018-02-01

    Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.

  6. Developing a costing framework for palliative care services.

    Science.gov (United States)

    Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R

    2014-10-01

    Palliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. The purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. The project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. In this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. A standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  7. Strategies for Introducing Outpatient Specialty Palliative Care in Gynecologic Oncology.

    Science.gov (United States)

    Hay, Casey M; Lefkowits, Carolyn; Crowley-Matoka, Megan; Bakitas, Marie A; Clark, Leslie H; Duska, Linda R; Urban, Renata R; Creasy, Stephanie L; Schenker, Yael

    2017-09-01

    Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.

  8. Emotionality and teamwork in palliative nursing

    DEFF Research Database (Denmark)

    Nickelsen, Niels Christian

    This paper discusses the performance of palliative support teams based in an empirical study in a hospice in Denmark. The analytic strategy is based in science and technology studies (STS). The study was carried out as a number of meetings among the researcher and five non-consolidated teams in s...

  9. Palliation of Dysphagia from Esophageal Cancer

    NARCIS (Netherlands)

    M.Y.V. Homs (Marjolein)

    2004-01-01

    textabstractThe prognosis of esophageal cancer is poor with a 5-year survival of 10-15%. In addition, over 50% of patients with esophageal cancer already have an inoperable disease at presentation. The majority of these patients require palliative treatment to relieve progressive dysphagia. Metal

  10. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,535 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  11. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 13:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,137 views 5: ... 24. RileyKidsVideo 216,139 views 4:24 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  12. Distress, Stress and Solidarity in Palliative Care.

    Science.gov (United States)

    deMontigny, Johanne

    1993-01-01

    Notes that role of psychologist on palliative care unit is to be there for terminally ill, their friends, and their families, both during the dying and the bereavement and for the caregiver team. Focuses on work of decoding ordinary words which for many patients hide painful past. Stresses necessity to remain open to unexpected. (Author/NB)

  13. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,802 views 5: ... University (NEOMED) 26,193 views 5:39 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  14. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,345 views 5: ... Health - Meriter 255,416 views 13:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  15. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... views 12:07 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,186 views 5: ... 24. RileyKidsVideo 216,780 views 4:24 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  16. Palliative care teams: effective through moral reflection.

    NARCIS (Netherlands)

    Hermsen, M.A.; Have, H.A.M.J. ten

    2005-01-01

    Working as a multidisciplinary or interdisciplinary team is an essential condition to provide good palliative care. This widespread assumption is based on the idea that teamwork makes it possible to address the various needs of the patient and family more effectively. This article is about teamwork

  17. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,462 views 5: ... Little Stars 12,462 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  18. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,573 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  19. Advances in pain control in palliative care

    African Journals Online (AJOL)

    2011-07-02

    Jul 2, 2011 ... pain evoked by light touch or pain evoked by change in temperature. This type of pain is .... the drugs; drug interactions; co-morbidities that can be alleviated by .... AIDS and cancer. • Because pain in palliative care is multi-.

  20. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,559 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  1. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 13:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,605 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  2. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... starting stop Loading... Watch Queue Queue __count__/__total__ It’s YouTube. Uninterrupted. Loading... Want music and videos with ... ads? Get YouTube Red. Working... Not now Try it free Find out why Close Pediatric Palliative Care: ...

  3. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,486 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  4. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 1:09:38 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,056 views 5: ... Little Stars 12,980 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  5. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... views 13:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,056 views 5: ... Medway CCG 311,087 views 27:40 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  6. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... views 11:08 Mia Tatun - Albany Medical Center Children's Hospital - Journeys Palliative Care Story - Duration: 3:32. ... 4:01 Mitochondrial Disease Patient Story - Cleveland Clinic Children's Hospital - Duration: 4:17. Cleveland Clinic 82,065 ...

  7. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,836 views 5: ... University (NEOMED) 26,193 views 5:39 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  8. Managing stress in a palliative care team.

    Science.gov (United States)

    Gupta, Vineeta; Woodman, Clare

    2010-12-01

    This article describes a strategy to reduce the high levels of stress experienced by community nurses in a children's palliative care team. The development, use and effectiveness of a problem-solving team intervention are illustrated by direct quotations from the nurses themselves.

  9. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... 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 License Standard YouTube License Show more Show ...

  10. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... patient's and family's experience with illness. Category Science & Technology License Standard YouTube License Show more Show less ... Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 27,094 views 5:39 Faces ...

  11. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,792 views 5: ... University (NEOMED) 26,193 views 5:39 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  12. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,517 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  13. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,776 views 5: ... Little Stars 12,680 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  14. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... is starting stop Loading... Watch Queue Queue __count__/__total__ It’s YouTube. Uninterrupted. Loading... Want music and videos with zero ads? Get YouTube Red. Working... Not now Try it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ...

  15. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,636 views 5: ... 27. HammondCare 29,011 views 22:27 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...

  16. Oesphageal Stenting for palliation of malignant mesothelioma

    Directory of Open Access Journals (Sweden)

    Rahamim Joseph

    2008-01-01

    Full Text Available Abstract Dyspahgia in patients with malignant mesothelioma is usually due to direct infiltration of the eosophagus by the tumour. It can be distressing for the patient and challenging for the physician to treat. We describe three cases in which this condition has been successfully palliated with self expanding esophageal stents.

  17. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 24. RileyKidsVideo 217,733 views 4:24 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,455 views 3:29 Portraits of ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,265 views 5: ...

  18. Palliative care in children with spinal muscular atrophy type I: What do they need?

    Science.gov (United States)

    García-Salido, Alberto; de Paso-Mora, María García; Monleón-Luque, Manuel; Martino-Alba, Ricardo

    2015-04-01

    Our aim was to describe the clinical evolution and needs of children with spinal muscular atrophy type I treated in a domiciliary palliative care program. We undertook a retrospective chart review of nine consecutive patients. Descriptions of the clinical and demographic profile of children with spinal muscular atrophy (SMA) type I were referred to a pediatric palliative care team (PPCT). Six males and three females were admitted to the PPCT, all before six months of age, except for one afflicted with SMA type I with respiratory distress. The median time of attention was 57 days (range 1-150). The domiciliary attention mainly consisted of respiratory care. The patient with SMA type I with respiratory distress required domiciliary mechanical ventilation by tracheotomy. In all cases, a nasogastric tube (NT) was indicated. As end-of-life care, eight required morphine to manage the dyspnea, four received it only by enteral (oral or NT) administration, and four received it first by enteral administration with continuous subcutaneous infusion (CSI) later. Three of the four patients with CSI also received benzodiazepines. While they were attended by the PPCT, none required hospital admission. All the patients died at home except for the one attended to for just one day. Domiciliary care for these patients is possible. The respiratory morbidity and its management are the main issues. Application of an NT is useful to maintain nutritional balance. Morphine administration is necessary to manage the dyspnea. Palliative sedation is not always necessary.

  19. Palliative chemotherapy and targeted therapies for esophageal and gastroesophageal junction cancer.

    Science.gov (United States)

    Janmaat, Vincent T; Steyerberg, Ewout W; van der Gaast, Ate; Mathijssen, Ron Hj; Bruno, Marco J; Peppelenbosch, Maikel P; Kuipers, Ernst J; Spaander, Manon Cw

    2017-11-28

    survival time was one month. Five studies in 750 participants contributed data to the comparison of palliative therapy versus best supportive care. We found a benefit in overall survival in favor of the group receiving palliative chemotherapy and/or targeted therapy compared to best supportive care (HR 0.81, 95% CI 0.71 to 0.92, high-quality evidence). Subcomparisons including only people receiving second-line therapies, chemotherapies, targeted therapies, adenocarcinomas, and squamous cell carcinomas all showed a similar benefit. The only individual agent that more than one study found to improve both overall survival and progression-free survival was ramucirumab. Palliative chemotherapy and/or targeted therapy increased the frequency of grade 3 or higher treatment-related toxicity. However, treatment-related deaths did not occur more frequently. Quality of life often improved in the arm with an additional agent. People who receive more chemotherapeutic or targeted therapeutic agents have an increased overall survival compared to people who receive less. These agents, administered as both first-line or second-line treatments, also led to better overall survival than best supportive care. With the exception of ramucirumab, it remains unclear which other individual agents cause the survival benefit. Although treatment-associated toxicities of grade 3 or more occurred more frequently in arms with an additional chemotherapy or targeted therapy agent, there is no evidence that palliative chemotherapy and/or targeted therapy decrease quality of life. Based on this meta-analysis, palliative chemotherapy and/or targeted therapy can be considered standard care for esophageal and gastroesophageal junction carcinoma.

  20. Palliative sedation: not just normal medical practice. Ethical reflections on the Royal Dutch Medical Association's guideline on palliative sedation.

    Science.gov (United States)

    Janssens, Rien; van Delden, Johannes J M; Widdershoven, Guy A M

    2012-11-01

    The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline.

  1. Practice and documentation of palliative sedation: a quality improvement initiative

    Science.gov (United States)

    McKinnon, M.; Azevedo, C.; Bush, S.H.; Lawlor, P.; Pereira, J.

    2014-01-01

    Background Palliative sedation (ps), the continuous use of sedating doses of medication to intentionally reduce consciousness and relieve refractory symptoms at end of life, is ethically acceptable if administered according to standards of best practice. Procedural guidelines outlining the appropriate use of ps and the need for rigorous documentation have been developed. As a quality improvement strategy, we audited the practice and documentation of ps on our palliative care unit (pcu). Methods A pharmacy database search of admissions in 2008 identified, for a subsequent chart review, patients who had received either a continuous infusion of midazolam (≥10 mg/24 h), regular parenteral dosing of methotrimeprazine (≥75 mg daily), or regular phenobarbital. Documentation of the decision-making process, consent, and medication use was collected using a data extraction form based on current international ps standards. Results Interpretation and comparison of data were difficult because of an apparent lack of a consistent operational definition of ps. Patient records had no specific documentation in relation to ps initiation, to clearly identified refractory symptoms, and to informed consent in 60 (64.5%), 43 (46.2%), and 38 (40.9%) charts respectively. Variation in the medications used was marked: 54 patients (58%) were started on a single agent and 39 (42%), on multiple agents. The 40 patients (43%) started on midazolam alone received a mean daily dose of 21.4 mg (standard deviation: 24.6 mg). Conclusions The lack of documentation and standardized practice of ps on our pcu has resulted in a quality improvement program to address those gaps. They also highlight the importance of conducting research and developing clinical guidelines in this area. PMID:24764700

  2. Palliative sedation at home for terminally ill children with cancer.

    Science.gov (United States)

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

    2014-11-01

    The presence of symptoms that are difficult to control always requires adjustment of treatment, and palliative sedation (PS) should be considered. We analyzed our experience in conducting PS at home for terminally ill children with cancer during a seven-year period. We performed a retrospective analysis of medical records of children with cancer treated at home between the years 2005 and 2011. We analyzed the data of 42 cancer patients (18% of all patients); in 21 cases, PS was initiated (solid tumors n = 11, brain tumors [5], bone tumors [4], leukemia [1]). Sedation was introduced because of pain (n = 13), dyspnea (9), anxiety (5), or two of those symptoms (6). The main drug used for sedation was midazolam; all patients received morphine. There were no significant differences in the dose of morphine or midazolam depending on the patient's sex; age was correlated with an increase of midazolam dose (R = 0.68; P = 0.005). Duration of sedation (R = 0.61; P = 0.003) and its later initiation (R = 0.43; P = 0.05) were correlated with an increase of the morphine dose. All patients received adjuvant treatment; in patients who required a morphine dose increase, metoclopramide was used more often (P = 0.0002). Patients did not experience any adverse reactions. Later introduction of sedation was associated with a marginally higher number of intervention visits and a significantly higher number of planned visits (R = 0.53; P = 0.013). Sedation may be safely used at home. It requires close monitoring and full cooperation between the family and hospice team. Because of the limited data on home PS in pediatric populations, further studies are needed. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  3. Palliative Spleen Irradiation: Can we Standardize its Technique?

    International Nuclear Information System (INIS)

    NAZMY, M.S.; RADWAN, A.; MOKHTAR, M.

    2008-01-01

    To explore the pattern of practice of palliative splenic irradiation (PSI) at the National Cancer Institute (NCI), Cairo University. Patients and Methods: The medical records of patients referred for PSI during the time period from 1990 to 2005 were retrospectively reviewed. We compared the three most common planning techniques (two parallel opposing, single direct field, anterior and lateral fields). Results: Eighteen patients who received PSI were identified. Thirteen patients were diagnosed as CML and 5 as CLL. The mean age of the patients was 44 (±16) years and the majority were men (60%). Spleen enlargement was documented in all cases. The single direct anterior field was the most commonly used technique. The dose per fraction ranged from 25 c Gy to 100 c Gy. The total dose ranged from 125 c Gy to 1200 c Gy and the median was 200 c Gy (mean 327 c Gy). There was no significant difference between CML and CLL patients regarding the dose level. Three out of 5 CLL patients and only one out of 13 CML patients received re-irradiation. All patients showed subjective improvement regarding pain and swelling. There was a significant increase in the hemoglobin level and a significant decrease in the WBC count. The single direct field shows variations in the dose from 56 to 102%; however, it is the simplest and the best regarding the dose to the surrounding normal tissues especially the kidney and the liver. Conclusion: PSI has a significant palliative benefit. Although the most widely accepted technique is the 2 parallel opposing anterior-posterior fields, single anterior field is also considered as a suitable option. Higher doses are needed for CLL patients compared to CML patients

  4. The diverse landscape of palliative care clinics.

    Science.gov (United States)

    Smith, Alexander K; Thai, Julie N; Bakitas, Marie A; Meier, Diane E; Spragens, Lynn H; Temel, Jennifer S; Weissman, David E; Rabow, Michael W

    2013-06-01

    Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. Our objective was to obtain in-depth information about palliative care clinics. We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked "pain management" and "determining goals of care" as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). Once established, outpatient palliative care practices anticipate rapid growth. In this context, outpatient practices

  5. Radiotherapy for brain metastases: defining palliative response

    International Nuclear Information System (INIS)

    Bezjak, Andrea; Adam, Janice; Panzarella, Tony; Levin, Wilfred; Barton, Rachael; Kirkbride, Peter; McLean, Michael; Mason, Warren; Wong, Chong Shun; Laperriere, Normand

    2001-01-01

    Background and purpose: Most patients with brain metastases are treated with palliative whole brain radiotherapy (WBRT). There is no established definition of palliative response. The aim of this study was to develop and test clinically useful criteria for response following palliative WBRT. Materials and methods: A prospective study was conducted of patients with symptomatic brain metastases treated with WBRT (20 Gy/5 fractions) and standardised steroid tapering. Assessments included observer rating of neurological symptoms, patient-completed symptom checklist and performance status (PS). Response criteria were operationally defined based on a combination of neurological symptoms, PS and steroid dose. Results: Seventy-five patients were accrued. At 1 month, presenting neurological symptoms were improved in 14 patients, stable in 17, and worse in 21; 23 patients were not assessed, mainly due to death or frailty. Using response criteria defined a priori, 15% (95% CI 7-23%) of patients were classified as having a response to RT, 25% no response, and 29% progression; 27% were deceased at or soon after 1 month. A revised set of criteria was tested, with less emphasis on complete tapering of steroids: they increased the proportion of patients responding to 39% (95% CI 27-50%) but didn't change the large proportion who did not benefit (44%). Conclusions: Clinical response to RT of patients with brain metastases is multifactorial, comprising symptoms, PS and other factors. Assessment of degree of palliation depend on the exact definition used. More research is needed in this important area, to help validate criteria for assessing palliation after WBRT

  6. Home-Based Palliative Care Program Relieves Chronic Pain in Kerala, India: Success Realized Through Patient, Family Narratives.

    Science.gov (United States)

    Ajjarapu, Aparna Sai; Broderick, Ann

    2018-06-14

    An estimated 1.5 billion people across the globe live with chronic pain, and an estimated 61 million people worldwide experience unrelieved serious health-related suffering. One-sixth of the global population lives in India, where approximately 10 million people endure unrelieved serious health-related suffering. The state of Kerala is home to Pallium India, one of the most sophisticated palliative care programs in the country. This private organization in Trivandrum provides palliative and hospice care to underresourced populations and emphasizes holistic pain treatment. The current project features the pain stories of six patients who received treatment from Pallium India. Basic patient demographic information was collected, and a Pallium India staff member who was fluent in Malayalam and English asked questions about each patient's pain experience. Pain narratives illustrate the substantial impact of Pallium India's home visit program and the role of total pain assessment in delivering high-quality palliative care.

  7. Palliative self-expandable metal stents for acute malignant colorectal obstruction: clinical outcomes and risk factors for complications.

    Science.gov (United States)

    Han, Jae Pil; Hong, Su Jin; Kim, Shin Hee; Choi, Jong Hyo; Jung, Hee Jae; Cho, Youn Hee; Ko, Bong Min; Lee, Moon Sung

    2014-08-01

    Self-expandable metal stents (SEMSs) have been used as palliative treatment or bridge to surgery for obstructions caused by colorectal cancer (CRC). We assessed the long-term outcomes of palliative SEMSs and evaluated the risk factors influencing complications. One hundred and seventy-five patients underwent SEMS placement for acute malignant colorectal obstruction. Of the 72 patients who underwent palliative treatment for primary CRC, 30 patients received chemotherapy (CT) for primary cancer (CT group) and 42 underwent best supportive treatment (BST) without CT (BST group). There was a significant difference in late migration between the CT group and the BST group (20.0% in CT group, 2.4% in BST group, p = 0.018). Response to CT influenced the rate of late obstruction (0% in disease control, 35.7% in disease progression, p = 0.014). However, late obstruction was not associated with stent properties, such as diameter or type (≤22 mm vs. >22 mm, 13.5% vs. 14.3%, p = 1.00; uncovered stent vs. covered stent, 15.5% vs. 7.1%, p = 0.675) and migration (≤22 mm vs. >22 mm, 16.2% vs. 2.9%, p = 0.108; uncovered stent vs. covered stent, 8.6% vs. 14.3%, p = 0.615) in palliative SEMS. The administration of CT increases the rate of stent migration, and disease control by CT can reduce the risk of obstruction by maintaining the luminal patency of palliative SEMSs.

  8. Peripheral hepatojejunostomy as palliative treatment for irresectable malignant tumors of the liver hilum.

    Science.gov (United States)

    Schlitt, H J; Weimann, A; Klempnauer, J; Oldhafer, K J; Nashan, B; Raab, R; Pichlmayr, R

    1999-02-01

    To evaluate the concept of surgical decompression of the biliary tree by peripheral hepatojejunostomy for palliative treatment of jaundice in patients with irresectable malignant tumors of the liver hilum. Jaundice, pruritus, and recurrent cholangitis are major clinical complications in patients with obstructive cholestasis resulting from malignant tumors of the liver hilum. Methods for palliative treatment include endoscopic stenting, percutaneous transhepatic drainage, and surgical decompression. The palliative treatment of choice should be safe, effective, and comfortable for the patient. In a retrospective study, surgical technique, perioperative complications, and efficacy of treatment were analyzed for 56 patients who had received a peripheral hepatojejunostomy between 1982 and 1997. Laparotomy in all of these patients had been performed as an attempt for curative resection. Hepatojejunostomy was exclusively palliative in 50 patients and was used for bridging to resection or transplantation in 7. Anastomosis was bilateral in 36 patients and unilateral in 20. The 1-month mortality in the study group was 9%; median survival was 6 months. In patients surviving >1 month, a marked and persistent decrease in cholestasis was achieved in 87%, although complete return to normal was rare. Among the patients with a marked decrease in cholestasis, 72% had no or only mild clinical symptoms such as fever or jaundice. Peripheral hepatojejunostomy is a feasible and reasonably effective palliative treatment for patients with irresectable tumors of the liver hilum. In patients undergoing exploratory laparotomy for attempted curative resection, this procedure frequently leads to persistent-although rarely complete-decompression of the biliary tree. In a few cases it may also be used for bridging to transplantation or liver resection after relief of cholestasis.

  9. Lifestyle changes in cancer patients undergoing curative or palliative chemotherapy: is it feasible?

    Science.gov (United States)

    Vassbakk-Brovold, Karianne; Berntsen, Sveinung; Fegran, Liv; Lian, Henrik; Mjåland, Odd; Mjåland, Svein; Nordin, Karin; Seiler, Stephen; Kersten, Christian

    2017-12-14

    This study aimed to explore the feasibility of an individualized comprehensive lifestyle intervention in cancer patients undergoing curative or palliative chemotherapy. At one cancer center, serving a population of 180,000, 100 consecutive of 161 eligible newly diagnosed cancer patients starting curative or palliative chemotherapy entered a 12-month comprehensive, individualized lifestyle intervention. Participants received a grouped startup course and monthly counseling, based on self-reported and electronically evaluated lifestyle behaviors. Patients with completed baseline and end of study measurements are included in the final analyses. Patients who did not complete end of study measurements are defined as dropouts. More completers (n = 61) vs. dropouts (n = 39) were married or living together (87 vs. 69%, p = .031), and significantly higher baseline physical activity levels (960 vs. 489 min . wk -1 , p = .010), more healthy dietary choices (14 vs 11 points, p = .038) and fewer smokers (8 vs. 23%, p = .036) were observed among completers vs. dropouts. Logistic regression revealed younger (odds ratios (OR): 0.95, 95% confidence interval (CI): 0.91, 0.99) and more patients diagnosed with breast cancer vs. more severe cancer types (OR: 0.16, 95% CI: 0.04, 0.56) among completers vs. dropouts. Improvements were observed in completers healthy (37%, p < 0.001) and unhealthy dietary habits (23%, p = .002), and distress (94%, p < .001). No significant reductions were observed in physical activity levels. Patients treated with palliative intent did not reduce their physical activity levels while healthy dietary habits (38%, p = 0.021) and distress (104%, p = 0.012) was improved. Favorable and possibly clinical relevant lifestyle changes were observed in cancer patients undergoing curative or palliative chemotherapy after a 12-month comprehensive and individualized lifestyle intervention. Palliative patients were able to

  10. Understanding parental behavior in pediatric palliative care: Attachment theory as a paradigm.

    Science.gov (United States)

    Kearney, Joan A; Byrne, Mary W

    2015-12-01

    The objective of this conceptual paper was to present important constructs in attachment theory as they apply to parent and caregiver behavior in pediatric palliative care. Clarification of these constructs is provided with specific reference to their clinical application as well as their reflection in current empirical literature. Social attachment theory is proposed as a developmentally contextual model for the study of parenting in pediatric palliative and end-of-life care. A comprehensive search was conducted of pertinent literatures. These included classic as well as recent theory and research in attachment theory in addition to the empirical literatures on parent and family experience in pediatric palliative care, serious illness, and beyond to parental bereavement. Other relevant literature was examined with respect to the phenomena of concern. The empirical literature in pediatric palliative care supports the use of central concepts in attachment theory as foundational for further inquiry. This is evidenced in the emphasis on the importance of parental protection of the child, as well as executive activities such as decision making and other prominent parental operations, parental psychological resolution of the child's diagnosis and illness as well as coping and meaning making, and the core significance of parental relationships with providers who provide secure-base and safe-haven functions. The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to children and families receiving pediatric palliative care services. Focusing on key parental behaviors and processes within the context of a well-studied and contextually appropriate model will inform this task efficiently. The attachment paradigm meets these criteria and has promise in allowing us to move forward in developing well-defined, inclusive, and conceptually grounded protocols for child and family psychosocial research

  11. [Satisfaction of principal caregivers of patients followed-up by palliative care teams].

    Science.gov (United States)

    Fernández-Isla, L E; Conde-Valvis-Fraga, S; Fernández-Ruíz, J S

    2016-10-01

    To determine the satisfaction of main caregivers of deceased patients followed-up by palliative care teams. Web research on electronic data bases: PubMed and MEDES, using "Palliative Care" and "Patient Satisfaction" as main descriptors, and "Family", "Professional-Family Relations", "Quality of Health Care" and "Quality Assurance, Health Care" as secondary descriptors. Studies written in Spanish and English were included. Profile of principal caregiver: a woman between her mid-forties and her mid-fifties, usually related with the patient as a daughter, and of primary educational level. The items that the main caregivers valued the most were: a kind manner, feeling free to ask questions about problems during the process, tactful explanations, receiving information, pain management, time for answering questions, interest for emotional problems, and information about treatment. The worse valued items were: symptoms control, lack of psychological support after death, preparation for a death of a relative, keeping in touch after death, help to resolve outstanding issues, and help during grief. In general, a great majority of palliative care teams achieved excellent results. In spite of the good results obtained in satisfaction surveys from caregivers with regard to palliative care teams, it is essential to improve the quality of scientific-technical training (both from the medical and the psychological point of view), as well as to improve communicational skills among palliative care staff. Copyright © 2016 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.

  12. The role of palliative radiation therapy in symptomatic locally advanced gastric cancer

    International Nuclear Information System (INIS)

    Tey, Jeremy; Back, Michael F.; Shakespeare, Thomas P.; Mukherjee, Rahul K.; Lu, Jiade J.; Lee, Khai Mun; Wong, Lea Choung; Leong, Cheng Nang; Zhu Ming

    2007-01-01

    Purpose: To review the outcome of palliative radiotherapy (RT) alone in patients with symptomatic locally advanced or recurrent gastric cancer. Methods and Materials: Patients with symptomatic locally advanced or recurrent gastric cancer who were managed palliatively with RT at Cancer Institute, Singapore were retrospectively reviewed. Study end points included symptom response, median survival, and treatment toxicity (retrospectively scored using the Common Toxicity Criteria v3.0 [CTC]). Results: Between November 1999 and December 2004, 33 patients with locally advanced or recurrent gastric cancer were managed with palliative intent using RT alone. Median age was 76 years (range, 38-90 years). Twenty-one (64%) patients had known distant metastatic disease at time of treatment. Key index symptoms were bleeding (24 patients), obstruction (8 patients), and pain (8 patients). The majority of patients received 30 Gy/10 fractions (17 patients). Dose fractionation regimen ranged from an 8-Gy single fraction to 40 Gy in 16 fractions. Median survival was 145 days, actuarial 12-month survival 8%. A total of 54.3% of patients (13/24) with bleeding responded (median duration of response of 140 days), 25% of patients (2/8) with obstruction responded (median duration of response of 102 days), and 25% of patients (2/8) with pain responded (median duration of response of 105 days). No obvious dose-response was evident. One Grade 3 CTC equivalent toxicity was recorded. Conclusion: External beam RT alone is an effective and well tolerated modality in the local palliation of gastric cancer, with palliation lasting the majority of patients' lives

  13. Palliative Care Physicians' Attitudes Toward Patient Autonomy and a Good Death in East Asian Countries.

    Science.gov (United States)

    Morita, Tatsuya; Oyama, Yasuhiro; Cheng, Shao-Yi; Suh, Sang-Yeon; Koh, Su Jin; Kim, Hyun Sook; Chiu, Tai-Yuan; Hwang, Shinn-Jang; Shirado, Akemi; Tsuneto, Satoru

    2015-08-01

    Clarification of the potential differences in end-of-life care among East Asian countries is necessary to provide palliative care that is individualized for each patient. The aim was to explore the differences in attitude toward patient autonomy and a good death among East Asian palliative care physicians. A cross-sectional survey was performed involving palliative care physicians in Japan, Taiwan, and Korea. Physicians' attitudes toward patient autonomy and physician-perceived good death were assessed. A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; whereas 7.4% of Japanese physicians agreed. Physicians' attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important. There are considerable intercountry differences in physicians' attitudes toward autonomy and physician-perceived good death. East Asia is not culturally the same; thus, palliative care should be provided in a culturally acceptable manner for each country

  14. Palliative Sedation: An Analysis of International Guidelines and Position Statements.

    Science.gov (United States)

    Gurschick, Lauren; Mayer, Deborah K; Hanson, Laura C

    2015-09-01

    To describe the suggested clinical practice of palliative sedation as it is presented in the literature and discuss available guidelines for its use. CINAHL, PubMed, and Web of Science were searched for publications since 1997 for recommended guidelines and position statements on palliative sedation as well as data on its provision. Keywords included palliative sedation, terminal sedation, guidelines, United States, and end of life. Inclusion criteria were palliative sedation policies, frameworks, guidelines, or discussion of its practice, general or oncology patient population, performance of the intervention in an inpatient unit, for humans, and in English. Exclusion criteria were palliative sedation in children, acute illness, procedural, or burns, and predominantly ethical discussions. Guidelines were published by American College of Physicians-American Society of Internal Medicine (2000), Hospice and Palliative Nurses Association (2003), American Academy of Hospice and Palliative Medicine (2006), American Medical Association (2008), Royal Dutch Medical Association (2009), European Association for Palliative Care (2009), National Hospice and Palliative Care Organization (2010), and National Comprehensive Cancer Network (2012). Variances throughout guidelines include definitions of the practice, indications for its use, continuation of life-prolonging therapies, medications used, and timing/prognosis. The development and implementation of institutional-based guidelines with clear stance on the discussed variances is necessary for consistency in practice. Data on provision of palliative sedation after implementation of guidelines needs to be collected and disseminated for a better understanding of the current practice in the United States. © The Author(s) 2014.

  15. Palliative nursing care for children and adolescents with cancer

    Directory of Open Access Journals (Sweden)

    Gilmer MJ

    2012-06-01

    Full Text Available Terrah L Foster,1,2 Cynthia J Bell,1 Carey F McDonald,2 Joy S Harris,3 Mary Jo Gilmer,1,21Vanderbilt University School of Nursing, Nashville, 2Monroe Carell Jr Children's Hospital at Vanderbilt, Nashville, 3Vanderbilt University, Nashville, TN, USAAbstract: Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediatric oncology populations. This paper describes pediatric palliative care and provides an overview of literature related to the physical, psychological, social, and spiritual domains of palliative nursing care for children and adolescents with cancer. Nurses can provide optimal palliative care by accounting for children's understanding of death, encouraging early initiation of palliative care services, and improving utilization of pediatric palliative care in cancer settings. Specific roles of registered nurses and advanced practice nurses in pediatric palliative care will be addressed. Recommendations for future research are made to further advance the science of pediatric palliative care and decrease suffering for children and teens with cancer.Keywords: pediatric palliative care, pediatric cancer, oncology, child, suffering

  16. The relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality.

    Science.gov (United States)

    Sandsdalen, Tuva; Høye, Sevald; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Wilde-Larsson, Bodil

    2017-12-06

    Little is known about the combination of person- and organization- related conditions and the relationships with patients' perspectives of care quality. Such a combination could contribute knowledge reflecting the complexity of clinical practice, and enhance individualized care. The aim was to investigate the relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality. A cross-sectional study, including 191 patients in the late palliative phase (73% response rate) admitted to hospice inpatient care (n = 72), hospice day care (n = 51), palliative units in nursing homes (n = 30) and home care (n = 38), was conducted between November 2013 and December 2014, using the instrument Quality from the Patients' Perspective specific to palliative care (QPP-PC). Data were analysed, using analysis of covariance, to explore the amount of the variance in the dependent variables (QPP-PC) that could be explained by combination of the independent variables - Person- and organization-related conditions, - while controlling for differences in covariates. Patients scored the care received and the subjective importance as moderate to high. The combination of person- and organization - related conditions revealed that patients with a high sense of coherence, lower age (person - related conditions) and being in a ward with access to and availability of physicians (organization-related condition) might be associated with significantly higher scores for the quality of care received. Gender (women), daily contact with family and friends, and low health-related quality of life (person-related conditions) might be associated with higher scores for subjective importance of the aspects of care quality. Healthcare personnel, leaders and policy makers need to pay attention to person- and organization-related conditions in order to provide person-centered palliative care of high quality. Further studies from

  17. Vortex Flow in the Right Atrium Surrogates Supraventricular Arrhythmia and Thrombus After Atriopulmonary Connection-Type Fontan Operation: Vortex Flow Analysis Using Conventional Cine Magnetic Resonance Imaging.

    Science.gov (United States)

    Shiina, Yumi; Inai, Kei; Takahashi, Tatsunori; Shimomiya, Yamato; Ishizaki, Umiko; Fukushima, Kenji; Nagao, Michinobu

    2018-02-01

    We developed a novel imaging technique, designated as vortex flow (VF) mapping, which presents a vortex flow visually on conventional two-dimensional (2D) cine MRI. Using it, we assessed circumferential VF patterns and influences on RA thrombus and supraventricular tachycardia (SVT) in AP connection-type Fontan circulation. Retrospectively, we enrolled 27 consecutive patients (25.1 ± 9.2 years) and 7 age-matched controls who underwent cardiac MRI. Conventional cine images acquired using a 1.5-Tesla scanner were scanned for axial and coronal cross section of the RA. We developed "vortex flow mapping" to demonstrate the ratio of the circumferential voxel movement at each phase to the total movement throughout a cardiac cycle towards the RA center. The maximum ratio was used as a magnitude of vortex flow (MVF%) in RA cine imaging. We also measured percentages of strong and weak VF areas (VFA%). Furthermore, in 10 out of 27, we compared VF between previous CMR (3.8 ± 1.5 years ago) and latest CMR. Of the patients, 15 had cardiovascular complications (Group A); 12 did not (Group B). A transaxial image showed that strong VFA% in Group A was significantly smaller than that in Group B or controls. A coronal view revealed that strong VFA% was also smaller, and weak VFA% was larger in Group A than in Group B or controls (P < 0.05, and P < 0.05). Maximum MVF% in Group A was significantly smaller than in other groups (P < 0.001). Univariate logistic analyses revealed weak VFA% on a coronal image, and serum total bilirubin level as factors affecting cardiovascular complications (Odds ratio 1.14 and 66.1, 95% CI 1.004-1.30 and 1.59-2755.6, P values < 0.05 and < 0.05, respectively). Compared to the previous CMR, smaller maximum VMF%, smaller strong VFA%, and larger weak VFA% were identified in the latest CMR. Circumferentially weak VFA% on a coronal image can be one surrogate marker of SVT and thrombus in AP connection-type Fontan circulation. This simple VF

  18. Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations.

    Science.gov (United States)

    Weissman, David E; Morrison, R Sean; Meier, Diane E

    2010-02-01

    Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.

  19. Community Palliative Care Nurses' Challenges and Coping Strategies on Delivering Home-Based Pediatric Palliative Care.

    Science.gov (United States)

    Chong, LeeAi; Abdullah, Adina

    2017-03-01

    The aim of this study was to explore the experience of community palliative care nurses providing home care to children. A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports. These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.

  20. End-of-life palliative chemotherapy: Where do we stand?

    International Nuclear Information System (INIS)

    Mohammed, A.A.; Al-Zahrani, A.S.; Ghanem, H.M.; El Saify, A.M.; EL-Khatib, H.M.; Mohammed, A.A.; Farooq, M.U.

    2015-01-01

    Background: This study evaluates the use of palliative chemotherapy (PCT) and possible associated factors at the end of life. Method: The study includes all advanced non hematological cancer patients who died in the King Abdullah Medical City during the period from January 2011 to April 2014. Demographic and disease features were registered. Results: 420 patients were included in the study, median age 62 years (range 17-108); 52% female and 48% male. 87.4% of patients were Saudis and 12.6% non Saudis. 124 (29.5%) patients received PCT at the last month before death (LM-PCT): 21.8%, 22.6% and 55.6% within one, two and four weeks of death, respectively. Place of death (critical care vs. regular ward) and mode of admission (ER vs. OPD vs. Transferred) had a strong association with LM-PCT (p< 0.0001, / = 0.35) and (p< 0.0001, V = 0.43), respectively. There was a gradual increase in the number of patients receiving LM-PCT from January 2011 to April 2014; 15.3%, 28.2%, 37.1% and 19.4%, respectively. Conclusion: In our center; at the end of life, there is a gradual increase in the number of patients receiving chemotherapy which significantly increased cancer patients’ odds without clear predictive factors associated with its use, which calls into question the benefits of PCT in terminally ill cancer patients.

  1. Palliative care in India: Current progress and future needs

    Directory of Open Access Journals (Sweden)

    Divya Khosla

    2012-01-01

    Full Text Available Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities.

  2. Pediatric Palliative Care Resources for You | NIH MedlinePlus the Magazine

    Science.gov (United States)

    ... Pediatric Palliative Care Resources for You Follow us Pediatric Palliative Care Resources for You Dealing with a ... The National Institute of Nursing Research (NINR) offers pediatric palliative care resources to help you, your family, ...

  3. Patient-reported symptoms during radiotherapy : Clinically relevant symptom burden in patients treated with palliative and curative intent.

    Science.gov (United States)

    Körner, Philipp; Ehrmann, Katja; Hartmannsgruber, Johann; Metz, Michaela; Steigerwald, Sabrina; Flentje, Michael; van Oorschot, Birgitt

    2017-07-01

    The benefits of patient-reported symptom assessment combined with integrated palliative care are well documented. This study assessed the symptom burden of palliative and curative-intent radiation oncology patients. Prior to first consultation and at the end of RT, all adult cancer patients planned to receive fractionated percutaneous radiotherapy (RT) were asked to answer the Edmonton Symptom Assessment Scale (ESAS; nine symptoms from 0 = no symptoms to 10 = worst possible symptoms). Mean values were used for curative vs. palliative and pre-post comparisons, and the clinical relevance was evaluated (symptom values ≥ 4). Of 163 participating patients, 151 patients (90.9%) completed both surveys (116 curative and 35 palliative patients). Before beginning RT, 88.6% of palliative and 72.3% of curative patients showed at least one clinically relevant symptom. Curative patients most frequently named decreased general wellbeing (38.6%), followed by tiredness (35.0%), anxiety (32.4%), depression (30.0%), pain (26.3%), lack of appetite (23.5%), dyspnea (17.8%), drowsiness (8.0%) and nausea (6.1%). Palliative patients most frequently named decreased general wellbeing (62.8%), followed by pain (62.8%), tiredness (60.0%), lack of appetite (40.0%), anxiety (38.0%), depression (33.3%), dyspnea (28.5%), drowsiness (25.7%) and nausea (14.2%). At the end of RT, the proportion of curative and palliative patients with a clinically relevant symptom had increased significantly to 79.8 and 91.4%, respectively; whereas the proportion of patients reporting clinically relevant pain had decreased significantly (42.8 vs. 62.8%, respectively). Palliative patients had significantly increased tiredness. Curative patients reported significant increases in pain, tiredness, nausea, drowsiness, lack of appetite and restrictions in general wellbeing. Assessment of patient-reported symptoms was successfully realized in radiation oncology routine. Overall, both groups showed a high symptom

  4. Patient-reported symptoms during radiotherapy. Clinically relevant symptom burden in patients treated with palliative and curative intent

    International Nuclear Information System (INIS)

    Koerner, Philipp; Ehrmann, Katja; Hartmannsgruber, Johann; Metz, Michaela; Steigerwald, Sabrina; Flentje, Michael; Oorschot, Birgitt van

    2017-01-01

    The benefits of patient-reported symptom assessment combined with integrated palliative care are well documented. This study assessed the symptom burden of palliative and curative-intent radiation oncology patients. Prior to first consultation and at the end of RT, all adult cancer patients planned to receive fractionated percutaneous radiotherapy (RT) were asked to answer the Edmonton Symptom Assessment Scale (ESAS; nine symptoms from 0 = no symptoms to 10 = worst possible symptoms). Mean values were used for curative vs. palliative and pre-post comparisons, and the clinical relevance was evaluated (symptom values ≥ 4). Of 163 participating patients, 151 patients (90.9%) completed both surveys (116 curative and 35 palliative patients). Before beginning RT, 88.6% of palliative and 72.3% of curative patients showed at least one clinically relevant symptom. Curative patients most frequently named decreased general wellbeing (38.6%), followed by tiredness (35.0%), anxiety (32.4%), depression (30.0%), pain (26.3%), lack of appetite (23.5%), dyspnea (17.8%), drowsiness (8.0%) and nausea (6.1%). Palliative patients most frequently named decreased general wellbeing (62.8%), followed by pain (62.8%), tiredness (60.0%), lack of appetite (40.0%), anxiety (38.0%), depression (33.3%), dyspnea (28.5%), drowsiness (25.7%) and nausea (14.2%). At the end of RT, the proportion of curative and palliative patients with a clinically relevant symptom had increased significantly to 79.8 and 91.4%, respectively; whereas the proportion of patients reporting clinically relevant pain had decreased significantly (42.8 vs. 62.8%, respectively). Palliative patients had significantly increased tiredness. Curative patients reported significant increases in pain, tiredness, nausea, drowsiness, lack of appetite and restrictions in general wellbeing. Assessment of patient-reported symptoms was successfully realized in radiation oncology routine. Overall, both groups showed a high symptom burden

  5. Music therapy in palliative care: current perspectives.

    Science.gov (United States)

    O'Kelly, Julian

    2002-03-01

    As the music therapy profession has developed internationally over the last 25 years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, song-writing and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.

  6. Faith healing and the palliative care team.

    Science.gov (United States)

    Hess, Denise

    2013-01-01

    As the spiritual care needs of patients and their loved ones have become an essential component of palliative care, clinicians are being challenged to develop new ways of addressing the spiritual issues that often arise in the palliative care setting. Recent research has given attention to the communication strategies that are effective with patients or their loved ones who report that they are seeking a miraculous physical healing. However, these strategies often assume a unilateral rather than collaborative view of divine intervention. Communication strategies that are effective with unilateral understandings of divine intervention may be contraindicated with those who hold to a collaborative view of divine intervention. Greater attention to language of human-divine interaction along with approaching faith healing as a third modality of treatment are explored as additional interventions.

  7. Palliative care and end-of-life care for polypathological patients.

    Science.gov (United States)

    Martinez-Litago, E; Martínez-Velasco, M C; Muniesa-Zaragozano, M P

    2017-12-01

    Patients with advanced chronic diseases receive fragmented care, which entails high resource consumption and a poor quality of life. Uncertainty in the prognosis and scarce investigation into the importance of symptomatic control in this patient group hinders a proper therapeutic approach. Palliative care teams optimise the use of resources through comprehensive patient care, the optimization of the patient's environment, communication, the preparation of early care plans and the creation of coordinated healthcare circuits, which improve the quality of the patient's care in advanced stages of the disease. In the end-of-life phase, the therapeutic approach is focused on symptomatic control, selecting treatments according to the cause, comorbidities and the patient's wishes. To control refractory symptoms, palliative sedation is considered an indispensable option. Copyright © 2017 Elsevier España, S.L.U. and Sociedad Española de Medicina Interna (SEMI). All rights reserved.

  8. Attitude to Euthanasia of Workers in Palliative Care

    OpenAIRE

    Poštová, Lenka

    2015-01-01

    This bsachelor thesis is devided into two parts, theoretical and practical. The work focuses on opinions of workers in palliative care on euthanasia. The theoretical part deals with the definition of palliative care, its goals and principles. Futhermore, it also introduced quality of palliative care in Czech Republic. Second chapter explains the term euthanasia and its forms. It also contains opinions of citizens of the Czech Republic on euthanasia. Third chapter is dedicated to terms such as...

  9. Factors affecting rural volunteering in palliative care - an integrated review.

    Science.gov (United States)

    Whittall, Dawn; Lee, Susan; O'Connor, Margaret

    2016-12-01

    To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment

  10. Internship report on palliative care at St Catherine's hospice

    OpenAIRE

    Monteiro, Andreia Marlene da Silva

    2016-01-01

    This report, performed in the context of the completion of the masters in Palliative Care, presents the activities and learning experiences that I have acquired during the months of training in the different settings of palliative care. This internship was performed at St Catherine’s Hospice (Inpatient unit, Day hospice and Community team) and with the National Health Service of East Surrey Hospital Specialist Palliative Care Team. Alongside the institutional involvement, internship activitie...

  11. Music therapy perspectives in palliative care education.

    Science.gov (United States)

    Porchet-Munro, S

    1993-01-01

    Major strides have been made in expanding the content of professional education in palliative care to include a focus on attitudes which nurture compassionate care as well as on knowledge and skills. However, accessing the emotional spheres--for instance the fear and helplessness of caregivers--remains a challenge. The inclusion of music therapy techniques as a teaching modality, with an emphasis on emotional experience and nonverbal expression, is suggested to address the latter and to enhance affective growth and learning.

  12. Palliative care in Africa: a global challenge

    OpenAIRE

    Ntizimira, Christian R; Nkurikiyimfura, Jean Luc; Mukeshimana, Olive; Ngizwenayo, Scholastique; Mukasahaha, Diane; Clancy, Clare

    2014-01-01

    We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said ?in the middle of difficulty lies opportunity? and this sentiment coul...

  13. Using Skype to support palliative care surveillance.

    Science.gov (United States)

    Jones, Jacqueline

    2014-02-01

    The aim of this article is to demonstrate how a novel yet important tool can facilitate family involvement in person-centred care, despite geographical distance. The author presents a case study as an in-depth example of the use of Skype in the context of palliative care at home. Skype enhanced family surveillance and symptom management, augmented shared decision making, provided a space for virtual bedside vigil, and ultimately provided the rapport necessary for optimal end of life care.

  14. Electronic warfare receivers and receiving systems

    CERN Document Server

    Poisel, Richard A

    2014-01-01

    Receivers systems are considered the core of electronic warfare (EW) intercept systems. Without them, the fundamental purpose of such systems is null and void. This book considers the major elements that make up receiver systems and the receivers that go in them.This resource provides system design engineers with techniques for design and development of EW receivers for modern modulations (spread spectrum) in addition to receivers for older, common modulation formats. Each major module in these receivers is considered in detail. Design information is included as well as performance tradeoffs o

  15. Radiotherapy of the neuroaxis for palliative treatment of leptomeningeal carcinomatosis

    International Nuclear Information System (INIS)

    Hermann, B.; Hueltenschmidt, B.; Sautter-Bihl, M.L.

    2001-01-01

    Background: Leptomeningeal carcinomatosis occurs in about 5% of solid tumors and may seriously compromise quality of life. Aim of the present study was to evaluate the feasibility of craniospinal irradiation with and without intrathecal chemotherapy and its efficacy with regard to symptom palliation and survival. Patients and Methods: 16 patients (mean age 46 years; nine breast cancers, five lung cancers, one renal cell cancer, one tumor of unknown primary site) with leptomeningeal carcinomatosis occurring after a median interval from primary tumor diagnosis of 5 months (0-300 months) received craniospinal irradiation between October 1995 and May 2000. The median total dose was 36 Gy (a 1.6-2.0 Gy). Ten patients were additionally treated with intrathecal methotrexate (15 mg per cycle, 2-8 cycles). Results: Median survival was 12 weeks, 8 weeks after radiotherapy alone, 16 weeks after combined modality treatment. 14 patients died from disease. Eleven patients (68%) experienced regression of their neurological symptoms during or soon after completion of radiotherapy. Seven patients regained their ability to walk, six had pain reduction, three regression of bladder and bowel incontinence. In three patients symptom progression and in two patients no change occurred. Side effects were: Myelosuppression (CTC) Grade I: n=2, Grade II: n=4, Grade III: n=4 patients and Grade IV: n=1. Nine patients had dysphagia, seven mucositis, three suffered from nausea. No late toxicity was observed. Conclusion: Craniospinal radiotherapy is feasible and effective for palliative treatment of leptomeningeal carcinomatosis. As far as the small patient number permits any definite conclusions, combined modality treatment seems superior to irradiation alone. (orig.) [de

  16. Palliative care knowledge and attitudes among oncology nurses in Qatar.

    Science.gov (United States)

    Al-Kindi, Sadeer G; Zeinah, Ghaith F Abu; Hassan, Azza Adel

    2014-08-01

    Formal palliative care (PC) education is lacking in the middle eastern state of Qatar. This study was done to assess the need for PC education among oncology nurses in Qatar. In March 2012, a self-constructed questionnaire was distributed to 115 nurses at the Qatar National Center for Cancer Care and Research. A total of 115 nurses responded to the questionnaire. The majority (87.8%) were female. Although 60% had more than 10 years of work experience, only 31% had received formal training in PC, with only 6.1% having completed postgraduate training. The majority (63%) of responders attributed this issue to unavailability of PC courses rather than lack of time, interest, or financial issues. Currently, only 16.7% did not express interest in the field, with 56% showing some kind of interest. In terms of knowledge, 54% of the responders were familiar with the World Health Organization ladder for pain relief. Only 43.6% know about Palliative Performance Scale, and half of the nurses know the Edmonton Symptom Assessment System. Overall, 56% of the nurses indicated a need for training in more than 1 aspect. These aspects included training in care of the dying patients (14.6%), communication strategies (22%), caregiver support (10.6%), psychosocial care (15%), pain management (10.2%), other symptom management (13%), and other ethical/spiritual issues (14.2%). There is a clear deficiency in formal PC education among the nurses at the National Center for Cancer Care and Research, in Qatar. This is reflected by their lack of experience and exposure to PC and their mediocre knowledge in the field. This could be attributed to the fact that formal PC service was established only recently in Qatar (2008). Formal training courses in PC nursing are required. © The Author(s) 2013.

  17. Ethical issues in laryngology: tracheal stenting as palliative care.

    Science.gov (United States)

    Kazi, Aasif A; Flowers, W Jeffrey; Barrett, Jeanna M; O'Rourke, Ashli K; Postma, Gregory N; Weinberger, Paul M

    2014-07-01

    To improve understanding of aspects of end-of-life care that may not be intuitive to the otolaryngology community. A comprehensive review of the literature was performed by searching Medline, Embase, and Google Scholar databases. Primary manuscripts' bibliographies were reviewed to identify any nonindexed references. Prospective consultation by means of one-on-one interviews was sought from nonotolaryngology key stakeholders in the areas of hospice nursing care and patient advocacy in order to identify pertinent issues. We identified over 1,000 articles published from 1965 to 2013 on the topic of tracheal stents, as well as over 40,000 on hospice/end-of-life care. Three articles focusing specifically on palliative care and airway stenting were identified, of which three were case reports and none were definitive reviews. There are a number of significant issues and concepts unique to hospice care. These are likely unfamiliar to all except for head and neck oncology-specialized otolaryngologists. An example is that hospice care focuses on quality of life rather than prolongation of life (such as curative surgery). Patients with nonoperable tracheal obstruction from malignancy face an unpleasant demise from suffocation. For those patients, stenting can relieve suffering by restoring airway patency. Airway stenting can be a valid palliative care option, even for terminal patients receiving hospice care, when performed to relieve airway obstruction and improve quality of life. End-of-life ethics is an underdeveloped area of otolaryngology that should be explored. © 2013 The American Laryngological, Rhinological and Otological Society, Inc.

  18. Multiple myeloma in Niger Delta, Nigeria: complications and the outcome of palliative interventions

    Science.gov (United States)

    Nwabuko, Ogbonna Collins; Igbigbi, Elizabeth Eneikido; Chukwuonye, Innocent Ijezie; Nnoli, Martin Anazodo

    2017-01-01

    Background Multiple myeloma (MM) is one of the hematological malignancies that require palliative care. This is because of the life-threatening nature and the suffering associated with the illness. The aim of this study is to bring to the fore the complications experienced by people living with MM in the Niger-Delta region of Nigeria and the outcome of various palliative interventions. Methods This was a 10-year multi-center retrospective study of 26 patients diagnosed and managed in three major centers in the Niger-Delta region of Nigeria from January 2003 to December 2012. Information on the clinical, laboratory, radiological data, and palliative treatment was obtained at presentation and subsequently at intervals of 3 months until the patient was lost to follow-up. Result The mean duration from onset of symptoms to diagnosis was 13.12 months (95% CI, 6.65–19.58). A total of 16 (61.5%), eight (30.8%), and two subjects (7.7%) presented in Durie–Salmon (DS) stages III, II, and I, respectively. The complications presented by patients at diagnoses included bone pain (84.6%), anemia (61.5%), nephropathy (23.1%), and hemiplegia (35%). All the patients received analgesics, while 50.0% received blood transfusion, 56.7% had surgery performed, 19% had hemodialysis, and 3.8% received radiotherapy. A total of 10 (38%) patients benefited from bisphosphonates (BPs). A total of 57.6% of patients were on melphalan–prednisone (MP) double regimen, while 19% and 8% patients were on MP–thalidomide and MP–bortezomib triple regimens, respectively. A total of 3.8% of patients at DS stage IIIB disease had autologous stem-cell transplantation (ASCT). Only 7.6% of the myeloma patients survived up to 5 years post diagnosis. The overall mean survival interval was 39.7 months (95% CI, 32.1–47.2). Conclusion Late diagnosis and inadequate palliative care account for major complications encountered by MM patients in the Niger-Delta region of Nigeria. This could be responsible for

  19. Providing pediatric palliative care: PACT in action.

    Science.gov (United States)

    Duncan, Janet; Spengler, Emily; Wolfe, Joanne

    2007-01-01

    High-quality pediatric palliative care should be an expected standard in the United States, especially since the publication of the numerous position statements such as "Precepts of Palliative Care for Children and Adolescents and Their Families," a joint statement created by the Association of Pediatric Oncology Nurses, the National Association of Neonatal Nurses, and the Society of Pediatric Nurses. Although many barriers still exist, dedicated individuals and teams strive to promote models of excellence and improve care for children with life-threatening conditions and their families. The Pediatric Advanced Care Team, a joint project of Dana-Farber Cancer Institute and Children's Hospital, Boston, is one such interdisciplinary pediatric palliative care consultation service. Founded in 1997, we have grown and learned from formal study and our extensive clinical work with families, children, and our colleagues. This article describes our journey as an interdisciplinary team forging a new service within two renowned medical institutions in which historically the primary emphasis of care has been on cure and innovation. Although these values remain, our work has resulted in an increased acceptance of balancing treatment of the underlying disease or condition along with treatment of the physical, psychosocial, and spiritual needs of the child and family through life or death. One of our goals is to help promote a balance of hope for cure with hope for comfort, dignity, and integrity for every child and family.

  20. Palliative radiotherapy for symptomatic osseous metastases

    International Nuclear Information System (INIS)

    Shigematsu, Naoyuki; Ito, Hisao; Toya, Kazuhito; Ko, Weijey; Kutsuki, Shouji; Tsukamoto, Nobuhiro; Kubo, Atsushi; Dokiya, Takushi; Yorozu, Atsunori.

    1995-01-01

    Bone matastases are one of the most common and serious conditions requiring radiotherapy, but there is still a considerable lack of agreement on optimal radiation schedule. We analyzed patients with symptomatic osseous matastases from lung (72 patients) and breast (63 patients) carcinoma treated by palliative radiotherapy between 1983 and 1992. In this series, the incidences of symptomatic bone metastases appearing within 2 years after the first diagnosis of the primary lesion were 96% and 36% for lung and breast carcinomas, respectively. Thirty percent of bone metastases from breast carcinoma were diagnosed more than 5 years after the first diagnosis. Thus careful follow-up must be carried out for a prolonged period. Pain relief was achieved at almost the same rate for bone metastases from lung and breast carcinomas (81% and 85%, respectively), an the rapid onset of pain relief (15 Gy or less) was obtained in about half the patients for both diseases. The rapid onset of pain relief and the lack of association between the onset of pain relief and primary tumor argued against the conventional theory that tumor shrinkage is a component of the initial response. In contrast to the fact that almost all lung carcinoma patients had very poor prognoses, one third of the breast carcinoma patients were alive more than 2 years after palliative radiotherapy. Thust, the late effects of radiation, such as radiation myelopathy, must be always considered especially in breast carcinoma patients even when it is 'just' palliative radiotherapy for bone metastases. (author)

  1. Euthanasia and palliative sedation in Belgium.

    Science.gov (United States)

    Cohen-Almagor, Raphael; Ely, E Wesley

    2018-01-04

    The aim of this article is to use data from Belgium to analyse distinctions between palliative sedation and euthanasia. There is a need to reduce confusion and improve communication related to patient management at the end of life specifically regarding the rapidly expanding area of patient care that incorporates a spectrum of nuanced yet overlapping terms such as palliative care, sedation, palliative sedation, continued sedation, continued sedation until death, terminal sedation, voluntary euthanasia and involuntary euthanasia. Some physicians and nurses mistakenly think that relieving suffering at the end of life by heavily sedating patients is a form of euthanasia, when indeed it is merely responding to the ordinary and proportionate needs of the patient. Concerns are raised about abuse in the form of deliberate involuntary euthanasia, obfuscation and disregard for the processes sustaining the management of refractory suffering at the end of life. Some suggestions designed to improve patient management and prevent potential abuse are offered. © 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. Palliative care and pediatric surgical oncology.

    Science.gov (United States)

    Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro

    2016-10-01

    Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort. Copyright © 2016 Elsevier Inc. All rights reserved.

  3. Spirituality and distress in palliative care consultation.

    Science.gov (United States)

    Hills, Judith; Paice, Judith A; Cameron, Jacqueline R; Shott, Susan

    2005-08-01

    One's spirituality or religious beliefs and practices may have a profound impact on how the individual copes with the suffering that so often accompanies advanced disease. Several previous studies suggest that negative religious coping can significantly affect health outcomes. The primary aim of this study was to explore the relationship between spirituality, religious coping, and symptoms of distress among a group of inpatients referred to the palliative care consult service. Pilot study. The study was conducted in a large academic medical center with a comprehensive Palliative Care and Home Hospice Program. (1) National Comprehensive Cancer Network Distress Management Assessment Tool; (2) Pargament Brief Religious Coping Scale (Brief RCOPE); (3) Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp); (4) Puchalski's FICA; and (5) Profile of Mood States-Short Form (POMS-SF). The 31 subjects surveyed experienced moderate distress (5.8 +/- 2.7), major physical and psychosocial symptom burden, along with reduced function and significant caregiving needs. The majority (87.2%) perceived themselves to be at least somewhat spiritual, with 77.4% admitting to being at least somewhat religious. Negative religious coping (i.e., statements regarding punishment or abandonment by God) was positively associated with distress, confusion, depression, and negatively associated with physical and emotional well-being, as well as quality of life. Palliative care clinicians should be alert to symptoms of spiritual distress and intervene accordingly. Future research is needed to identify optimal techniques to address negative religious coping.

  4. Palliative care and neurology: time for a paradigm shift.

    Science.gov (United States)

    Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

    2014-08-05

    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. © 2014 American Academy of Neurology.

  5. Suboptimal palliative sedation in primary care: an exploration.

    Science.gov (United States)

    Pype, Peter; Teuwen, Inge; Mertens, Fien; Sercu, Marij; De Sutter, An

    2018-02-01

    Palliative sedation is a therapeutic option to control refractory symptoms in terminal palliative patients. This study aims at describing the occurrence and characteristics of suboptimal palliative sedations in primary care and at exploring the way general practitioners (GPs) experience suboptimal palliative sedation in their practice. We conducted a mixed methods study with a quantitative prospective survey in primary care and qualitative semi-structured interviews with GPs. The research team defined suboptimal palliative sedation as a time interval until deep sleep >1.5 h and/ or >2 awakenings after the start of the unconsciousness. Descriptive statistics were calculated on the quantitative data. Thematic analysis was used to analyse interview transcripts. We registered 63 palliative sedations in 1181 home deaths, 27 forms were completed. Eleven palliative sedations were suboptimal: eight due to the long time span until deep sleep; three due the number of unintended awakenings. GPs' interview analysis revealed two major themes: the shifting perception of failure and the burden of responsibility. Suboptimal palliative sedation occurs frequently in primary palliative care. Efficient communication towards family members is needed to prevent them from having unrealistic expectations and to prevent putting pressure on the GP to hasten the procedure. Sharing the burden of decision-making during the procedure with other health care professionals might diminish the heavy responsibility as perceived by GPs.

  6. Palliative sedation in end-of-life care.

    Science.gov (United States)

    Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana

    2013-07-01

    The aim of this review was to present and comment on recent data published on palliative sedation in palliative and end-of-life care. Palliative sedation is a medical procedure used to deal with the refractory symptoms occurring in the advanced stages of cancer. It has clinical, nursing, relational and ethical implications, making it a highly sensitive issue. Over the last 12 months, a number of authors have published interesting new findings on different areas of palliative sedation, that is prevalence, indications, monitoring, duration and choice of drugs. In particular, a clear definition of palliative sedation and of its more pronounced form, deep continuous sedation (DCS), has emerged. It has been confirmed that, when performed in the correct way and with the right aims, palliative sedation does not have a detrimental impact on survival. Recent findings confirm that palliative sedation is an integral part of a medical palliative care approach and is needed in certain clinical situations. It is a legitimate clinical practice from any ethical point of view. While oncologists should have a basic knowledge of the procedure, its in depth study is a core competency for palliative care physicians.

  7. [Providing regular relief; considerations for palliative care in the Netherlands].

    Science.gov (United States)

    Crul, B J; van Weel, C

    2001-10-20

    Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres.

  8. Flemish palliative care nurses' attitudes toward euthanasia: a quantitative study.

    Science.gov (United States)

    Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert

    2009-10-01

    To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.

  9. Determinants of psychology service utilization in a palliative care outpatient population.

    Science.gov (United States)

    Azuero, Casey; Allen, Rebecca Sue; Kvale, Elizabeth; Azuero, Andres; Parmelee, Patricia

    2014-06-01

    Research has demonstrated that treating cancer patients' psychological and physical health leads to improved overall health. This may be especially true for palliative care patients facing serious illness. This study examines the proportion and determinants of psychology service utilization in an outpatient palliative care population. Data from an existing clinical database in an outpatient palliative clinic utilizing a collaborative care model to deliver psychology services were explored. This study was framed by Andersen's Behavioral Model of Health Service Use, which incorporates three main components: predisposing, enabling, and need factors to model health service utilization. The sample (N = 149) was majority middle aged, female, and White with a primary diagnosis of cancer. Cross-tabulations were conducted to determine how many patients who met screening criteria for depression or anxiety sought psychology services. Logistic regression analyses were conducted to assess for predisposing, enabling, and need factor determinants of psychology service utilization. Among patients who met criteria for moderate depression or anxiety, 50% did not access readily available psychology services. Enabling factors were the strongest determinant of psychology utilization. Factors associated with need for psychology services (i.e., emotional distress and psychological symptom burden) did not reach significance in determining psychology service use. This study extends current knowledge about psychology utilization to palliative care outpatients receiving care within a collaborative care model. Directions for future research include further investigation of care models that optimize enabling strategies to enhance access to these services, and examination of patient-reported barriers to receiving this care. Copyright © 2013 John Wiley & Sons, Ltd.

  10. Assessment of a Statewide Palliative Care Team Training Course: COMFORT Communication for Palliative Care Teams.

    Science.gov (United States)

    Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith

    2016-07-01

    Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication

  11. The Effect of Community-Based Specialist Palliative Care Teams on Place of Care.

    Science.gov (United States)

    Seow, Hsien; Dhaliwal, Gagan; Fassbender, Konrad; Rangrej, Jagadish; Brazil, Kevin; Fainsinger, Robin

    2016-01-01

    Prior research on community-based specialist palliative care teams used outcome measures of place of death and/or dichotomous outcome measures of acute care use in the last two weeks of life. However, existing research seldom measured the diverse places of care used and their timing prior to death. The study objective was to examine the place of care in the last 30 days of life. In this retrospective cohort study, patients who received care from a specialist palliative care team (exposed) were matched by propensity score to patients who received usual care in the community (unexposed) in Ontario, Canada. Measured was the percentage of patients in each place of care in the last month of life as a proportion of the total cohort. After matching, 3109 patients were identified in each group, where 79% had cancer and 77% received end-of-life home care. At 30 days compared to 7 days before death, the exposed group's proportions rose from 33% to 41% receiving home care and 14% to 15% in hospital, whereas the unexposed group's proportions rose from 28% to 32% receiving home care and 16% to 22% in hospital. Linear trend analysis (proportion over time) showed that the exposed group used significantly more home care services and fewer hospital days (p care. Examining place of care in the last month can effectively illustrate the service use trajectory over time.

  12. Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey.

    Science.gov (United States)

    Eva, Gail; Morgan, Deidre

    2018-05-01

    Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists' perceptions of opportunities and challenges when delivering and developing palliative care services. A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.

  13. Creation of minimum standard tool for palliative care in India and self-evaluation of palliative care programs using it

    Directory of Open Access Journals (Sweden)

    M R Rajagopal

    2014-01-01

    Full Text Available Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. Aims: (1 Creation of minimum National Standards for Palliative Care for India. (2 Development of a tool for self-evaluation of palliative care organizations. (3 Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. Materials and Methods: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. Results: Forty-nine (57% palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. Conclusions: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.

  14. Proactive palliative care for patients with COPD (PROLONG: a pragmatic cluster controlled trial

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    Duenk RG

    2017-09-01

    Full Text Available RG Duenk,1 C Verhagen,1 EM Bronkhorst,2 PJWB van Mierlo,3,4 MEAC Broeders,5 SM Collard,6 PNR Dekhuijzen,7 KCP Vissers,1 Y Heijdra,7,* Y Engels1,* 1Department of Anesthesiology, Pain and Palliative Medicine, 2Department of Health Evidence, Radboud University Medical Center, Nijmegen, 3Department of Supportive and Palliative Medicine, 4Department of Geriatric Medicine, Rijnstate Hospital, Arnhem, 5Department of Pulmonary Diseases, Jeroen Bosch Hospital, ‘s-Hertogenbosch, 6Department of Pulmonary Diseases, Meander Medical Center, Amersfoort, 7Department of Pulmonary Diseases, Radboud University Medical Center, Nijmegen, the Netherlands *These authors contributed equally to this work Background and aim: Patients with advanced chronic obstructive pulmonary disease (COPD have poor quality of life. The aim of this study was to assess the effects of proactive palliative care on the well-being of these patients.Trial registration: This trial is registered with the Netherlands Trial Register, NTR4037.Patients and methods: A pragmatic cluster controlled trial (quasi-experimental design was performed with hospitals as cluster (three intervention and three control and a pretrial assessment was performed. Hospitals were selected for the intervention group based on the presence of a specialized palliative care team (SPCT. To control for confounders, a pretrial assessment was performed in which hospitals were compared on baseline characteristics. Patients with COPD with poor prognosis were recruited during hospitalization for acute exacerbation. All patients received usual care while patients in the intervention group received additional proactive palliative care in monthly meetings with an SPCT. Our primary outcome was change in quality of life score after 3 months, which was measured using the St George Respiratory Questionnaire (SGRQ. Secondary outcomes were, among others, quality of life at 6, 9 and 12 months; readmissions: survival; and having made

  15. Learning to care: medical students’ reported value and evaluation of palliative care teaching involving meeting patients and reflective writing

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    Erica Borgstrom

    2016-11-01

    Full Text Available Abstract Background Over recent years there has been an increase in teaching of both palliative care and reflective practice in UK medical schools. The palliative care teaching at the University of Cambridge School of Clinical Medicine is multi-faceted and involves students writing reflective essays after individually meeting patients approaching the end of life during their final year general practice and hospital medicine placements. This paper draws on two studies examining this teaching element to analyse what the students found valuable about it and to comment on the practice of meeting patients and subsequent reflective writing. Methods Two studies have explored students’ perceptions of these course components. The first was a thematic analysis of 234 reflective essays from 123 students written in 2007-2008, including examining what students wrote about the exercise itself. The second project involved a semi-structured questionnaire that students completed anonymously; this paper reports on the free text elements of that study [sample size =107]. Since similar themes were found in both studies, the coding structures from each project were compared and combined, enabling triangulation of the findings around what the students found valuable from the palliative care teaching involving meeting patients and reflective writing. Results Overall, students reported that these components of the palliative care teaching are valuable. Four main themes were identified as aspects that students valued: (1 dedicated time with patients, (2 learning about wider elements of treatment and holistic care, (3 practicing communication skills, and (4 learning about themselves through reflective writing. Some students expressed a dislike for having to formally write a reflective essay. Conclusion It is possible to arrange for all of the medical students to individually meet at least two patients receiving palliative or end of life care. Students found these

  16. 'Peace' and 'life worthwhile' as measures of spiritual well-being in African palliative care: a mixed-methods study.

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

    2013-06-10

    Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients' spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations. The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items' content validity, and (2) quantitative data collection (n = 285 patients) using the POS and the Spirit 8 to assess construct validity. (1) Peace was interpreted according to the themes 'perception of self and world', 'relationship to others', 'spiritual beliefs' and 'health and healthcare'. Life worthwhile was interpreted in relation to 'perception of self and world', 'relationship to others' and 'identity'. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r = 0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r = 0.18) (both p spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population.

  17. Caring for Life-Limiting Illness in Ethiopia: A Mixed-Methods Assessment of Outpatient Palliative Care Needs.

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    Reid, Eleanor Anderson; Gudina, Esayas Kebede; Ayers, Nicola; Tigineh, Wondimagegnu; Azmera, Yoseph Mamo

    2018-05-01

    Palliative care aims to reduce physical suffering and the emotional, spiritual, and psychosocial distress of life-limiting illness. Palliative care is a human right, yet there are vast disparities in its provision: of the 40 million people globally in need of palliative care, less than 10% receive it, largely in high-income countries. There is a particular paucity of data on palliative care needs across the spectrum of incurable disease in Ethiopia. The aims of this research were to assess the overall burden of life-limiting illness, the costs associated with life-limiting illness, and barriers to accessing palliative care in Ethiopia. Mixed-methods case-series. One hundred adults (mean age: 43.7 ± 14 years, 64% female) were recruited at three outpatient clinics (oncology, HIV, noncommunicable disease) and hospice patient homes in Ethiopia. Four internationally validated questionnaires were used to assess physical symptoms, psychosocial distress, and disability. In-depth interviews gauged poverty level, costs of care, and end-of-life preferences. Qualitative data were analyzed by thematic content, quantitative data by standard descriptive, frequency and regression analyses. In oncology, 95.5% of the population endorsed moderate or severe pain, while 24% were not prescribed analgesia. Importantly, 80% of the noncommunicable disease population reported moderate or severe pain. The mean psychosocial distress score was 6.4/10. Severe disability was reported in 26% of the population, with mobility most affected. Statistically significant relationships were found between pain and costs, and pain and lack of well-being. Very high costs were reported by oncology patients. Oncology withstanding, the majority of subjects wished to die at home. Oncology patients cited pain control as the top reason they preferred a hospital death. There are extensive unmet palliative care needs in Ethiopia. Untreated pain and high costs of illness are the major contributors to

  18. Complex contradictions in conceptualisations of 'dignity' in palliative care.

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    Williams, Lisa; Trussardi, Gabriella; Black, Stella; Moeke-Maxwell, Tess; Frey, Rosemary; Robinson, Jackie; Gott, Merryn

    2018-01-02

    Internationally, increasing attention is being paid to understanding patient experiences of health care. Within palliative care, the Views of Informal Carers - Evaluation of Services (VOICES) questionnaire is commonly used for this purpose. Among its objectives is to ask family members if their relatives were treated with dignity at the end of life. This is regarded as useful for understanding the quality of the health care received. To highlight the differences between family members' reports of dignity in the care provided to their relatives at the end of life, as reported in the VOICE