Sample records for african palliative outcome

  1. Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale

    Directory of Open Access Journals (Sweden)

    Moll Tony


    Full Text Available Abstract Background Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale in a multi-centred international study. Methods Validation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearman's rank tests; Phase 3. Internal consistency (Cronbach's alpha calculated twice using 2 datasets, test-retest reliability (intraclass correlation coefficients calculated for 2 time points and time to complete (calculated twice using 2 datasets. Results The validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers demonstrated good interpretation; Phase 2. POS-MVQoLI Spearman's rank correlations were low-moderate as expected (N = 285; Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2 Cronbach's Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89; median time to complete 7 mins, reducing to 5 mins at second visit. Conclusions The APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa.

  2. Intention, procedure, outcome and personhood in palliative sedation and euthanasia. (United States)

    Materstvedt, Lars Johan


    Palliative sedation at the end of life has become an important last-resort treatment strategy for managing refractory symptoms as well as a topic of controversy within palliative care. Furthermore, palliative sedation is prominent in the public debate about the possible legalisation of voluntary assisted dying (physician-assisted suicide and euthanasia). This article attempts to demonstrate that palliative sedation is fundamentally different from euthanasia when it comes to intention, procedure, outcome and the status of the person. Nonetheless, palliative sedation in its most radical form of terminal deep sedation parallels euthanasia in one respect: both end the experience of suffering. However, only the latter intentionally ends life and also has this as its goal. There is the danger that deep sedation could bring death forward in time due to particular side effects of the treatment. Still that would, if it happens, not be intended, and accordingly is defensible in view of the doctrine of double effect.

  3. Outcomes 'out of africa': the selection and implementation of outcome measures for palliative care in Africa

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    Downing Julia


    Full Text Available Abstract Background End-of-life care research across Africa is under-resourced and under-developed. A central issue in research in end-of-life care is the measurement of effects and outcomes of care on patients and families. Little is known about the experiences of health professionals' selection and implementation of outcome measures (OM in clinical care, research, audit, or teaching in Africa. Methods An online survey was undertaken of those using outcome measures across the region, as part of the PRISMA project. A questionnaire addressing the use of OMs was developed for a similar survey in Europe and adapted for Africa. Participants were sampled through the contacts database of APCA. Invitation emails were sent out in January 2010 and reminders in February 2010. Results 168/301 invited contacts (56% from 24 countries responded, with 78 respondents having previously used OM (65% in clinical practice, 12% in research and 23% for both. Main reasons for not using OM were a lack of guidance/training on using and analysing OM, with 49% saying that they would use the tools if this was provided. 40% of those using OM in clinical practice used POS, and 80% used them to assess, evaluate and monitor change. The POS was also the main tool used in research, with the principle criteria for use being validation in Africa, access to the tool and time needed to complete it. Challenges to the use of tools were shortage of time and resources, lack of guidance and training for the professionals, poor health status of patients and complexity of OM. Researchers also have problems analysing OM data. The APCA African POS was the most common version of the POS used, and was reported as a valuable tool for measuring outcomes. Respondents indicated the ideal outcome tool should be short, multi-dimensional and easy to use. Conclusion This was the first survey on professionals' views on OM in Africa. It showed that the APCA African POS was the most frequently OM used

  4. Inoperable esophageal cancer and outcome of palliative care

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    Sima Besharat; Ali Jabbari; Shahryar Semnani; Abbasali Keshtkar; Jeran Marjani


    AIM: To determine the outcome of esophageal cancer patients referred for palliative care, in Gorgan and Gonbad gastrointestinal clinics, northeast of Iran.METHODS: This cross-sectional study was done on inoperable esophageal cancer cases referred to gastrointestinal clinics in Gorgan and Gonbad city (2005-2006). Demographic data were collected during the procedure and cases were followed up every one month. Improvement proportion was calculated with 95% confidence interval, to determine the rate of improvement. Survival analysis and Kaplan-Meier methods were used to estimate the duration of palliative care effectiveness.RESULTS: We recruited 39 cases into the study. Squamous cell carcinoma was the most prevalent (92.3%). The middle third of the esophagus was involved predominantly (51.3%). Dilation was the most preferred method (89.7%) and stenting was done in 4 cases. Decreasing dysphagia score was not related to palliation method or pathology type of carcinoma. Age of the patients was significantly related to the improvement of dysphagia score. Mean survival time was 137.6d and median was 103d.CONCLUSION: Results of this study showed a low survival rate after palliative care in esophageal cancer cases despite dysphagia scores' improvement after dilating or stenting.

  5. Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives


    Shahid, Shaouli; Bessarab, Dawn; van Schaik, Katherine D; Aoun, Samar M.; Thompson, Sandra C


    Background: Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods: In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient a...

  6. Utility of pharmacists on clinical outcomes of patients in palliative care: A short review


    Brkić, Jovana; Tasić, Ljiljana; id_orcid 0000-0001-9584-0341; Krajnović, Dušanka


    Pharmacists as the most accessible health care professionals in outpatient settings can improve palliative patient care. The aim of this review was to assess utility of pharmacists (the effectiveness of pharmacists' interventions) on clinical outcomes of patients in palliative care at all levels of health care and in home care. Two electronic databases were searched: PubMed and SCOPUS (last searched August 2014). Primary studies, of any type of research design, in English, related to clinical...

  7. Outcome measures of spiritual care in palliative home care: a qualitative study

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    Vermandere, M.; Lepeleire, J. De; Mechelen, W. van; Warmenhoven, F.C.; Thoonsen, B.A.; Aertgeerts, B.


    The purpose of this study was to identify key outcome measures of spiritual care in palliative home care. A qualitative study was conducted with experts from 3 stakeholder groups (physicians, professional spiritual caregivers, and researchers) representing 2 countries (Belgium and The Netherlands).

  8. Integration of Early Specialist Palliative Care in Cancer Care and Patient Related Outcomes: A Critical Review of Evidence (United States)

    Salins, Naveen; Ramanjulu, Raghavendra; Patra, Lipika; Deodhar, Jayita; Muckaden, Mary Ann


    Introduction: World Health Organization and American Society of Clinical Oncology recommend early integration of specialist palliative care in patients with cancer. This paper focuses on critical review of evidence on integration of early specialist palliative care in cancer care and patient-related outcomes. Methods: The question for the literature search was – Does integration of early specialist palliative care in cancer care influences patient-related outcomes? 31 articles related to literature search review question were included in this paper. Results: Ten patient-related outcomes of early specialist palliative care in adult cancer care was studied. Studies by Temel et al. (2012), Bakitas et al. (2009), Zimmermann et al. (2014), Rugno et al. (2014), Lowery et al. (2013) and Walker et al. (2014) showed early specialist palliative care improves health-related quality of life (HRQOL). Studies by Pirl et al. (2012), Lowery et al. (2013), and Walker et al. (2014) showed early specialist palliative care improved mood depression and anxiety. Studies by Zimmermann et al. and Rugno et al. (2014) showed symptom control benefit of early specialist palliative care. Studies by Temel (2010), Bakitas (2015) and Rugno et al. (2014) showed survival improvement with early specialist palliative care. All these studies were carried in ambulatory palliative care setting. No survival benefit of palliative care intervention was seen in inpatient palliative care setting. The studies by Geer et al. (2012), Rugno et al. (2014), and Lowery et al. (2013) showed that early palliative care intervention positively influences treatment decision making. All the studies showed that palliative care intervention group received less intravenous chemotherapy in last few weeks of life. Studies by Yoong et al. and Temel et al. (2011) shows early specialist palliative care improves advanced care planning. Studies by Temel et al. (2010), Greer et al. (2012), McNamara et al. (2013), Hui et al. (2014

  9. Integration of early specialist palliative care in cancer care and patient related outcomes: A critical review of evidence

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    Naveen Salins


    Conclusions: In adult oncology, there is evidence to suggest early specialist palliative care improves HRQOL, mood, treatment decision-making, health care utilization, advanced care planning, patient satisfaction, and end-of-life care. There is moderate evidence to support the role of early specialist palliative care intervention in improvement of symptoms, survival, and health-related communication. There is limited evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies on barriers and negative patient outcomes may provide useful insights toward restructuring early specialist palliative care interventions.

  10. Implementing Outcome Measures Within an Enhanced Palliative Care Day Care Model.

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    Kilonzo, Isae


    Specialist palliative care day care (SPDC) units provide an array of services to patients and their families and can increase continuity of care between inpatient and homecare settings. A multidisciplinary teamwork approach is emphasized, and different models of day care exist. Depending on the emphasis of care, the models can be social, medical, therapeutic, or mixed. We describe our experience of introducing an enhanced therapeutic specialist day care model and using both patient- and carer-rated tools to monitor patient outcomes.

  11. End-of-life experiences and expectations of Africans in Australia: cultural implications for palliative and hospice care. (United States)

    Hiruy, Kiros; Mwanri, Lillian


    The ageing and frail migrants who are at the end of life are an increasing share of migrants living in Australia. However, within such populations, information about end-of-life experiences is limited, particularly among Africans. This article provides some insights into the sociocultural end-of-life experiences of Africans in Australia and their interaction with the health services in general and end-of-life care in particular. It provides points for discussion to consider an ethical framework that include Afro-communitarian ethical principles to enhance the capacity of current health services to provide culturally appropriate and ethical care. This article contributes to our knowledge regarding the provision of culturally appropriate and ethical care to African patients and their families by enabling the learning of health service providers to improve the competence of palliative care systems and professionals in Australia. Additionally, it initiates the discussion to highlight the importance of paying sufficient attention to a diverse range of factors including the migration history when providing palliative and hospice care for patients from African migrant populations.

  12. Does primary brachial plexus surgery alter palliative tendon transfer surgery outcomes in children with obstetric paralysis?

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    Özkan Safiye


    Full Text Available Abstract Background The surgical management of obstetrical brachial plexus palsy can generally be divided into two groups; early reconstructions in which the plexus or affected nerves are addressed and late or palliative reconstructions in which the residual deformities are addressed. Tendon transfers are the mainstay of palliative surgery. Occasionally, surgeons are required to utilise already denervated and subsequently reinnervated muscles as motors. This study aimed to compare the outcomes of tendon transfers for residual shoulder dysfunction in patients who had undergone early nerve surgery to the outcomes in patients who had not. Methods A total of 91 patients with obstetric paralysis-related shoulder abduction and external rotation deficits who underwent a modified Hoffer transfer of the latissimus dorsi/teres major to the greater tubercle of the humerus tendon between 2002 and 2009 were retrospectively analysed. The patients who had undergone neural surgery during infancy were compared to those who had not in terms of their preoperative and postoperative shoulder abduction and external rotation active ranges of motion. Results In the early surgery groups, only the postoperative external rotation angles showed statistically significant differences (25 degrees and 75 degrees for total and upper type palsies, respectively. Within the palliative surgery-only groups, there were no significant differences between the preoperative and postoperative abduction and external rotation angles. The significant differences between the early surgery groups and the palliative surgery groups with total palsy during the preoperative period diminished postoperatively (p 0.05, respectively for abduction but not for external rotation. Within the upper type palsy groups, there were no significant differences between the preoperative and postoperative abduction and external rotation angles. Conclusions In this study, it was found that in patients with total

  13. Outcomes after curative or palliative surgery for locoregional recurrent breast cancer

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    Juhl, Alexander Andersen; Mele, Marco; Damsgaard, Tine Engberg


    Background Locoregional recurrence (LRR) after breast cancer is an independent predictor for later systemic disease and poor long-term outcome. As the surgical treatment is complex and often leaves the patient with extensive defects, reconstructive procedures involving flaps, and thus plastic...... surgical assistance, are often required. The aim of the present study was to evaluate our institution’s approach to surgical treatment for locoregional recurrence of a breast cancer. Methods In the present retrospective, single-centre study, we evaluate our experience with 12 patients who underwent surgery...... occurred in four (33 %) of the patients. Median overall survival was 22 months, regardless of the surgery being curative or palliative. A median disease-free survival of 18 months was achieved for patients having achieved radicality. Conclusions Both wide local excision and full thickness chest wall...

  14. Educational needs of general practitioners in palliative care : Outcome of a focus group study

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    Meijler, WJ; Van Heest, F; Otter, R; Sleijfer, DT


    Background. The objective of this study was to identify the general practitioner's perception of educational needs in palliative care. Method. A qualitative study with focus groups was performed. Results. General practitioners estimate palliative care as an important and valuable part of primary car

  15. Palliative care and support for persons with HIV/AIDS in 7 African countries: implementation experience and future priorities. (United States)

    Alexander, Carla S; Memiah, Peter; Henley, Yvonne B; Kaiza-Kangalawe, Angela; Shumbusho, Anna Joyce; Obiefune, Michael; Enejoh, Victor; Stanis-Ezeobi, Winifred; Eze, Charity; Odion, Ehekhaye; Akpenna, Donald; Effiong, Amana; Miriti, Kenneth; Aduda, Samson; Oko, John; Melaku, Gebremedhin D; Baribwira, Cyprien; Umutesi, Hassina; Shimabale, Mope; Mugisa, Emmanuel; Amoroso, Anthony


    To combat morbidity and mortality from the worldwide epidemic of the human immunodeficiency virus (HIV), the United States Congress implemented a President's Emergency Plan for AIDS Relief (PEPFAR) in 30 resource-limited countries to integrate combination antiretroviral therapy (ART) for both prevention and cure. Over 35% of eligible persons have been successfully treated. Initial legislation cited palliative care as an essential aspect of this plan but overall health strengthening became critical to sustainability of programming and funding priorities shifted to assure staffing for care delivery sites; laboratory and pharmaceutical infrastructure; data collection and reporting; and financial management as individual countries are being encouraged to assume control of in-country funding. Given infrastructure requisites, individual care delivery beyond ART management alone has received minimal funding yet care remains necessary for durable viral suppression and overall quality of life for individuals. Technical assistance staff of one implementing partner representing seven African countries met to clarify domains of palliative care compared with the substituted term "care and support" to understand potential gaps in on-going HIV care. They prioritized care needs as: 1) mental health (depression and other mood disorders); 2) communication skills (age-appropriate disclosure of HIV status); 3) support of care-providers (stress management for sustainability of a skilled HIV workforce); 4) Tied Priorities: symptom management in opportunistic infections; end-of-life care; spiritual history-taking; and 5) Tied Priorities: attention to grief-related needs of patients, their families and staff; and management of HIV co-morbidities. This process can inform health policy as funding transitions to new priorities.

  16. EPEC-O for African Americans - Plenary 2 AA - Models of Comprehensive Care (United States)

    The second plenary of the EPEC-O (Education in Palliative and End-of-Life Care for Oncology) Self-Study: Cultural Considerations When Caring for African Americans reviews the various models for integration of hospice and palliative care into traditional cancer care that have been shown to improve outcomes.

  17. Best practices in developing a national palliative care policy in resource limited settings: lessons from five African countries. (United States)

    Luyirika, Emmanuel Bk; Namisango, Eve; Garanganga, Eunice; Monjane, Lidia; Ginindza, Ntombi; Madonsela, Gugulethu; Kiyange, Fatia


    Given the high unmet need for palliative care in Africa and other resource limited settings, it is important that countries embrace the public health approach to increasing access through its integration within existing healthcare systems. To give this approach a strong foundation that would ensure sustainability, the World Health Organisation urges member states to ensure that policy environments are suitable for this intervention. The development, strengthening, and implementation of national palliative care policies is a priority. Given the lack of a critical mass of palliative care professionals in the region and deficiency in documenting and sharing best practices as part of information critical for regional development, policy development becomes a complex process. This article shares experiences with regard to best practices when advocating the national palliative care policies. It also tells about policy development process, the important considerations, and cites examples of policy content outlines in Africa.

  18. EPEC-O - Plenary AA - Cancer & the African American Experience (United States)

    The first plenary of the EPEC-O (Education in Palliative and End-of-Life Care for Oncology) Self-Study: Cultural Considerations When Caring for African Americans explores the many factors that lead to inequalities in cancer care outcomes for African Americans.

  19. Protocol for a systematic review of preference-based instruments for measuring care-related outcomes and their suitability for the palliative care setting (United States)

    Al-Janabi, Hareth; Currow, David; Hoefman, Renske; Ratcliffe, Julie


    Introduction Despite informal caregivers' integral role in supporting people affected by disease or disability, economic evaluations often ignore the costs and benefits experienced by this group, especially in the palliative setting. The purpose of this systematic review is to identify preference-based instruments for measuring care-related outcomes and provide guidance on the selection of instrument in palliative care economic evaluations. Methods and analysis A comprehensive search of the literature will be conducted from database inception (ASSIA; CINAHL; Cochrane library including DARE, NHS EED, HTA; Econlit; Embase; PsychINFO; PubMed). Published peer-reviewed, English-language articles reporting preference-based instruments for measuring care-related outcomes in any clinical area will be included. One researcher will complete the searches and screen the results for potentially eligible studies. A randomly selected subset of 10% citations will be independently screened by two researchers. Any disagreement will be resolved by consensus among the research team. Subsequently, a supplementary search will identify studies detailing the development, valuation, validation and application of the identified instruments. The degree of suitability of the instruments for palliative economic evaluations will be assessed using criteria in the International Society for Quality of Life Research minimum standards for patient-reported outcome measures, the checklist for reporting valuation studies of multiattribute utility-based instruments and information on the development of the instrument in the palliative setting. A narrative summary of the included studies and instruments will be provided; similarities and differences will be described and possible reasons for variations explored. Recommendations for practice on selection of instruments in palliative care economic analyses will be provided. Ethics and dissemination This is a planned systematic review of published

  20. Clinical outcomes of self-expandable metal stents in palliation of malignant anastomotic strictures caused by recurrent gastric cancer

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    Yu Kyung Cho; Sang Woo Kim; Kwan Woo Nam; Jae Hyuck Chang; Jae Myung Park; Jeong-Jo Jeong; In Seok Lee; Myung-Gyu Choi; In-Sik Chung


    AIM: To examine the technical feasibility and clinical outcomes of the endoscopic insertion of a selfexpandable metal stent (SEMS) for the palliation of a malignant anastomotic stricture caused by recurrent gastric cancer. METHODS: The medical records of patients, who had obstructive symptoms caused by a malignant anastomotic stricture after gastric surgery and underwent endoscopic insertion of a SEMS from January 2001 to December 2007 at Kangnam St Mary's Hospital, were reviewed retrospectively. RESULTS: Twenty patients (15 male, mean age 63 years) were included. The operations were a total gastrectomy with esophagojejunostomy ( n = 12), subtotal gastrectomy with Billroth-Ⅰ reconstruction ( n = 2) and subtotal gastrectomy with Billroth- Ⅱ reconstruction ( n = 8). The technical and clinical success rates were 100% and 70%, respectively. A small bowel or colon stricture was the reason for a lack of improvement in symptoms in 4 patients. Two of these patients showed improvement in symptoms after another stent was placed. Stent reobstruction caused by tumor ingrowth or overgrowth occurred in 3 patients (15%) within 1 mo after stenting. Stent migration occurred with a covered stent in 3 patients who underwent a subtotal gastrectomy with Billroth-Ⅱ reconstruction. Two cases of partial stent migration were easily treated with a second stent or stent repositioning. The median stent patency was 56 d (range, 5-439 d). The median survival was 83 d (range, 12-439 d). CONCLUSION: Endoscopic insertion of a SEMS provides safe and effective palliation of a recurrent anastomotic stricture caused by gastric cancer. A meticulous evaluation of the presence of other strictures before inserting the stent is essential for symptom improvement.

  1. Long-term outcomes of palliative colonic stenting versus emergency surgery for acute proximal malignant colonic obstruction: a multicenter trial (United States)

    Siddiqui, Ali; Cosgrove, Natalie; Yan, Linda H.; Brandt, Daniel; Janowski, Raymond; Kalra, Ankush; Zhan, Tingting; Baron, Todd H.; Repici, Allesandro; Taylor, Linda Jo; Adler, Douglas. G.


    Background and study aims Long-term data are limited regarding clinical outcomes of self-expanding metal stents as an alternative for surgery in the treatment of acute proximal MBO. The aim of this study was to compare the long-term outcomes of stenting to surgery for palliation in patients with incurable obstructive CRC for lesions proximal to the splenic flexure. Patients and methods Retrospective multicenter cohort study of obstructing proximal CRC patients with who underwent insertion of a SEMS (n = 69) or surgery (n = 36) from 1999 to 2014. The primary endpoint was relief of obstruction. Secondary endpoints included technical success, duration of hospital stay, early and late adverse events (AEs) and survival. Results Technical success was achieved in 62/69 (89.8 %) patients in the SEMS group and in 36 /36 (100 %) patients who underwent surgery (P = 0.09). In the SEMS group, 10 patients underwent stenting as a bridge to surgery and 59 underwent stent placement for palliation. Clinical relief was achieved in 78 % of patients with stenting and in 100 % of patients who underwent surgery (P group (7.2 % vs. 30.5 %, P = 0.003). Hospital mortality for the SEMS group was 0 % compared to 5.6 % in the surgery group (P = 0.11). Patients in the SEMS group had a significantly shorter median hospital stay (4 days) as compared to the surgery group (8 days) (P group (73.9 %) than the surgery group (97.3 %; P = 0.003). SEMS placement was associated with higher long-term complication rates compared to surgery (21 % and 11 % P = 0.27). Late SEMS AEs included occlusion (10 %), migration (5 %), and colonic ulcer (6 %). At 120 weeks, survival in the SEMS group was 5.6 % vs. 0 % in the surgery group (P = 0.8). Conclusions Technical and clinical success associated with proximal colonic obstruction are higher with surgery when compared to SEMS, but surgery is associated with longer hospital stays and more


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    R. R. Bidyamshin


    Full Text Available Introduction. Hip dislocation is the key problem in patients with severe cerebral palsy (GMFCS IV, V older than 10 years that affects life quality and limits functional capabilities. In the present study the authors evaluated the efficiency of the proximal femoral resection arthroplasty (pfra and valgus proximal osteotomy of the femur (VPOF associated with femoral head resection for pain control, improvement of postural management, hygiene and verticalization with total weight-bearing and correction of accompanying orthopaedic deformities. Material and мethods. A retrospective study compared two groups of patients where PFRA (7 cases, 13 hips or VPOF (14 patients, 23 hips were performed. Level V of GMFCS was reported in 10 patients, and level IV of GMFCS – in 11 patients. The mean age at time of surgery was 15.3±3.9 y.o. PFRA was performed in 7 cases (13 joints and VPOF – in 14 patients (23 joints. Results. The authors did not observe any difference between the methods in respect of pain control, postural management, comfortable sitting position and hygiene. The verticalization with total weight-bearing and life quality improvement was achieved only after PVOF with femoral head resection associated with simultaneous knee and foot deformity correction performed according to the principles of Single-Event Multilevel Orthopedic Surgery. Conclusion. Both palliative methods allow to control pain syndrome, to achieve satisfactory postural management, comfortable sitting position and hygiene. But only VPOF with simultaneous knee and foot deformity correction provides possibility to verticalize the patient with weight-bearing using different orthopedic devices.

  3. Psychometric Properties of a Generic, Patient-Centred Palliative Care Outcome Measure of Symptom Burden for People with Progressive Long Term Neurological Conditions (United States)

    Gao, Wei; Crosby, Vincent; Wilcock, Andrew; Burman, Rachael; Silber, Eli; Hepgul, Nilay; Chaudhuri, K Ray; Higginson, Irene J.


    Background There is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population. Data and Methods Data were merged from a Phase II palliative care intervention study in multiple sclerosis (MS) and a longitudinal observational study in idiopathic Parkinson’s disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The IPOS Neuro-S8 was assessed for its data quality, score distribution, ceiling and floor effects, reliability, factor structure, convergent and discriminant validity, concurrent validity with generic (Palliative care Outcome Scale) and condition specific measures (Multiple Sclerosis Impact Scale; Non-motor Symptoms Questionnaire; Parkinson’s Disease Questionnaire), responsiveness and minimally clinically important difference. Results Of the 134 participants, MS patients had a mean Extended Disability Status Scale score 7.8 (SD = 1.0), patients with an IPD, MSA or PSP were in Hoehn & Yahr stage 3–5. The IPOS Neuro-S8 had high data quality (2% missing), mean score 8 (SD = 5; range 0–32), no ceiling effects, borderline floor effects, good internal consistency (Cronbach’s α = 0.7) and moderate test-retest reliability (intraclass coefficient = 0.6). The results supported a moderately correlated two-factor structure (Pearson’s r = 0.5). It was moderately correlated with generic and condition specific measures (Pearson’s r: 0.5–0.6). There was some evidence for discriminant validity in IPD, MSA and PSP (p = 0.020), and for good responsiveness and longitudinal construct validity. Conclusions IPOS Neuro-S8 shows acceptable to promising psychometric properties in common forms of progressive LTNCs. Future work needs to confirm these findings with larger samples and its usefulness in wider disease groups. PMID

  4. Team networking in palliative care

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    Odette Spruyt


    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.

  5. Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

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    Koffman Jonathan


    Full Text Available Abstract Background Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients. Methods/Design Mortality followback survey (with a nested case-control study of home vs. hospital deaths conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death. Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified. Discussion Collecting data on end

  6. Role of Mitochondrial Inheritance on Prostate Cancer Outcome in African-American Men (United States)


    AD_________________ Award Number: W81XWH-11-1-0737 TITLE: Role of Mitochondrial Inheritance on Prostate Cancer Outcome in...2013-29 Sept 2014 4. TITLE AND SUBTITLE Role of Mitochondrial Inheritance on Prostate Cancer Outcome in African-American Men 5a. CONTRACT...13. SUPPLEMENTARY NOTES 14. ABSTRACT We are examining the hypothesis that mitochondrial inheritance plays a significant role in

  7. Longitudinal Links between Contextual Risks, Parenting, and Youth Outcomes in Rural African American Families. (United States)

    Kim, Sooyeon; Brody, Gene H.; Murry, Velma McBride


    Collected longitudinal data from rural, African American, single mother-headed families with young adolescents to examine longitudinal links between contextual risks, parenting, and youth outcome. Accumulated risks related to lower levels of the competence-promoting parenting practices that were linked directly with youth outcomes via youth…

  8. Patient Characteristics and Treatment Outcomes for African American, Hispanic, and White Adolescents in DATOS-A. (United States)

    Rounds-Bryant, Jennifer L.; Staab, Jennifer


    Compared background, pre-treatment characteristics, and post-treatment outcomes of African American, Hispanic, and white adolescent substance abusers participating in the Drug Abuse Treatment Outcome Studies for Adolescents (DATOS-A). Found that patients were similar with respect to basic pre-treatment demographics. Compared to white adolescents,…

  9. Palliative Care (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 ...

  10. Comparison of Substance Use Typologies as Predictors of Sexual Risk Outcomes in African American Adolescent Females. (United States)

    Swartzendruber, Andrea; Sales, Jessica M; Brown, Jennifer L; DiClemente, Ralph J; Rose, Eve S


    African American female adolescents have a disproportionate risk of sexually transmitted infections (STIs) and other adverse sexual health outcomes. Both alcohol and marijuana use have been shown to predict sexual risk among young African American women. However, no studies have attempted to differentiate alcohol and marijuana typologies use as predictors of sexual risk outcomes exclusively among adolescents who use these substances. This study compared recent alcohol and/or marijuana use as predictors of sexual risk outcomes over 18 months among 182 African American female adolescents. African American females (14-20 years) completed interviews at baseline, 6-, 12-, and 18-months. At each assessment, pregnancy testing was conducted and self-collected vaginal swab specimens were assayed for Trichomonas vaginalis, Chlamydia trachomatis, and Neisseria gonorrhoeae using DNA amplification. Logistic subject-specific random-intercept models compared sexual risk outcomes during follow-up among adolescents who reported recent use of alcohol only (AO), marijuana only (MO) or both substances (A + M) at the baseline assessment. Relative to baseline AO use, baseline MO use predicted condom non-use at last sex. Relative to AO use, A + M use predicted pregnancy. Relative to MO use, A + M use predicted pregnancy and acquisition of T. vaginalis and any STI. The results suggest that African American female adolescents who use A + M may represent a priority population for STI, HIV, and pregnancy prevention efforts.

  11. Danish Palliative Care Database

    Directory of Open Access Journals (Sweden)

    Groenvold M


    and patient completeness. Keywords: specialized palliative care, cancer, quality indicator, patient-reported outcomes, multidisciplinary conference, EORTC QLQ-C15-PAL

  12. [Social palliation]. (United States)

    Rasmussen, Holger; Langkilde, Lisbeth


    In the WHO's definition of palliative care, social support plays an important part. When a person is dying, social issues regarding the present and future wellbeing of his/her family will often be of great concern. Social aspects of palliation can be divided into two major areas--social counselling and psycho-social work. The first concerns help to maintain an income and to establish sufficient help to enable the dying person and his/her family to live as well as possible. The second involves help to deal with the new and difficult situation for both the dying person and his/her family.

  13. Ventilator withdrawal: procedures and outcomes. Report of a collaboration between a critical care division and a palliative care service. (United States)

    O'Mahony, Sean; McHugh, Marlene; Zallman, Leah; Selwyn, Peter


    To describe an institutional procedure for ventilator withdrawal and to analyze patient responses to terminal extubation, the medical records of 21 patients who underwent withdrawal of mechanical ventilation according to the process followed by an interdisciplinary palliative care team were retrospectively reviewed. The cohort was a convenience sample of sequentially treated patients in a 1048-bed urban university-affiliated medical center. Sixteen of the 21 patients were on medical or surgical floors and five patients were in critical care units. Patients were assessed for discomfort, such as dyspnea, agitation, or anxiety. Sedative and analgesic medications were administered based on clinical parameters. Palliative care clinician observations of patient reports, tachypnea,use of accessory muscles, and signs of discomfort such as agitation or anxiety were recorded for the first 4 hours after extubation. Medication use and length of survival were recorded. Fifty-seven percent were symptomatic during the extubation process and required administration of either a benzodiazepine or opioid medication. The median survival of the 18 patients who died post-extubation was 0.83 hours (interquartile range 0.5-43.8). Bolus doses of opioid or benzodiazepine medications were effective for management of symptoms in about two-thirds of patients. One-third of patients required continuous infusions. Eighteen patients died following extubation in the medical center, and three of these patients were transferred to an inpatient hospice unit. Three patients (14%) survived to discharge from the hospital. The procedure followed provides a foundation for collaboration between palliative care and critical care services to ensure continuity of care across clinical settings/units.

  14. Family-Level Factors and African American Children's Behavioral Health Outcomes: A Systematic Review (United States)

    Washington, Tyreasa; Rose, Theda; Colombo, Gia; Hong, Jun Sung; Coard, Stephanie Irby


    Background: Considerable prior research targeting African American children has focused on the pervasiveness of problematic behavior and negative risk factors associated with their development, however the influence of family on better behavioral health outcomes has largely been ignored. Objective: The purpose of this review is to examine…

  15. Nonstandard Maternal Work Schedules: Implications for African American Children's Early Language Outcomes (United States)

    Odom, Erika C.; Vernon-Feagans, Lynne; Crouter, Ann C.


    In this study, observed maternal positive engagement and perception of work-family spillover were examined as mediators of the association between maternal nonstandard work schedules and children's expressive language outcomes in 231 African American families living in rural households. Mothers reported their work schedules when their child was 24…

  16. Examining Relationships between Ethnic Identity, Family Environment, and Psychological Outcomes for African American Adolescents (United States)

    Street, Jalika; Harris-Britt, April; Walker-Barnes, Chanequa


    Ethnic identity has been linked to a number of healthy psychological outcomes for African American adolescents. The levels of conflict and cohesion in the family environment have also been found to be predictive of adolescent mental health. This study examined whether the ethnic identity and levels of conflict and cohesion in the family…

  17. Palliative Care (United States)

    ... you are a partner with the palliative care team as you all work toward the same goal — providing the best quality of life for your child for as ... Care for Children With Terminal Illness Managing Home Health Care Taking Care of You: Support ...

  18. Humanistisk palliation

    DEFF Research Database (Denmark)

    , perspektiver og diskussioner i relation til dette felt Bogen tilbyder en række nedslag i teoretiske, metodiske, tematiske, etiske og praktiske problemstillinger. I bogen er der således bl.a. kapitler, der omhandler sorg, dødsbevidsthedsbevægelsen, aktiv dødshjælp, social palliation, dødsuddannelse, dødens...

  19. Symptom Clusters in People Living with HIV Attending Five Palliative Care Facilities in Two Sub-Saharan African Countries: A Hierarchical Cluster Analysis.

    Directory of Open Access Journals (Sweden)

    Katrien Moens

    Full Text Available Symptom research across conditions has historically focused on single symptoms, and the burden of multiple symptoms and their interactions has been relatively neglected especially in people living with HIV. Symptom cluster studies are required to set priorities in treatment planning, and to lessen the total symptom burden. This study aimed to identify and compare symptom clusters among people living with HIV attending five palliative care facilities in two sub-Saharan African countries.Data from cross-sectional self-report of seven-day symptom prevalence on the 32-item Memorial Symptom Assessment Scale-Short Form were used. A hierarchical cluster analysis was conducted using Ward's method applying squared Euclidean Distance as the similarity measure to determine the clusters. Contingency tables, X2 tests and ANOVA were used to compare the clusters by patient specific characteristics and distress scores.Among the sample (N=217 the mean age was 36.5 (SD 9.0, 73.2% were female, and 49.1% were on antiretroviral therapy (ART. The cluster analysis produced five symptom clusters identified as: 1 dermatological; 2 generalised anxiety and elimination; 3 social and image; 4 persistently present; and 5 a gastrointestinal-related symptom cluster. The patients in the first three symptom clusters reported the highest physical and psychological distress scores. Patient characteristics varied significantly across the five clusters by functional status (worst functional physical status in cluster one, p<0.001; being on ART (highest proportions for clusters two and three, p=0.012; global distress (F=26.8, p<0.001, physical distress (F=36.3, p<0.001 and psychological distress subscale (F=21.8, p<0.001 (all subscales worst for cluster one, best for cluster four.The greatest burden is associated with cluster one, and should be prioritised in clinical management. Further symptom cluster research in people living with HIV with longitudinally collected symptom data to

  20. Psychometric evaluations of the efficacy expectations and Outcome Expectations for Exercise Scales in African American women. (United States)

    Murrock, Carolyn J; Gary, Faye


    This secondary analysis tested the reliability and validity of the Self-Efficacy for Exercise (SEE) and the Outcome Expectations for Exercise (OEE) scales in 126 community dwelling, middle aged African American women. Social Cognitive Theory postulates self-efficacy is behavior age, gender and culture specific. Therefore, it is important to determine ifself-efficacy scales developed and tested in older Caucasian female adults are reliable and valid in middle aged, minority women. Cronbach's alpha and construct validity using hypothesis testing and confirmatory factor analysis supported the reliability and validity of the SEE and OEE scales in community dwelling, middle aged African American women.

  1. Outcome of Patients Treated With a Single-Fraction Dose of Palliative Radiation for Cutaneous T-Cell Lymphoma

    Energy Technology Data Exchange (ETDEWEB)

    Thomas, Tarita O.; Agrawal, Priya [Department of Radiation Oncology, Northwestern University, Robert H. Lurie Comprehensive Cancer Center, Chicago, Illinois (United States); Guitart, Joan [Department of Dermatology, Northwestern University, Robert H. Lurie Comprehensive Cancer Center, Chicago, Illinois (United States); Rosen, Steven T. [Division of Hematology/Oncology, Department of Medicine, Northwestern University, Robert H. Lurie Comprehensive Cancer Center, Chicago, Illinois (United States); Rademaker, Alfred W. [Department of Preventive Medicine, Northwestern University, Robert H. Lurie Comprehensive Cancer Center, Chicago, Illinois (United States); Querfeld, Christiane [Department of Medicine/Dermatology Service, Memorial Sloan-Kettering Cancer Center, New York, New York (United States); Hayes, John P. [Department of Radiation Oncology, Northwestern University, Robert H. Lurie Comprehensive Cancer Center, Chicago, Illinois (United States); Kuzel, Timothy M. [Division of Hematology/Oncology, Department of Medicine, Northwestern University, Robert H. Lurie Comprehensive Cancer Center, Chicago, Illinois (United States); Mittal, Bharat B., E-mail: [Department of Radiation Oncology, Northwestern University, Robert H. Lurie Comprehensive Cancer Center, Chicago, Illinois (United States)


    Purpose: Cutaneous T-cell lymphoma (CTCL) is a radiosensitive tumor. Presently, treatment with radiation is given in multiple fractions. The current literature lacks data that support single-fraction treatment for CTCL. This retrospective review assesses the clinical response in patients treated with a single fraction of radiation. Methods and Materials: This study reviewed the records of 58 patients with CTCL, primarily mycosis fungoides, treated with a single fraction of palliative radiation therapy (RT) between October 1991 and January 2011. Patient and tumor characteristics were reviewed. Response rates were compared using Fisher's exact test and multiple logistic regressions. Survival rates were determined using the Kaplan-Meier method. Cost-effectiveness analysis was performed to assess the cost of a single vs a multifractionated treatment regimen. Results: Two hundred seventy individual lesions were treated, with the majority (97%) treated with ≥700 cGy; mean follow-up was 41.3 months (range, 3-180 months). Response rate by lesion was assessed, with a complete response (CR) in 255 (94.4%) lesions, a partial response in 10 (3.7%) lesions, a partial response converted to a CR after a second treatment in 4 (1.5%) lesions, and no response in 1 (0.4%) lesion. The CR in lower extremity lesions was lower than in other sites (P=.0016). Lesions treated with photons had lower CR than those treated with electrons (P=.017). Patients with lesions exhibiting large cell transformation and tumor morphology had lower CR (P=.04 and P=.035, respectively). Immunophenotype did not impact response rate (P=.23). Overall survival was significantly lower for patients with Sézary syndrome (P=.0003) and erythroderma (P<.0001). The cost of multifractionated radiation was >200% higher than that for single-fraction radiation. Conclusions: A single fraction of 700 cGy-800 cGy provides excellent palliation for CTCL lesions and is cost effective and convenient for the patient.

  2. What is palliative care? (United States)

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

  3. Nonshaved cranial surgery in black Africans: technical report and a medium-term prospective outcome study. (United States)

    Adeleye, Amos O


    Nonshaved neurosurgery, cranial or spinal, is well reported among Caucasians but hardly among native Africans. The ungroomed scalp hairs of black Africans have unique anthropological characteristics needing special attention for shaveless cranial surgery. A technical report of the execution of this surgical procedure among an indigenous patient population in a sub-Sahara African country is presented, as well as an outcome analysis in a prospective cohort over a 7-year period. A total of 303 patients (211 males, 70 %) fulfilled the criteria for this study. The surgical procedure was primary in 278 (92 %) and redo in 8 %. It was emergency surgery in 153 (51 %). They were trauma craniotomies or decompressive craniectomies in 95 cases (31 %), craniotomies for tumour resections in 86 (28 %), and the surgical dissections for other conditions in 122 (41 %). The duration of surgery ranged from 30 min to 8.5 h, mean 2.5 (SD, 1.6), median 2. In-hospital clinical outcome was good (normal status or moderate deficit on dichotomized Glasgow outcome scale (GOS)) in 273 (90.1 %) cases while surgical site infections occurred in only 10 cases (3.3 %). The type of surgery, redo or primary, did not have any significant association with the in-hospital outcome (p = 0.5), nor with the presence of surgical site infection (SSI) (p = 0.7). The length of follow-up ranged from 2 to 63 months (mean, 7) with no untoward complications reported so far. Medium-term outcome of nonshaved neurosurgery in this indigenous black Africans remains favourable with no attendant significant adverse after-effects.

  4. Antiretroviral outcomes in South African prisoners: a retrospective cohort analysis.

    Directory of Open Access Journals (Sweden)

    Natasha E C G Davies

    Full Text Available BACKGROUND AND METHODS: Little is known about antiretroviral therapy (ART outcomes in prisoners in Africa. We conducted a retrospective review of outcomes of a large cohort of prisoners referred to a public sector, urban HIV clinic. The review included baseline characteristics, sequential CD4 cell counts and viral load results, complications and co-morbidities, mortality and loss to follow-up up to 96 weeks on ART. FINDINGS: 148 inmates (133 male initiated on ART were included in the study. By week 96 on ART, 73% of all inmates enrolled in the study and 92% of those still accessing care had an undetectable viral load (<400 copies/ml. The median CD4 cell count increased from 122 cells/mm(3 at baseline to 356 cells/mm(3 by 96 weeks. By study end, 96 (65% inmates had ever received tuberculosis (TB therapy with 63 (43% receiving therapy during the study: 28% had a history of TB prior to ART initiation, 33% were on TB therapy at ART initiation and 22% developed TB whilst on ART. Nine (6% inmates died, 7 in the second year on ART. Loss to follow-up (LTF was common: 14 (9% patients were LTF whilst still incarcerated, 11 (7% were LTF post-release and 9 (6% whose movements could not be traced. 16 (11% inmates had inter-correctional facility transfers and 34 (23% were released of whom only 23 (68% returned to the ART clinic for ongoing follow-up. CONCLUSIONS: Inmates responded well to ART, despite a high frequency of TB/HIV co-infection. Attention should be directed towards ensuring eligible prisoners access ART programs promptly and that inter-facility transfers and release procedures facilitate continuity of care. Institutional TB control measures should remain a priority.

  5. Growing Pains: Palliative Care Making Gains (United States)

    An article about the growth of palliative care, a medical subspecialty that has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care.

  6. Consequences of corporal punishment among African Americans: the importance of context and outcome. (United States)

    Simons, Leslie Gordon; Simons, Ronald L; Su, Xiaoli


    Corporal punishment is a controversial practice used by the majority of American parents and is especially prevalent among African Americans. Research regarding its consequences has produced mixed results although it is clear that there is a need for considering the context within which corporal punishment is administered. To assess the impact of spanking, we employed an expanded parenting typology that includes corporal punishment. Longitudinal self-report data from a sample of 683 African American youth (54% female) were utilized to evaluate the relative impact of the resulting eight parenting styles on three outcomes: conduct problems, depressive symptoms, and school engagement. Results from Negative Binomial Regression Models indicate that the effect of corporal punishment depends upon the constellation of parenting behaviors within which it is embedded and upon the type of outcome being considered. While it is never the case that there is any added benefit of adding corporal punishment, it is also the case that using corporal punishment is not always associated with poor outcomes. Overall, however, our findings show that parenting styles that include corporal punishment do not produce outcomes as positive as those associated with authoritative parenting.

  7. Struggling to survive: sexual assault, poverty, and mental health outcomes of African American women. (United States)

    Bryant-Davis, Thema; Ullman, Sarah E; Tsong, Yuying; Tillman, Shaquita; Smith, Kimberly


    A substantial body of research documents the mental health consequences of sexual assault including, but not limited to, depression, posttraumatic stress disorder, substance use, and suicidality. Far less attention has been given to the mental health effects of sexual assault for ethnic minority women or women living in poverty. Given African American women's increased risk for sexual assault and increased risk for persistent poverty, the current study explores the relationship between income and mental health effects within a sample of 413 African American sexual assault survivors. Hierarchical regression analyses revealed that after controlling for childhood sexual abuse there were positive relationships between poverty and mental health outcomes of depression, posttraumatic stress disorder, and illicit drug use. There was no significant relationship between poverty and suicidal ideation. Counseling and research implications are discussed.

  8. 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


    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

  9. Cumulative risk and asthma outcomes in inner-city African-American youth. (United States)

    Josie, Katherine Leigh; Greenley, Rachel Neff; Drotar, Dennis


    A cumulative risk framework was used to examine the impact of the presence of multiple risk factors on key asthma outcomes (i.e., health-related quality of life [HRQoL], severity) for a sample of 149 inner-city African-American youth with asthma. The presence of a greater number of risk factors was associated with lower HRQoL and greater severity, regardless of age or gender. Cumulative risk methodology, in combination with selection of risk factors based on theoretical and empirical work, is a viable option for researchers and clinicians who are interested in examining the impact of multiple risk factors on disease functioning and status.

  10. Adverse Outcomes After Palliative Radiation Therapy for Uncomplicated Spine Metastases: Role of Spinal Instability and Single-Fraction Radiation Therapy

    Energy Technology Data Exchange (ETDEWEB)

    Lam, Tai-Chung, E-mail: [Department of Radiation Oncology, Dana-Farber/Brigham and Women' s Cancer Center, Boston, Massachusetts (United States); Uno, Hajime [Department of Biostatistics and Computational Biology, Dana-Farber Cancer Institute, Boston, Massachusetts (United States); Krishnan, Monica [Department of Radiation Oncology, Dana-Farber/Brigham and Women' s Cancer Center, Boston, Massachusetts (United States); Lutz, Steven [Department of Radiation Oncology, Blanchard Valley Regional Medical Center, Findlay, Ohio (United States); Groff, Michael [Department of Neurosurgery, Brigham and Women' s Hospital, Boston, Massachusetts (United States); Cheney, Matthew [Harvard Radiation Oncology Program, Boston, Massachusetts (United States); Balboni, Tracy [Department of Radiation Oncology, Dana-Farber/Brigham and Women' s Cancer Center, Boston, Massachusetts (United States); Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts (United States)


    Purpose: Level I evidence demonstrates equivalent pain response after single-fraction (SF) or multifraction (MF) radiation therapy (RT) for bone metastases. The purpose of this study is to provide additional data to inform the incidence and predictors of adverse outcomes after RT for spine metastases. Methods and Materials: At a single institution, 299 uncomplicated spine metastases (without cord compression, prior RT, or surgery) treated with RT from 2008 to 2013 were retrospectively reviewed. The spinal instability neoplastic score (SINS) was used to assess spinal instability. The primary outcome was time to first spinal adverse event (SAE) at the site, including symptomatic vertebral fracture, hospitalization for site-related pain, salvage surgery, interventional procedure, new neurologic symptoms, or cord compression. Fine and Gray's multivariable model assessed associations of the primary outcome with SINS, SF RT, and other significant baseline factors. Propensity score matched analysis further assessed the relationship of SF RT to first SAEs. Results: The cumulative incidence of first SAE after SF RT (n=66) was 6.8% at 30 days, 16.9% at 90 days, and 23.6% at 180 days. For MF RT (n=233), the incidence was 3.5%, 6.4%, and 9.2%, respectively. In multivariable analysis, SF RT (hazard ratio [HR] = 2.8, 95% confidence interval [CI] 1.5-5.2, P=.001) and SINS ≥11 (HR=2.5 , 95% CI 1.3-4.9, P=.007) were predictors of the incidence of first SAE. In propensity score matched analysis, first SAEs had developed in 22% of patients with SF RT versus 6% of those with MF RT cases (HR=3.9, 95% CI 1.6-9.6, P=.003) at 90 days after RT. Conclusion: In uncomplicated spinal metastases treated with RT alone, spinal instability with SINS ≥11 and SF RT were associated with a higher rate of SAEs.

  11. An intronic variant in OPRD1 predicts treatment outcome for opioid dependence in African-Americans. (United States)

    Crist, Richard C; Clarke, Toni-Kim; Ang, Alfonso; Ambrose-Lanci, Lisa M; Lohoff, Falk W; Saxon, Andrew J; Ling, Walter; Hillhouse, Maureen P; Bruce, R Douglas; Woody, George; Berrettini, Wade H


    Although buprenorphine and methadone are both effective treatments for opioid dependence, their efficacy can vary significantly among patients. Genetic differences may explain some of the variability in treatment outcome. Understanding the interactions between genetic background and pharmacotherapy may result in more informed treatment decisions. This study is a pharmacogenetic analysis of the effects of genetic variants in OPRD1, the gene encoding the δ-opioid receptor, on the prevalence of opioid-positive urine tests in African-Americans (n=77) or European-Americans (n=566) undergoing treatment for opioid dependence. Patients were randomly assigned to treatment with either methadone or buprenorphine/naloxone (Suboxone) over a 24-week open-label clinical trial, in which illicit opioid use was measured by weekly urinalysis. In African-Americans, the intronic SNP rs678849 predicted treatment outcome for both medications. Methadone patients with the CC genotype were less likely to have opioid-positive urine tests than those in the combined CT and TT genotypes group (relative risk (RR)=0.52, 95% confidence interval (CI)=0.44-0.60, p=0.001). In the buprenorphine treatment group, however, individuals with the CC genotype were more likely to have positive opioid drug screens than individuals in the combined CT and TT genotypes group (RR=2.17, 95% CI=1.95-2.68, p=0.008). These findings indicate that the genotype at rs678849 predicts African-American patient response to two common treatments for opioid dependence, suggesting that matching patients to treatment type based on the genotype at this locus may improve overall treatment efficacy. This observation requires confirmation in an independent population.

  12. Understanding palliative care. (United States)

    Martin, Caren McHenry


    While most pharmacists and other health care practitioners are familiar with the programs and philosophy of hospice, they may lack a clear understanding of palliative care. Because myths and misconceptions about palliative care abound, a review of the definitions and components of palliative care can enhance the practice of all practitioners who care for patients with chronic diseases.

  13. Outcome of left heart mechanical valve replacement in West African children - A 15-year retrospective study

    Directory of Open Access Journals (Sweden)

    Tamatey Martin


    Full Text Available Abstract Background The West African sub-region has poor health infrastructure. Mechanical valve replacement in children from such regions raises important postoperative concerns; among these, valve-related morbidity and complications of lifelong anticoagulation are foremost. Little is known about the long-term outcome of mechanical valve replacement in West Africa. We sought to determine the outcome of mechanical valve replacement of the left heart in children from this sub-region. Method We conducted a retrospective review of all consecutive left heart valve replacements in children ( Results One hundred and fourteen patients underwent mitral valve replacement (MVR, aortic valve replacement (AVR or mitral and aortic valve replacements (MAVR. Their ages ranged from 6-18 years (13.3 ± 3.1 years. All patients were in NYHA class III or IV. Median follow up was 9.1 years. MVR was performed in 91 (79.8% patients, AVR in 13 (11.4% and MAVR in 10 (8.8% patients. Tricuspid valve repair was performed concomitantly in 45 (39.5% patients. There were 6 (5.3% early deaths and 6 (5.3% late deaths. Preoperative left ventricular dysfunction (ejection fraction Conclusion Mechanical valve replacement in West African children has excellent outcomes in terms of mortality, valve-related events, and reoperation rate. Preoperative left ventricular dysfunction is the primary determinant of mortality within the first 2 years of valve replacement. The risk of valve-related complications is acceptably low. Anticoagulation is well tolerated with a very low risk of bleeding even in this socioeconomic setting.

  14. Measurement equivalence of the Patient Reported Outcomes Measurement Information System® (PROMIS® Pain Interference short form items: Application to ethnically diverse cancer and palliative care populations

    Directory of Open Access Journals (Sweden)

    Jeanne A. Teresi


    Full Text Available Reducing the response burden of standardized pain measures is desirable, particularly for individuals who are frail or live with chronic illness, e.g., those suffering from cancer and those in palliative care. The Patient Reported Outcome Measurement Information System® (PROMIS® project addressed this issue with the provision of computerized adaptive tests (CAT and short form measures that can be used clinically and in research. Although there has been substantial evaluation of PROMIS item banks, little is known about the performance of PROMIS short forms, particularly in ethnically diverse groups. Reviewed in this article are findings related to the differential item functioning (DIF and reliability of the PROMIS pain interference short forms across diverse socio-demographic groups. Methods: DIF hypotheses were generated for the PROMIS short form pain interference items. Initial analyses tested item response theory (IRT model assumptions of unidimensionality and local independence. Dimensionality was evaluated using factor analytic methods; local dependence (LD was tested using IRT-based LD indices. Wald tests were used to examine group differences in IRT parameters, and to test DIF hypotheses. A second DIF-detection method used in sensitivity analyses was based on ordinal logistic regression with a latent IRT-derived conditioning variable. Magnitude and impact of DIF were investigated, and reliability and item and scale information statistics were estimated. Results: The reliability of the short form item set was excellent. However, there were a few items with high local dependency, which affected the estimation of the final discrimination parameters. As a result, the item, “How much did pain interfere with enjoyment of social activities?” was excluded in the DIF analyses for all subgroup comparisons. No items were hypothesized to show DIF for race and ethnicity; however, five items showed DIF after adjustment for multiple comparisons in

  15. China's Recruitment of African University Students: Policy Efficacy and Unintended Outcomes (United States)

    Haugen, Heidi Østbø


    This article explores how Sino-African relations are affected by the growing number of Africans who pursue higher education in China. China actively recruits African university students in order to increase soft power and generate income from the export of education services. Semi-structured interviews with African university students suggest that…

  16. China's Recruitment of African University Students: Policy Efficacy and Unintended Outcomes (United States)

    Haugen, Heidi Østbø


    This article explores how Sino-African relations are affected by the growing number of Africans who pursue higher education in China. China actively recruits African university students in order to increase soft power and generate income from the export of education services. Semi-structured interviews with African university students suggest that…

  17. Differences between African American and European American First-Year College Students in the Relationship between Self-Efficacy, Outcome Expectations, and Academic Achievement (United States)

    DeFreitas, Stacie Craft


    First-year African American and European American college students were surveyed to examine ethnic differences in how their social cognitive beliefs (self-efficacy and outcome expectations) influenced their academic achievement. It was hypothesized that outcome expectations may better explain academic achievement for African Americans due to the…

  18. Racial Identity Attitudes, Perceived Barriers, Career Self-Efficacy, and Career Outcome Expectations among African American Male Adolescents (United States)

    Townsel, Norman L., Jr.


    Social Cognitive Career Theory (SCCT) holds that self-efficacy and outcome expectations are primary predictors of career choice goals and actions, with contextual influences moderating those choices and actions. Racial identity research indicates that African American adolescents perceive more barriers than their White counterparts. The current…

  19. Protocol for a systematic review of preference-based instruments for measuring care-related outcomes and their suitability for the palliative care setting.

    NARCIS (Netherlands)

    McCaffrey, N.; Janabi, H. Al; Currow, D.; Hoefman, R.; Ratcliffe, J.


    Introduction: Despite informal caregivers' integral role in supporting people affected by disease or disability, economic evaluations often ignore the costs and benefits experienced by this group, especially in the palliative setting. The purpose of this systematic review is to identify preference-b

  20. Hospice and Palliative Nurses Association (United States)

    ... HPNF Individual Education Scholarships Official Journals Journal of Hospice and Palliative Nursing Journal of Palliative Medicine Certification ... Contact HPNF Contact HPCC Contact National Coalition for Hospice and Palliative Care HPNA Membership Site Map Hospice ...

  1. Death is not always a failure: outcomes from implementing an online virtual patient clinical case in palliative care for family medicine clerkship

    Directory of Open Access Journals (Sweden)

    Amy Tan


    Full Text Available Background: The dying patient is a reality of medicine. Medical students, however, feel unprepared to effectively manage the complex end-of-life (EOL management issues of the dying patient and want increased experiential learning in Palliative Care. Aims: To address the need for more formal curriculum in EOL care, we developed and implemented an online virtual patient (VP clinical case in Palliative Care into the 2010–2011 Year Three Family Medicine Clerkship rotation curriculum. Methods: A mixed-method design was used to measure the change in knowledge and perceived preparedness level in EOL care before and after completing the online VP case. A survey collected qualitative descriptions of the students’ educational experience of using this case. Results: Ninety five percent (130/137 of the students voluntarily consented to have their results analyzed. The group knowledge score (n=127 increased significantly from a pre-course average of 7.69/16±2.27, to a post-course average of 10.02/16±2.39 (p<0.001. The students’ self-assessed comfort level increased significantly with all aspects of EOL management from pre-course to post-course (p<0.001. Nearly, 91.1% of the students rated the VP realism as ‘Good to Excellent’, 86% rated the case as educationally beneficial. Nearly 59.3% of students felt emotionally engaged with the VP. Qualitative feedback found that the case content was very useful and realistic, but that the interface was sometimes awkward to navigate. Conclusions: The online VP case in Palliative Care is a useful teaching tool that may help to address the need for increased formal Palliative Care experience in medical school training programs.

  2. Promoting HIV Vaccine Research in African American Communities: Does the Theory of Reasoned Action Explain Potential Outcomes of Involvement? (United States)

    Frew, Paula M; Archibald, Matthew; Martinez, Nina; del Rio, Carlos; Mulligan, Mark J


    The HIV/AIDS pandemic continues to challenge the African American community with disproportionate rates of infection, particularly among young women ages 25 to 34 years. Development of a preventive HIV vaccine may bring a substantial turning point in this health crisis. Engagement of the African American community is necessary to improve awareness of the effort and favorably influence attitudes and referent norms. The Theory of Reasoned Action (TRA) may be a useful framework for exploration of community engagement outcomes including future attendance, community mobilization, and study participation. Within the context of HIV vaccine outreach, we conducted a cross-sectional survey in early 2007 with 175 African-American adults (>/= 18 years). Confirmatory factor analysis and structural equation modeling were performed and the findings support the potential of the model in understanding behavioral intentions toward HIV vaccine research.

  3. Surgical outcomes of the Ex-PRESS glaucoma filtration device in African American and white glaucoma patients

    Directory of Open Access Journals (Sweden)

    Salim S


    Full Text Available Sarwat Salim, Haiming Du, Sumalee Boonyaleephan, Jim WanUniversity of Tennessee Health Science Center, Memphis, TN, USAPurpose: To compare the surgical outcomes of the Ex-PRESS glaucoma filtration device in African American and white glaucoma patients.Design: Retrospective comparative case series.Methods: This was a comparative case series of 36 eyes of 36 African Americans and 43 eyes of 43 whites that underwent placement of the Ex-PRESS glaucoma filtration device under a partial-thickness scleral flap for uncontrolled glaucoma. All eyes received intraoperative mitomycin C. The primary outcome measures were intraocular pressure (IOP, number of postoperative glaucoma medications, and surgical success. Surgical success was defined as IOP between 5 and 18 mm Hg, with or without glaucoma medications, without further glaucoma surgery, or loss of light perception vision. Results: Average follow-up was 31.9 ± 9.8 (range, 14.6–47 months for African Americans and 30.7 ± 8.6 (range, 14.3–47 months for whites. At 33 months, surgical success was 80.0% in the African American group and 83.3% in the white group (P = 1.00. Reasons for surgical failure included increased IOP (3 eyes, 3.8%, persistent hypotony with maculopathy (1 eye, 1.3%, and further surgery (4 eyes, 5.06%. Compared with preoperative values, the mean postoperative IOP and number of glaucoma medications were significantly reduced in both groups, and no statistical difference was observed between the two groups at 33 months. Postoperative complications were similar in the two groups.Conclusions: Similar surgical outcomes were observed in African American and white glaucoma patients after implantation of the Ex-PRESS glaucoma filtration device. This latest modification of glaucoma filtration surgery may be a better surgical option for African Americans given its potential advantages of no tissue removal, predictable outcomes related to consistent lumen size and controlled flow, fewer

  4. Litteraturstudie: akupunktur og palliation

    DEFF Research Database (Denmark)

    Larsen, Anne Bolt


    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...

  5. Danish Palliative Care Database

    DEFF Research Database (Denmark)

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


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


    Nogueira, Joseph M.; Weir, Matthew R.; Jacobs, Stephen; Haririan, Abdolreza; Breault, Denyse; Klassen, David; Evans, Deb; Bartlett, Stephen T.; Cooper, Matthew


    Background Very little is known about the long-term outcomes of African American living kidney donors (AALKDs). We undertook this study to describe renal outcomes of AALKDs several years after donation. Methods We invited 107 AALKDs to come for follow-up health evaluation. Results 39 subjects (36.4%) completed evaluation at a mean of 7.1 +/− 1.6 (range 3.9–10.2) years post-donation. The mean estimated glomerular filtration rate using the abbreviated MDRD equation (eGFR(MDRD)) at followup was 72.1 +/− 16.3 (range 42–106) ml/min per 1.73m2, and 18% of subjects had an eGFR(MDRD) of 30–59. The mean absolute and relative decrease in eGFR(MDRD) from the time of donation to followup were 30.5 +/− 16.4 ml/min per 1.73m2 and 28.8%, respectively. Subjects whose BMI was ≥ 35 kg/m2 (n=8) were found to have a greater decrement in e(MDRD) than those with BMI 300 mcg/mg creatinine), and 6 (15.4%) had microalbuminuria (30–300 mcg/mg creatinine). Conclusions AALKDs experience a substantial incidence of hypertension and a modest drop in eGFR(MDRD) post-donation, and obesity may increase the magnitude of renal decline. Further study is urgently needed to determine the long-term risks of AALKDs. PMID:20029333

  7. Cytokine Profiles during Invasive Nontyphoidal Salmonella Disease Predict Outcome in African Children. (United States)

    Gilchrist, James J; Heath, Jennifer N; Msefula, Chisomo L; Gondwe, Esther N; Naranbhai, Vivek; Mandala, Wilson; MacLennan, Jenny M; Molyneux, Elizabeth M; Graham, Stephen M; Drayson, Mark T; Molyneux, Malcolm E; MacLennan, Calman A


    Nontyphoidal Salmonella is a leading cause of sepsis in African children. Cytokine responses are central to the pathophysiology of sepsis and predict sepsis outcome in other settings. In this study, we investigated cytokine responses to invasive nontyphoidal Salmonella (iNTS) disease in Malawian children. We determined serum concentrations of 48 cytokines with multiplexed immunoassays in Malawian children during acute iNTS disease (n = 111) and in convalescence (n = 77). Principal component analysis and logistic regression were used to identify cytokine signatures of acute iNTS disease. We further investigated whether these responses are altered by HIV coinfection or severe malnutrition and whether cytokine responses predict inpatient mortality. Cytokine changes in acute iNTS disease were associated with two distinct cytokine signatures. The first is characterized by increased concentrations of mediators known to be associated with macrophage function, and the second is characterized by raised pro- and anti-inflammatory cytokines typical of responses reported in sepsis secondary to diverse pathogens. These cytokine responses were largely unaltered by either severe malnutrition or HIV coinfection. Children with fatal disease had a distinctive cytokine profile, characterized by raised mediators known to be associated with neutrophil function. In conclusion, cytokine responses to acute iNTS infection in Malawian children are reflective of both the cytokine storm typical of sepsis secondary to diverse pathogens and the intramacrophage replicative niche of NTS. The cytokine profile predictive of fatal disease supports a key role of neutrophils in the pathogenesis of NTS sepsis.

  8. Acceptability and Preliminary Outcomes of a Peer-Led Depression Prevention Intervention for African American Adolescents and Young Adults in Employment Training Programs (United States)

    Tandon, Darius; Mendelson, Tamar; Mance, GiShawn


    This study examines the acceptability and preliminary outcomes from an open trial of a depression prevention intervention for low-income African American adolescents and young adults in employment training programs. The sample (N=42) consisted of predominately African American adolescents and young adults (mean age=19.1) exhibiting subclinical…

  9. Gastric carcinoma: when is palliative gastrectomy justified?

    Directory of Open Access Journals (Sweden)

    Hubert Scheidbach


    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.

  10. [Palliative care in neurology]. (United States)

    Provinciali, Leandro; Tarquini, Daniela; De Falco, Fabrizio A; Carlini, Giulia; Zappia, Mario; Toni, Danilo


    Palliative care in neurology is characterized by the need of taking into account some distinguishing features which supplement and often differ from the general palliative approach to cancer or to severe organ failures. Such position is emphasized by a new concept of palliative assistance which is not limited to the "end of life" stage, as it was the traditional one, but is applied along the entire course of progressive, life-limiting, and disabling conditions. There are various reasons accounting for a differentiation of palliative care in neurology and for the development of specific expertise; the long duration of the advanced stages of many neurological diseases and the distinguishing features of some clinical problems (cognitive disorders, psychic disorders, etc.), in addition to the deterioration of some general aspects (nutrition, etc.), make the general criteria adopted for cancer, severe respiratory, hepatic or renal failures and heart failure inadequate. The neurological diseases which could benefit from the development of a specific palliative approach are dementia, cerebrovascular diseases, movement disorders, neuromuscular diseases, severe traumatic brain injury, brain cancers and multiple sclerosis, as well as less frequent conditions. The growing literature on palliative care in neurology provides evidence of the neurological community's increasing interest in taking care of the advanced and terminal stages of nervous system diseases, thus encouraging research, training and updating in such direction. This document aims to underline the specific neurological requirements concerning the palliative assistance.

  11. APOL1 genotype and kidney transplantation outcomes from deceased African American donors (United States)

    Freedman, Barry I.; Pastan, Stephen O.; Israni, Ajay K.; Schladt, David; Julian, Bruce A.; Gautreaux, Michael D.; Hauptfeld, Vera; Bray, Robert A.; Gebel, Howard M.; Kirk, Allan D.; Gaston, Robert S.; Rogers, Jeffrey; Farney, Alan C.; Orlando, Giuseppe; Stratta, Robert J.; Mohan, Sumit; Ma, Lijun; Langefeld, Carl D.; Bowden, Donald W.; Hicks, Pamela J.; Palmer, Nicholette D.; Palanisamy, Amudha; Reeves-Daniel, Amber M.; Brown, W. Mark; Divers, Jasmin


    Background Two apolipoprotein L1 gene (APOL1) renal-risk variants in donors and African American (AA) recipient race are associated with worse allograft survival in deceased-donor kidney transplantation (DDKT) from AA donors. To detect other factors impacting allograft survival from deceased AA kidney donors, APOL1 renal-risk variants were genotyped in additional AA kidney donors. Methods APOL1 genotypes were linked to outcomes in 478 newly analyzed DDKTs in the Scientific Registry of Transplant Recipients. Multivariate analyses accounting for recipient age, sex, race, panel reactive antibody level, HLA match, cold ischemia time, donor age, and expanded-criteria donation were performed. These 478 transplantations and 675 DDKTs from a prior report were jointly analyzed. Results Fully-adjusted analyses limited to the new 478 DDKTs replicated shorter renal allograft survival in recipients of APOL1-two-renal-risk-variant kidneys (HR 2.00; p=0.03). Combined analysis of 1153 DDKTs from AA donors revealed donor APOL1 high-risk genotype (HR 2.05; p=3×10−4), older donor age (HR 1.18; p=0.05), and younger recipient age (HR 0.70; p=0.001) adversely impacted allograft survival. Although prolonged allograft survival was seen in many recipients of APOL1-two-renal-risk-variant kidneys, follow-up serum creatinine concentrations were higher than in recipients of zero/one APOL1-renal-risk variant kidneys. A competing risk analysis revealed that APOL1 impacted renal allograft survival, but not recipient survival. Interactions between donor age and APOL1 genotype on renal allograft survival were non-significant. Conclusions Shorter renal allograft survival is reproducibly observed after DDKT from APOL1-two-renal-risk-variant donors. Younger recipient age and older donor age have independent adverse effects on renal allograft survival. PMID:26566060

  12. Birth outcomes in South African women receiving highly active antiretroviral therapy: a retrospective observational study

    Directory of Open Access Journals (Sweden)

    van der Merwe Karin


    Full Text Available Abstract Background Use of highly active antiretroviral therapy (HAART, a triple-drug combination, in HIV-infected pregnant women markedly reduces mother to child transmission of HIV and decreases maternal morbidity. However, there remains uncertainty about the effects of in utero exposure to HAART on foetal development. Methods Our objectives were to investigate whether in utero exposure to HAART is associated with low birth weight and/or preterm birth in a population of South African women with advanced HIV disease. A retrospective observational study was performed on women with CD4 counts ≤250 cells/mm3 attending antenatal antiretroviral clinics in Johannesburg between October 2004 and March 2007. Low birth weight ( Results Among HAART-unexposed infants, 27% (60/224 were low birth weight compared with 23% (90/388 of early HAART-exposed (exposed 3 increase, 95% CI 0.45-0.71, p 3 increase, 95% CI 0.55-0.85, p = 0.001. HAART exposure was associated with an increased preterm birth rate (15%, or 138 of 946, versus 5%, or seven of 147, in unexposed infants, p = 0.001, with early nevirapine and efavirenz-based regimens having the strongest associations with preterm birth (AOR 5.4, 95% CI 2.1-13.7, p Conclusions In this immunocompromised cohort, in utero HAART exposure was not associated with low birth weight. An association between NNRTI-based HAART and preterm birth was detected, but residual confounding is plausible. More advanced immunosuppression was a risk factor for low birth weight and preterm birth, highlighting the importance of earlier HAART initiation in women to optimize maternal health and improve infant outcomes.

  13. Future of palliative medicine

    Directory of Open Access Journals (Sweden)

    Sushma Bhatnagar


    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.

  14. Community-based fortified dietary intervention improved health outcomes among low-income African-American women. (United States)

    Salihu, Hamisu M; Adegoke, Korede K; Das, Rachita; Wilson, Ronee E; Mazza, Jessica; Okoh, Jennifer O; Naik, Eknath; Berry, Estrellita Lo


    Poor dietary exposure disproportionately affects African-Americans and contributes to the persistence of disparities in health outcomes. In this study, we hypothesized that fortified dietary intervention (FDI) will improve measured dietary and related health outcomes and will be acceptable among low-income African-American women living in Tampa, FL. These objectives were tested using a prospective experimental study using pretest and posttest design with a control group, using a community-based participatory research approach. The intervention (FDI) was designed by the community through structural modification of a preexisting, diet-based program by the addition of a physical and mental health component. Paired sample t tests were used to examine preintervention and postintervention changes in study outcomes. A total of 49 women participated in the study, 26 in the FDI group and 23 controls. Two weeks postintervention, there were significant improvements in waist circumference and health-related quality of life related to physical health (PFDI group. Among overweight/obese women, improvement in health-related quality of life related to physical health, a significant decrease in depressive score, and a reduction in waist circumference were noted. In the control group, a decrease in waist circumference was observed. Implementation of the FDI through a community-based participatory research approach is feasible and effective among low-income African-American women in general and overweight/obese women in particular. Social reengineering of a nutritional intervention coupled with community-based approach will enhance health outcomes of low-income women.

  15. Pediatric nurses' attitudes toward hospice and pediatric palliative care. (United States)

    Knapp, Caprice A; Madden, Vanessa; Wang, Hua; Kassing, Kristin; Curtis, Charlotte; Sloyer, Phyllis; Shenkman, Elizabeth A


    Several studies have investigated nurses' attitudes toward hospice and palliative care for adults, yet little information exists about pediatrics. Assessing pediatric nurses' attitudes is especially important in Florida, where a publicly funded pediatric palliative care program operates in eight cities across the State. The aims of this study were 1) to assess the attitudes toward hospice and palliative care, and 2) to examine the associations between sociodemographic and nursing care factors and nurses' attitudes toward hospice and palliative care. A cross-sectional research design using online and mail-in survey data was used to address the study aims. Surveys were conducted with 279 pediatric nurses across Florida. Bivariate results showed there were significant differences between the attitudes of pediatric nurses employed in a city with a pediatric palliative care program versus those not employed in a program site (p = 0.05). Multivariate analyses also showed that being employed in a program site increased attitudinal scores toward hospice and pediatric palliative care by 0.6 points. Beyond being employed in an area city where a pediatric palliative care program operates, results also suggest that having prior training in palliative care could alter nurses' attitudes, which might subsequently lead to increased referrals and improved outcomes for children and families.

  16. The Chicago Parent Program: comparing 1-year outcomes for African American and Latino parents of young children. (United States)

    Breitenstein, Susan M; Gross, Deborah; Fogg, Louis; Ridge, Alison; Garvey, Christine; Julion, Wrenetha; Tucker, Sharon


    Data were merged from two prevention randomized trials testing 1-year outcomes of a parenting skills program, the Chicago Parent Program (CPP) and comparing its effects for African-American (n = 291) versus Latino (n = 213) parents and their preschool children. Compared to controls, intervention parents had improved self-efficacy, used less corporal punishment and more consistent discipline, and demonstrated more positive parenting. Intervention children had greater reductions in behavior problems based on parent-report, teacher-report, and observation. Although improvements from the CPP were evident for parents in both racial/ethnic groups, Latino parents reported greater improvements in their children's behavior and in parenting self-efficacy but exhibited greater decreases in praise. Findings support the efficacy of the CPP for African American and Latino parents and young children from low-income urban communities.

  17. The Response, Outcome and Toxicity of Aggressive Palliative Thoracic Radiotherapy for Metastatic Non-Small Cell Lung Cancer Patients with Controlled Extrathoracic Diseases.

    Directory of Open Access Journals (Sweden)

    Yun Chiang

    Full Text Available For metastatic non-small cell lung cancer (NSCLC patients with controlled extrathoracic disease after systemic treatment, stable or progressive primary lung lesions may cause respiratory symptoms and increase comorbidities. In the present study, we sought to investigate whether aggressive palliative thoracic radiotherapy (RT can enhance local control and improve the survival for this subgroup of patients.Between March 2006 and December 2014, 56 patients with metastatic NSCLC who had responsive or stable extrathoracic diseases after chemotherapy and/or molecular targets, and received thoracic RT for stable and progressive primary lung lesions were included. RT with a median dose of 55 Gy (range, 40-62 Gy was administered in 1.8-2.5 Gy fractions to primary lung tumor and regional mediastinal lymph nodes using modern RT technique. Overall survival (OS from diagnosis, and locoregional progression-free survival (LRPFS, and survival calculated from radiotherapy (OS-RT were estimated using the Kaplan-Meier method.There were 37 men and 19 women with a median age of 60 years at diagnosis. The median interval from the diagnosis of metastatic disease to thoracic RT was 8 months. Following thoracic RT, 26 patients (46% achieved complete or partial response (overall response rate, ORR. Patients with squamous cell carcinoma or poorly-differentiated carcinoma had a higher ORR than those with adenocarcinoma (63% vs. 34%, P = 0.034. EGFR mutations was closely associated with a better ORR (45% vs. 29%, P = 0.284. At a median follow-up time of 44 months, the median OS, LRPFS after RT, and OS-RT were 50 months, 15 months, and 18 months.Radical palliative throractic RT is safe and might be beneficial for primary lung lesions of metastatic NSCLC patients with controlled extrathoracic diseases.

  18. Parental Monitoring, Association with Externalized Behavior, and Academic Outcomes in Urban African-American Youth: A Moderated Mediation Analysis. (United States)

    Lopez-Tamayo, Roberto; LaVome Robinson, W; Lambert, Sharon F; Jason, Leonard A; Ialongo, Nicholas S


    African-American adolescents exposed to neighborhood disadvantage are at increased risk for engaging in problem behavior and academic underachievement. It is critical to identify the mechanisms that reduce problem behavior and promote better academic outcomes in this population. Based on social disorganization and socioecological theories, the current prospective study examined pathways from parental monitoring to academic outcomes via externalizing behavior at different levels of neighborhood disadvantage. A moderated mediation model employing maximum likelihood was conducted on 339 African-American students from 9th to 11th grade (49.3% females) with a mean age of 14.8 years (SD ± 0.35). The results indicated that parental monitoring predicted low externalizing behavior, and low externalizing behavior predicted better academic outcomes after controlling for externalizing behavior in 9th grade, intervention status, and gender. Mediation was supported, as the index of mediation was significant. Conversely, neighborhood disadvantage did not moderate the path from parental monitoring to externalizing behavior. Implications for intervention at both community and individual levels and study limitations are discussed.

  19. Center to Advance Palliative Care (United States)

    ... Catalogue Membership Brochure Join CAPC Central Registry National Palliative Care Registry™ Enter your data to improve performance, prove ... Members Only) Identifying the Right Patients for Specialty Palliative Care Webinar Amy Kelley, MD and Arta Bakshandeh, DO, ...

  20. Engagement and outcomes for a computerised cognitive–behavioural therapy intervention for anxiety and depression in African Americans (United States)

    Gibbs, Patrice; Belnap, Bea Herbeck; Karp, Jordan F.; Abebe, Kaleab K.; Rollman, Bruce L.


    Background Computerised cognitive–behavioural therapy (CCBT) helps improve mental health outcomes in White populations. However, no studies have examined whether CCBT is acceptable and beneficial for African Americans. Aims We studied differences in CCBT use and self-reported change in depression and anxiety symptoms among 91 African Americans and 499 White primary care patients aged 18–75, enrolled in a randomised clinical trial of collaborative care embedded with an online treatment for depression and anxiety. Method Patients with moderate levels of mood and/or anxiety symptoms (PHQ-9 or GAD-7≥10) were randomised to receive either care-manager-guided access to the proven-effective Beating the Blues® CCBT programme or usual care from their primary care doctor. Results Compared with White participants, African Americans were less likely to start the CCBT programme (P=0.01), and those who did completed fewer sessions and were less likely to complete the full programme (P=0.03). Despite lower engagement, however, African Americans who started the CCBT programme experienced a greater decrease in self-reported depressive symptoms (estimated 8-session change: −6.6 v. −5.5; P=0.06) and similar decrease in anxiety symptoms (−5.3 v. −5.6; P=0.80) compared with White participants. Conclusions CCBT may be an efficient and scalable first-step to improving minority mental health and reducing disparities in access to evidence-based healthcare. Declaration of interest None. Copyright and usage © The Royal College of Psychiatrists 2017. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) license. PMID:28058109

  1. Suburban migration and the birth outcome of Chicago-born white and African-American women: the merit of the healthy migrant theory? (United States)

    Collins, James W; Rankin, Kristin M; Janowiak, Christine M


    The healthy migrant theory posits that women who migrate before pregnancy are intrinsically healthier and therefore have better birth outcomes than those who don't move. Objective. To determine whether migration to the suburbs is associated with lower rates of preterm (unity. Neighborhood income underlies the protective association of suburban migration and birth outcome among Chicago-born White and African-American mothers. These findings do not support the healthy migrant hypothesis of reproductive outcome.

  2. Palliative care in Enugu, Nigeria: Challenges to a new practice

    Directory of Open Access Journals (Sweden)

    Tonia C Onyeka


    Full Text Available Everyone, young and old, male and female, rich and poor, should have access to excellent care during the course of a serious illness and at the end of life. Therefore, a denial of such care becomes an infringement of the individual′s human rights. Because of the efforts of pioneers in this field of Medicine in Africa and beyond, both living and immortalized, we can now say that palliative care in the African context is affordable and achievable. In this article, some of the challenges faced in setting up and running a new palliative care practice in an emerging and developing economy are examined.

  3. Profiles of Racial Socialization among African American Parents: Correlates, Context, and Outcome (United States)

    Caughy, Margaret O'Brien; Nettles, Saundra Murray; Lima, Julie


    Self report and observational data on racial socialization practices in a sample of 218 African American parents of young children were used to determine whether or not parents could be characterized in terms of their pattern of racial socialization practices. Parents fell into four groups: silence about race, emphasis on cultural socialization,…

  4. Civic Engagement in Relation to Outcome Expectations among African American Young Adults (United States)

    Chung, He Len; Probert, Stephanie


    The present study examined civic engagement--volunteering and political activism--among 129 African American young adults from an urban community. The proposed model considered factors that motivate young adults to participate in civic activities as well as barriers that might inhibit involvement. Drawing upon social cognitive theory, this study…

  5. Linking Home-School Dissonance to School-Based Outcomes for African American High School Students (United States)

    Tyler, Kenneth; Brown-Wright, Lynda; Stevens-Watkins, Danelle; Thomas, Deneia; Stevens, Ruby; Roan-Belle, Clarissa; Gadson, Nadia; Smith, La Toya


    The current study examined associations between home-school dissonance and several academic and psychological variables among 239 African American high school students. Regression analyses revealed that home-school dissonance significantly predicted multiple academic and psychological variables, including academic cheating, disruptive classroom…

  6. Influence of Perceived Contextual Stress on Self-Esteem and Academic Outcomes in African American Adolescents. (United States)

    Cunningham, Michael; Hurley, Megan; Foney, Dana; Hayes, DeMarquis


    Studied factors that influence academic success among 84 high-achieving African American students exposed to many stressful life events often associated with life in urban neighborhoods. Results show that adolescent-perceived hassles were indications of parental monitoring, and parental monitoring was positively related to self-esteem. Discusses…

  7. Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations. (United States)

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


    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.

  8. Integrating palliative care into the trajectory of cancer care. (United States)

    Hui, David; Bruera, Eduardo


    Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, illness understanding, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We also discuss how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available.

  9. Gender matters, too: the influences of school racial discrimination and racial identity on academic engagement outcomes among African American adolescents. (United States)

    Chavous, Tabbye M; Rivas-Drake, Deborah; Smalls, Ciara; Griffin, Tiffany; Cogburn, Courtney


    The authors examined relationships among racial identity, school-based racial discrimination experiences, and academic engagement outcomes for adolescent boys and girls in Grades 8 and 11 (n = 204 boys and n = 206 girls). The authors found gender differences in peer and classroom discrimination and in the impact of earlier and later discrimination experiences on academic outcomes. Racial centrality related positively to school performance and school importance attitudes for boys. Also, centrality moderated the relationship between discrimination and academic outcomes in ways that differed across gender. For boys, higher racial centrality related to diminished risk for lower school importance attitudes and grades from experiencing classroom discrimination relative to boys lower in centrality, and girls with higher centrality were protected against the negative impact of peer discrimination on school importance and academic self-concept. However, among lower race-central girls, peer discrimination related positively to academic self-concept. Finally, socioeconomic background moderated the relationship of discrimination with academic outcomes differently for girls and boys. The authors discuss the need to consider interactions of individual- and contextual-level factors in better understanding African American youths' academic and social development.

  10. Self-reported outcomes of aural rehabilitation for adult hearing aid users in a developing South African context

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    Elaine Pienaar


    Full Text Available Hearing impairment has far reaching consequences for affected individuals, in terms of quality of life indicators. In a developing South African context the hearing impaired population is faced with limited aural rehabilitation services. This study evaluated self-reported outcomes of aural rehabilitation in a group of adults in the public healthcare sector with a standardized outcomes measurement tool (IOI-HA. Sixty-one respondents participated (44% males; 56% females, with a mean age of 69.7 years. Results revealed that the majority of respondents experienced favourable outcomes in all domains of the inventory comprising of: daily use of hearing aids, benefits provided by hearing aids, residual activity limitation, satisfaction with hearing aids, residual participation restriction, impact of hearing difficulties on others, and changes in quality of life. Statistically significant relationships were obtained between the daily use of hearing aids, the degree of hearing loss, and the type of hearing aids fitted, as well as the benefits received from hearing aids in difficult listening environments (p < 0.05. Despite challenges of developing contexts, the mean scores distribution compared positively to similar reports from developed countries. Outcomes of improved quality of life emphasize the importance of providing affordable hearing aids and services to all hearing impaired individuals in South Africa.

  11. Inter-Professional Palliative Care

    DEFF Research Database (Denmark)

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


    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....

  12. Palliative care and spirituality

    Directory of Open Access Journals (Sweden)

    Narayanasamy Aru


    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.

  13. Role of Mitochondrial Inheritance on Prostate Cancer Outcome in African American Men (United States)


    DNA sequencing, Prostate Cancer, Cybrid Cells , African Americans 16. SECURITY CLASSIFICATION OF: 17. LIMITATION OF ABSTRACT 18. NUMBER OF PAGES 19a...NAME OF RESPONSIBLE PERSON USAMRMC a. REPORT Unclassified b. ABSTRACT Unclassified c. THIS PAGE Unclassified Unclassified 19b. TELEPHONE NUMBER ...genome as well including the coding regions of for a number of components of the electron transport chain. Similar data in Figure 3B shows the

  14. Palliation:Hilar cholangiocarcinoma

    Institute of Scientific and Technical Information of China (English)

    Mahesh; Kr; Goenka; Usha; Goenka


    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 bili-ary drainage. There is no consensus as to whether it is necessary to place multiple stents within advanced hi-lar 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 asegment Ⅲ bypass if, during a laparotomy for resec-tion, the tumor is found to be unresectable. Photody-namic therapy and, more recently, radiofrequency abla-tion 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 bili-ary involvement(Bismuth class) and the availability of local expertise.

  15. A dual-process model of diversity outcomes: The case South African police service in the Pretoria area

    Directory of Open Access Journals (Sweden)

    Leon T.B. Jackson


    Full Text Available Orientation: The study addresses the question of how employees of the South African Police Service (SAPS cope with intercultural relations in an increasingly diverse organisation.Research purpose: A dual-process model of diversity outcomes was tested in which a distinction is made between a positive (work-related stream that links positive diversity conditions through active coping to work outcomes and a relatively independent health related stream of negative antecedents, mediating passive coping skills and ill-health related outcomes.Motivation for the study: To test the viability of a dual-process model to understand diversity outcomes in the workplace.Research design, approach and methods: A convenience sample (n= 158 was recruited from members of the SAPS in Gauteng, using a cross-sectional design. Instruments used in previous acculturation research were adapted to measure contextual factors, coping and diversity outcomes.Main findings: A very good fit for the proposed hypothetical model was found. Approach coping partially mediated the relationship between positive acculturation conditions and the subjective experience of work success whereas avoidance coping fully mediated the relationship between discrimination, and ill-health symptoms are related to ill-health symptoms.Practical/managerial implications: Mainstream-facilitating conditions and discrimination influence individual coping styles, which in turn impact on ill-health and the subjective experience of work success. In addition, ill-health also impacts negatively on work-success experiences amongst the sampled SAPS members. It would thus make sense for the SAPS to sanction discrimination.Contribution/value added: A variation of the mediated dual-process model for diversity (Jackson & Van de Vijver, in press, using coping strategies as mediators was supported. The model adds new insights in diversity in organisations.

  16. The Relationship among Support, Ethnic Identity, Career Decision Self-Efficacy, and Outcome Expectations in African American High School Students: Applying Social Cognitive Career Theory (United States)

    Gushue, George V.; Whitson, Melissa L.


    This study examines the influence of two potential sources of strength (i.e., ethnic identity and parent/teacher support) on the cognitive variables of career decision self-efficacy and outcome expectations in a sample of 104 African American ninth-grade students. The results indicate that parental support is positively related to career decision…

  17. Generalist palliative care in hospital

    DEFF Research Database (Denmark)

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


    Background: It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-orientedtreatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactionsthat occur is sparse. Aim......: a quantitative study, in whichthree independent datasets were triangulated to study the organisation and evaluation of generalist palliative care, and a qualitative,ethnographic study exploring the culture of generalist palliative nursing care in medical departments. Setting/participants: A Danish regional......: To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, ifpossible, to suggest workable solutions for the provision of generalist palliative care. Design: A convergent parallel mixed-methods design was chosen using two independent studies...

  18. Custom ocular prosthesis: A palliative approach

    Directory of Open Access Journals (Sweden)

    Prachi Thakkar


    Full Text Available The goal of palliative care is the achievement of the best quality of life for patients and their families. Eyes are generally the first features of the face to be noticed. Loss of an eye is a traumatic event which has a crippling effect on the psychology of the patient. Several ocular and orbital disorders require surgical intervention that may result in ocular defects. An ocular prosthesis is fabricated to restore the structure, function, and cosmetics of the defects created by such conditions. Although an implant eye prosthesis has a superior outcome, due to economic factors it may not be a feasible option for all patients. Therefore, a custom-made ocular prosthesis is a good alternative. This case report presents a palliative treatment for a patient with an enucleated eye by fabricating a custom ocular prosthesis which improved his psychological, physical, social, functional, emotional and spiritual needs.

  19. [Palliative psychosomatic medicine]. (United States)

    Rosin, U


    Psychotherapeutic medicine, the area of medicinal specialisation dealing with the foundations of psychosomatic medicine, so far dealt mostly with diagnosis and therapy of acute diseases. The course of illness in patients with bio-psycho-social disorders however ist most often chronic. Sigmund Freud the founder of scientific psychotherapy himself was a patient in palliative care for 26 years and underwent over 30 surgical procedures to treat his carcinoma of the palate and jaw. Some goals and psychotherapeutic strategies of intervention that can be used in palliative psychosomatic medicine are laid out. This important field has in itself so far not reached a wide spread recognition and there are hardly any theoretical concepts or empirical validation to be found.

  20. "It Was Definitely Very Different": An evaluation of palliative care teaching to medical students using a mixed methods approach. (United States)

    Brand, Alison H; Harrison, Amanda; Kumar, Koshila


    Given our ageing population and the increase in chronic disease, palliative care will become an increasingly important part of doctors' workloads, with implications for palliative care education. This study used a mixed methods strategy to evaluate second-year medical students' learning outcomes and experiences within a palliative care education program. Analysis of pre- and post-test scores showed a significant improvement in students' attitudinal scores, but no change in knowledge as measured by multiple-choice questions. Analysis of qualitative data revealed that students' learning experience was marked by a lack of clear learning objectives and experiential learning opportunities. Students also reported divergent reactions to death and dying and noted that palliative care was different from other areas of clinical medicine. This study revealed that palliative care teaching results in improved attitudes toward palliative care, reflecting the holistic and patient-focused nature of the palliative care curriculum.

  1. Contrasting predictors of poor antiretroviral therapy outcomes in two South African HIV programmes: a cohort study

    Directory of Open Access Journals (Sweden)

    Hamilton Robin


    Full Text Available Abstract Background Many national antiretroviral therapy (ART programmes encourage providers to identify and address baseline factors associated with poor treatment outcomes, including modifiable adherence-related behaviours, before initiating ART. However, evidence on such predictors is scarce, and providers judgement may often be inaccurate. To help address this evidence gap, this observational cohort study examined baseline factors potentially predictive of poor treatment outcomes in two ART programmes in South Africa, with a particular focus on determinants of adherence. Methods Treatment-naïve patients starting ART were enrolled from a community and a workplace ART programme. Potential baseline predictors associated with poor treatment outcomes (defined as viral load > 400 copies/ml or having discontinued treatment by six months were assessed using logistic regression. Exposure variables were organised for regression analysis using a hierarchical framework. Results 38/227 (17% of participants in the community had poor treatment outcomes compared to 47/117 (40% in the workplace. In the community, predictors of worse outcomes included: drinking more than 20 units of alcohol per week, having no prior experience of chronic medications, and consulting a traditional healer in the past year (adjusted odds ratio [aOR] 15.36, 95% CI 3.22-73.27; aOR 2.30, 95%CI 1.00-5.30; aOR 2.27, 95% CI 1.00-5.19 respectively. Being male and knowing someone on ART were associated with better outcomes (aOR 0.25, 95%CI 0.09-0.74; aOR 0.44, 95%CI 0.19-1.01 respectively. In the workplace, predictors of poor treatment outcomes included being uncertain about the health effects of ART and a traditional healer's ability to treat HIV (aOR 7.53, 95%CI 2.02-27.98; aOR 4.40, 95%CI 1.41-13.75 respectively. Longer pre-ART waiting time (2-12 weeks compared to Conclusion Baseline predictors of poor treatment outcomes were largely unique to each programme, likely reflecting

  2. Logging or conservation concession: Exploring conservation and development outcomes in Dzanga-Sangha, Central African Republic

    Directory of Open Access Journals (Sweden)

    Marieke Sandker


    Full Text Available The Dzanga-Sangha landscape consists of a national park surrounded by production forest. It is subject to an integrated conservation and development project (ICDP. In collaboration with the ICDP personnel, a participatory model was constructed to explore wildlife conservation and industrial logging scenarios for the landscape. Three management options for the landscape′s production forest were modelled: (I ′predatory logging′, exploitation by a logging company characterised by a lack of long-term plans for staying in the landscape, (II sustainable exploitation by a certified logging company, and (III conservation concession with no commercial timber harvesting. The simulation outcomes indicate the extreme difficulties to achieve progress on either conservation or development scenarios. Both logging scenarios give best outcomes for development of the local population. However, the depletion of bushmeat under the predatory logging scenario negatively impacts the population, especially the BaAka pygmy minority who most strongly depend on hunting for their income. The model suggests that conservation and development outcomes are largely determined by the level of economic activity, both inside and outside the landscape. Large investments in the formal sector in the landscape without any measures for protecting wildlife (Scenario I leads to some species going nearly extinct, while investments in the formal sector including conservation measures (Scenario II gives best outcomes for maintaining wildlife populations. The conservation concession at simulated investment levels does not reduce poverty, defined here in terms of monetary income. Neither does it seem capable of maintaining wildlife populations since the landscape is already filled with settlers lacking economic opportunities as alternatives to poaching.

  3. Organization position statements and the stance of "studied neutrality" on euthanasia in palliative care. (United States)

    Johnstone, Megan-Jane


    In recent years, palliative care and related organizations have increasingly adopted a stance of "studied neutrality" on the question of whether euthanasia should be legalized as a bona fide medical regimen in palliative care contexts. This stance, however, has attracted criticism from both opponents and proponents of euthanasia. Pro-euthanasia activists see the stance as an official position of indecision that is fundamentally disrespectful of a patient's right to "choose death" when life has become unbearable. Some palliative care constituents, in turn, are opposed to the stance, contending that it reflects an attitude of "going soft" on euthanasia and as weakening the political resistance that has hitherto been successful in preventing euthanasia from becoming more widely legalized. In this article, attention is given to examining critically the notion and possible unintended consequences of adopting a stance of studied neutrality on euthanasia in palliative care. It is argued that although palliative care and related organizations have an obvious stake in the outcome of the euthanasia debate, it is neither unreasonable nor inconsistent for such organizations to be unwilling to take a definitive stance on the issue. It is further contended that, given the long-standing tenets of palliative care, palliative care organizations have both a right and a responsibility to defend the integrity of the principles and practice of palliative care and to resist demands for euthanasia to be positioned either as an integral part or logical extension of palliative care.

  4. Role of palliative radiotherapy in brain metastases

    Directory of Open Access Journals (Sweden)

    Ramesh S Bilimagga


    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.

  5. Renal palliative care. (United States)

    Cohen, Lewis M; Moss, Alvin H; Weisbord, Steven D; Germain, Michael J


    Patients with chronic kidney disease have a shortened life expectancy and carry a high symptom burden. Clinicians need sophisticated expertise in pain and symptom management and skills in communication to meet the many needs of this population. This article reviews the literature and discusses prognosis, ethical and legal considerations, symptoms, treatment, and end-of-life issues. The field of nephrology is shifting from an exclusive focus on increasing survival to one that provides greater attention to quality of life. There is an opportunity to integrate many of the advances of palliative medicine into the comprehensive treatment of these patients.

  6. Evaluation of an HIV prevention intervention for African Americans and Hispanics: findings from the VOICES/VOCES Community-based Organization Behavioral Outcomes Project. (United States)

    Fisher, Holly H; Patel-Larson, A; Green, K; Shapatava, E; Uhl, G; Kalayil, E J; Moore, A; Williams, W; Chen, B


    There is limited knowledge about whether the delivery of evidence-based, HIV prevention interventions in 'real world' settings will produce outcomes similar to efficacy trial outcomes. In this study, we describe longitudinal changes in sexual risk outcomes among African American and Hispanic participants in the Video Opportunities for Innovative Condom Education and Safer Sex (VOICES/VOCES) program at four CDC-funded agencies. VOICES/VOCES was delivered to 922 high-risk individuals in a variety of community settings such as substance abuse treatment centers, housing complex centers, private residences, shelters, clinics, and colleges. Significant risk reductions were consistently observed at 30- and 120-days post-intervention for all outcome measures (e.g., unprotected sex, self-reported STD infection). Risk reductions were strongest for African American participants, although Hispanic participants also reported reducing their risky behaviors. These results suggest that, over a decade after the first diffusion of VOICES/VOCES across the U.S. by CDC, this intervention remains an effective tool for reducing HIV risk behaviors among high-risk African American and Hispanic individuals.

  7. The web site of the center to advance palliative care. (United States)

    Gavrin, Jonathan R


    The web site of the Center to Advance Palliative Care is reviewed. This is an excellent resource containing resources that address financial tutorials and customizable Excel worksheets, development and marketing tools, particularly the decision checklists, satisfaction tools, the information on tracking and reporting outcomes, bereavement tools and a press kit.

  8. Integrating Palliative Care into Primary Care. (United States)

    Gorman, Rosemary D


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

  9. Culture, palliative care and multiculturalism. (United States)

    Nyatanga, Brian


    The frequently asked question, 'Why do minority ethnic groups not access palliative care?' needs closer analysis. This article sets out to revisit the context and principles of palliative care and discuss why palliative care services are not accessed equally by all cultural groups in western, particularly UK, society. The conceptual basis of culture, together with cultural diversity, will be discussed to foster greater understanding of multiculturalism with a view to offering recommendations for the provision of culturally sensitive palliative care. These recommendations will seek to be challenging but realistic, both for practitioners providing such care and for educationalist disseminating 'knowledge'. I will highlight what I believe are the challenges of providing palliative care that is acceptable to minority ethnic groups based on personal experience and literature, and emphasize that these challenges should be seen as potential opportunities. It is hoped that this article will set a platform for honest and open discussion about the way forward in providing culturally sensitive palliative care for minority ethic groups. I will pose a challenging call to all members of minority ethnic groups to adopt a more proactive approach to their own care by preparing themselves to be in an influential position in palliative care provision through academic and clinical endeavours.

  10. Diet and Nutrition in Cancer Survivorship and Palliative Care

    Directory of Open Access Journals (Sweden)

    Anthony J. Bazzan


    Full Text Available The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health outcomes and perhaps even positively affect cancer recurrence and progression. In this regard, there has been a recent emphasis in the literature on nutrition and cancer as an important factor in both quality of life and in the pathophysiology of cancer. Hence, the primary purpose of this paper is to review the current data on diet and nutrition as it pertains to a wide range of cancer patients in the palliative care setting.

  11. Relationship of left ventricular hypertrophy and diastolic function with cardiovascular and renal outcomes in African Americans with hypertensive chronic kidney disease. (United States)

    Peterson, Gail E; de Backer, Tine; Contreras, Gabriel; Wang, Xuelei; Kendrick, Cynthia; Greene, Tom; Appel, Lawrence J; Randall, Otelio S; Lea, Janice; Smogorzewski, Miroslaw; Vagaonescu, Tudor; Phillips, Robert A


    African Americans with hypertension are at high risk for adverse outcomes from cardiovascular and renal disease. Patients with stage 3 or greater chronic kidney disease have a high prevalence of left ventricular (LV) hypertrophy and diastolic dysfunction. Our goal was to study prospectively the relationships of LV mass and diastolic function with subsequent cardiovascular and renal outcomes in the African American Study of Kidney Disease and Hypertension cohort study. Of 691 patients enrolled in the cohort, 578 had interpretable echocardiograms and complete relevant clinical data. Exposures were LV hypertrophy and diastolic parameters. Outcomes were cardiovascular events requiring hospitalization or causing death; a renal composite outcome of doubling of serum creatinine or end-stage renal disease (censoring death); and heart failure. We found strong independent relationships between LV hypertrophy and subsequent cardiovascular (hazard ratio, 1.16; 95% confidence interval, 1.05-1.27) events, but not renal outcomes. After adjustment for LV mass and clinical variables, lower systolic tissue Doppler velocities and diastolic parameters reflecting a less compliant LV (shorter deceleration time and abnormal E/A ratio) were significantly (Pchronic kidney disease. These echocardiographic risk factors may help identify high-risk patients with chronic kidney disease for aggressive therapeutic intervention.

  12. The Relation of Maternal Birth Weight to African-American and Non-Latina White Twin Pregnancy Outcomes: A Population-Based Study. (United States)

    McAndrew, Sarah; Chihara, Izumi; Rankin, Kristin M; Collins, James W


    Objectives The authors investigated the association between maternal birth weight and adverse birth outcome as measured by rates of low birth weight (<2500 g, LBW), preterm birth (<37 weeks, PTB), and small for gestational age (weight <10th percentile for gestational age, SGA) among African American and White twin pregnancies. Methods Stratified and multivariable regression analyses were performed on the Illinois transgenerational dataset of non-Latina African American and non-Latina White twin pairs (born 1989-1991) and their mothers (born 1956-1976). Results Former LBW (n = 104) and non-LBW (n = 742) African American mothers had LBW rates in both twins of 76 and 56 %, respectively; RR (95 % CI) = 1.4 (1.2-1.6). Former LBW (n = 105) and non-LBW (n = 2136) White mothers had LBW rates in both twins of 41 and 34 %, respectively; RR = 1.2 (0.9-1.5). In multivariable regression models, the adjusted (controlling for maternal age, education, marital status, parity, prenatal care usage, and cigarette smoking) RR of LBW in both twins among former LBW (compared to non-LBW) African American and White mothers equaled 1.4 (1.2-1.6) and 1.2 (0.9-1.5), respectively. Maternal LBW was associated with a modestly increased risk of PTB but not SGA among African American twin pregnancies: adjusted RR = 1.3 (1.1-1.4) and 1.1 (0.8-1.5), respectively. Conclusions In African American twin pregnancies, maternal LBW is a risk factor for LBW in both twins. Further research is needed to determine whether a similar generational association occurs among non-Latina White twin pregnancies.

  13. Experimental infection of pregnant sows with African swine fever (ASFV Georgia 2007): Clinical outcome, pathogenesis and vertical transmission

    DEFF Research Database (Denmark)

    Lohse, Louise; Strandbygaard, Bertel; Nielsen, Jens;

    African swine fever virus (ASFV) causes a severe hemorrhagic fever in domestic pigs. The disease was introduced from the African continent to Georgia in 2007 and has since spread throughout the Caucasus and the Russian Federation. ASF is now established in Eastern Europe and outbreaks have occurred...

  14. [Multiprofessional cooperation in palliative care]. (United States)

    Falckenberg, Maja


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

  15. Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial

    Directory of Open Access Journals (Sweden)

    Thoonsen Bregje


    Full Text Available Abstract Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815

  16. Actor interfaces and practices of power in a community health worker programme: a South African study of unintended policy outcomes. (United States)

    Lehmann, Uta; Gilson, Lucy


    This paper makes a contribution to a much-neglected aspect of policy analysis: the practice of power in implementation. Practices of power are at the heart of every policy process, yet are rarely explicitly explored in the health policy literature. This paper provides a detailed study of micro-practices of power by those at the frontline of service delivery in the implementation of a national community health worker policy in one rural South African sub-district. The paper is based on a small-scale qualitative study which collected data through observations, interviews and focus group discussions with health services and facility managers, community health workers and community members. Practices of power were analysed using VeneKlasen and Miller's categorization of multiple dimensions of power, as power over, power with, power to and power within. Furthermore, the concept of 'actor interface analysis' allowed exploration of different actors' experience, interests and their specific location in the landscape of local health system governance. The study revealed that almost all policy actors exercised some form of power, from authoritative power, derived from hierarchy and budget control, to the discretionary power of those working at lower levels to withhold labour or organize in-service training. Each of these practices of power had their rationale in different actors' efforts to make the intervention 'fit' their understandings of local reality. While each had a limited impact on policy outcomes, their cumulative effect produced a significant thinning down of the policy's intent. However, discretionary power was not always used to undermine policy. One manager's use of discretionary power in fact led to a partial reconstruction of the original policy intent. The paper concludes that understanding and being responsive to the complexity of local realities, interests and contexts and the multi-layered practices of power may allow managers to adopt more appropriate

  17. African American community members sustain favorable blood pressure outcomes through 12-month telephone motivational interviewing (MI) maintenance (United States)

    Community approaches offer promise for addressing disparities experienced by African Americans in hypertension prevalence, treatment, and control. HUB City Steps, a community-based participatory research lifestyle intervention, tracked participants through a 12-month MI maintenance phase following a...

  18. Gastric Outlet Obstruction Palliation: A Novel Stent-Based Solution

    Directory of Open Access Journals (Sweden)

    Natasha M. Rueth


    Full Text Available Gastric outlet obstruction (GOO after esophagectomy is a morbid outcome and significantly hinders quality of life for end-stage esophageal cancer patients. In the pre-stent era, palliation consisted of chemotherapy, radiation, tumor ablation, or stricture dilation. In the current era, palliative stenting has emerged as an additional tool; however, migration and tumor ingrowth are ongoing challenges. To mitigate these challenges, we developed a novel, hybrid, stent-based approach for the palliative management of GOO. We present a patient with esophageal cancer diagnosed with recurrent, metastatic disease 1 year after esophagectomy. She developed dehydration and intractable emesis, which significantly interfered with her quality of life. For palliation, we dilated the stenosis and proceeded with our stent-based solution. Using a combined endoscopic and fluoroscopic approach, we placed a 12-mm silicone salivary bypass tube across the pylorus, where it kinked slightly because of local tumor biology. To bridge this defect and ensure luminal patency, we placed a nitinol tracheobronchial stent through the silicone stent. Clinically, the patient had immediate relief from her pre-operative symptoms and was discharged home on a liquid diet. In conclusion, GOO and malignant dysphagia after esophagectomy are significant challenges for patients with end-stage disease. Palliative stenting is a viable option, but migration and tumor ingrowth are common complications. The hybrid approach presented here provides a unique solution to these potential pitfalls. The flared silicone tube minimized the chance of migration and impaired tumor ingrowth. The nitinol stent aided with patency and overcame the challenges of the soft tube. This novel strategy achieved palliation, describing another endoscopic option in the treatment of malignant GOO.

  19. Estimation of Palliative Care Need in the Urban Community of Puducherry (United States)

    Daya, A Praveena; Sarkar, Sonali; Kar, Sitanshu Sekhar


    Context: The coverage of palliative care services is inadequate in India. Data on number of people needing palliative care and disease conditions needing palliative care needs to be estimated prior to planning of service in any area. Aims: To estimate the prevalence of need of palliative care in an urban area of Puducherry. Settings and Design: Exploratory cross-sectional study conducted in two areas, Senthamarainagar and Thiruvalluvarnagar having about 500 households each in Muthialpet area in urban Puducherry. Materials and Methods: All residents were interviewed using a structured questionnaire containing sociodemographic details, information regarding chronic illness and a screening tool to identify people in need of palliative care. Statistical Analysis: Variables such as sociodemographic characteristics were expressed in percentages. The main outcome variable, the number of people in need of palliative care was expressed in the prevalence percentages. Results: A total of 3554 individuals were surveyed in 1004 households. A period prevalence of need of palliative care in this community was 6.1/1000 population. The prevalence among those aged ≥15 years was 8/1000 population. The mean age of people requiring palliative care was 62 years. The most common disease condition in need of palliative care was old age-related weakness (41%). Most of them were women (17/22) and from lower socioeconomic class (6/22). Conclusions: Around 6/1000 population was identified to be in need of palliative care. The prevalence was highest among the elderly women, low socioeconomic class, widowed, those with less education, and those suffering from age-related weakness. PMID:28216868

  20. Pediatric Palliative Care: A Personal Story (United States)

    ... Try it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 312 ... patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  1. A Delphi study to develop the Association for Palliative Medicine consensus syllabus for undergraduate palliative medicine in Great Britain and Ireland. (United States)

    Paes, P; Wee, B


    The Association for Palliative Medicine (APM) produced a previous undergraduate palliative medicine syllabus in 1992. This study describes the process of developing the new APM consensus syllabus against the background of changes in medical education and palliative medicine since 1992. The syllabus was derived by means of a Delphi study carried out amongst experts in palliative medicine across Britain and Ireland. Forty-three participants agreed to take part. Three rounds of the Delphi study took place. Consensus (75% agreement) was achieved in over 90% of the outcomes. The new syllabus is broken down into the following sections: basic principles, physical care, psychosocial care, culture, language, religious and spiritual issues, ethics and legal frameworks. Learning outcomes are categorised as essential or desirable. Using a Delphi study, we have developed a consensus syllabus for undergraduate palliative medicine. This is sufficiently flexible to allow all medical schools to ensure that their students achieve the essential learning outcomes by the time they graduate, whereas those with more generous curricular space will additionally be able to deliver selected desirable learning outcomes.

  2. EPEC-O for African Americans - Module 16 AA - Spirituality (United States)

    The sixteenth module of the EPEC-O (Education in Palliative and End-of-Life Care for Oncology) Self-Study: Cultural Considerations When Caring for African Americans explores the importance of spirituality in the lived experience of most African Americans, and how they utilize spirituality and religion to cope with serious stressors such as life-threatening illness.

  3. Active tuberculosis is associated with worse clinical outcomes in HIV-infected African patients on antiretroviral therapy.

    Directory of Open Access Journals (Sweden)

    Abraham M Siika

    Full Text Available OBJECTIVE: This cohort study utilized data from a large HIV treatment program in western Kenya to describe the impact of active tuberculosis (TB on clinical outcomes among African patients on antiretroviral therapy (ART. DESIGN: We included all patients initiating ART between March 2004 and November 2007. Clinical (signs and symptoms, radiological (chest radiographs and laboratory (mycobacterial smears, culture and tissue histology criteria were used to record the diagnosis of TB disease in the program's electronic medical record system. METHODS: We assessed the impact of TB disease on mortality, loss to follow-up (LTFU and incident AIDS-defining events (ADEs through Cox models and CD4 cell and weight response to ART by non-linear mixed models. RESULTS: We studied 21,242 patients initiating ART-5,186 (24% with TB; 62% female; median age 37 years. There were proportionately more men in the active TB (46% than in the non-TB (35% group. Adjusting for baseline HIV-disease severity, TB patients were more likely to die (hazard ratio--HR = 1.32, 95% CI 1.18-1.47 or have incident ADEs (HR = 1.31, 95% CI: 1.19-1.45. They had lower median CD4 cell counts (77 versus 109, weight (52.5 versus 55.0 kg and higher ADE risk at baseline (CD4-adjusted odds ratio = 1.55, 95% CI: 1.31-1.85. ART adherence was similarly good in both groups. Adjusting for gender and baseline CD4 cell count, TB patients experienced virtually identical rise in CD4 counts after ART initiation as those without. However, the overall CD4 count at one year was lower among patients with TB (251 versus 269 cells/µl. CONCLUSIONS: Clinically detected TB disease is associated with greater mortality and morbidity despite salutary response to ART. Data suggest that identifying HIV patients co-infected with TB earlier in the HIV-disease trajectory may not fully address TB-related morbidity and mortality.

  4. Pain management: lessons from palliative care. (United States)

    Langlois, John P


    Reducing suffering and helping patients to control their symptoms are key components of palliative care. This commentary will offer a comprehensive definition of palliative care and will present a case history to illustrate how palliative care can benefit patients with chronic pain.

  5. Palliative Care Doula: an innovative model. (United States)

    Lentz, Judy C


    Walking the journey of serious illness is very difficult and stressful for patients and families. A universal principle of palliative care is caring for the patient/ family unit. This article introduces a model for the Palliative Care Doula for experienced and advanced practice palliative care nurses to support patients and families during the traumatic and vulnerable period of end-of-life care.

  6. Palliative care awareness among Indian undergraduate health care students: A needs-assessment study to determine incorporation of palliative care education in undergraduate medical, nursing and allied health education

    Directory of Open Access Journals (Sweden)

    Sakshi Sadhu


    Conclusion: The outcomes of the study showed that the basic knowledge of palliative care among students was inadequate, and students are unprepared and uncertain in their approach of delivering end-of-life care.

  7. Rawlsian Justice and Palliative Care

    DEFF Research Database (Denmark)

    Knight, Carl; Albertsen, Andreas


    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...... 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....

  8. Supporting rural family palliative caregivers. (United States)

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


    There is urgent need to effectively support the well-being of rural palliative family caregivers (FCGs). A mixed method study was conducted with 23 FCGs. Data collection included completion of an assessment questionnaire and semistructured interviews. The most prevalent needs identified by questionnaire were caring for the patient's pain, fatigue, body, and nourishment; FCG's fatigue and need for respite. Yet few FCGs wanted more attention to these needs by healthcare providers. FCGs resisted considering their own personal needs. Instead, they focused on needs related to providing care including to be(come) a palliative caregiver, be skilled and know more, navigate competing wishes, needs, demands, and priorities, and for "an extra pair of hands." Gaps in rural palliative services contributed to low expectations for assistance; reluctance to seek assistance was influenced by FCGs' resourcefulness and independence. Findings suggest that supporting FCGs will most likely be successful when framed in relation to their caregiving role.

  9. Pediatric palliative care

    Directory of Open Access Journals (Sweden)

    Trapanotto Manuela


    Full Text Available Abstract The WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family. Its purpose is to improve the quality of life of young patients and their families, and in the vast majority of cases the home is the best place to provide such care, but for cultural, affective, educational and organizational reasons, pediatric patients rarely benefit from such an approach. In daily practice, it is clear that pediatric patients experience all the clinical, psychological, ethical and spiritual problems that severe, irreversible disease and death entail. The international literature indicates a prevalence of incurable disease annually affecting 10/10,000 young people from 0 to 19 years old, with an annual mortality rate of 1/10,000 young people from birth to 17 years old. The needs of this category of patients, recorded in investigations conducted in various parts of the world, reveal much the same picture despite geographical, cultural, organizational and social differences, particularly as concerns their wish to be treated at home and the demand for better communications between the professionals involved in their care and a greater availability of support services. Different patient care models have been tested in Italy and abroad, two of institutional type (with children staying in hospitals for treating acute disease or in pediatric hospices and two based at home (the so-called home-based hospitalization and integrated home-based care programs. Professional expertise, training, research and organization provide the essential foundations for coping with a situation that is all too often underestimated and neglected.

  10. Palliative medicine and medical oncology. (United States)

    Maltoni, M; Amadori, D


    Traditionally, medical oncology and palliative care have been considered two distinct and separate disciplines, both as regards treatment objectives and delivery times. Palliative care in terminal stages, aimed exclusively at evaluating and improving quality of life, followed antitumor therapies, which concentrated solely on quantitative results (cure, prolongation of life, tumoral mass shrinkage). Over the years, more modern concepts have developed on the subject. Medical oncology, dealing with the skills and strategic co-ordination of oncologic interventions from primary prevention to terminal phases, should also include assessment and treatment of patients' subjective needs. Anticancer therapies should be evaluated in terms of both the quantitative and qualititative impact on patients' lives. Hence, the traditional view of palliative care has to be modified: it constitutes a philosophical and methodological approach to be adopted from the early phases of illness. It is not the evident cultural necessity of integrating medical oncology with palliative medicine that may be a matter of argument, but rather the organizational models needed to put this combined care into practice: should continuous care be guaranteed by a single figure, the medical oncologist, or rather by an interdisciplinary providers' team, including full-time doctors well-equipped for palliative care? In this paper the needs of cancer patients and the part that a complete oncologist should play to deal with such difficult and far-reaching problems are firstly described. Then, as mild provocation, data and critical considerations on the ever increasing needs of palliative care, the present shortcomings in quality of life and pain assessment and management by medical oncologists, and the uncertain efficacy of interventional programmes to change clinical practice are described. Finally, a model of therapeutic continuity is presented. which in our view is realistic and feasible: an Oncologic

  11. Music therapy in palliative medicine. (United States)

    Gallagher, L M; Huston, M J; Nelson, K A; Walsh, D; Steele, A L


    A partnership between The Cleveland Clinic Foundation and The Cleveland Music School Settlement has resulted in music therapy becoming a standard part of the care in our palliative medicine inpatient unit. This paper describes a music therapy program and its impact on patients, their families, and staff. A service delivery model is suggested for implementation and integration of music therapy within palliative medicine. Specific music therapy interventions, evaluation and documentation techniques are also mentioned. A description of patient and family responses to music therapy, staff satisfaction, and effectiveness of interventions is presented.

  12. Covered metallic stents for the palliation of colovesical fistula. (United States)

    Ahmad, Mukhtar; Nice, Colin; Katory, Mark


    Colovesical fistula is a distressing condition that is usually managed surgically. For some patients in whom surgery is not feasible, covered colonic stents offer palliation. We present two challenging cases with contrasting outcomes. The first case is a colovesical fistula secondary to malignancy with a successful outcome after stenting and the second a complex diverticular fistula with a poor outcome. From our limited experience, it is a useful technique but careful patient selection is essential to its safe application. There is little published experience of the use of these stents for colovesical fistula.

  13. Branding Palliative Care Units by Avoiding the Terms "Palliative" and "Hospice". (United States)

    Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai


    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.

  14. Clinical outcome of skin yaws lesions after treatment with benzathinebenzylpenicillin in a pygmy population in Lobaye, Central African Republic

    Directory of Open Access Journals (Sweden)

    Manirakiza Alexandre


    Full Text Available Abstract Background Yaws is a bacterial skin and bone infectious disease caused by Treponema pallidum pertenue. It is endemic, particularly among pygmies in Central African Republic. To assess the clinical cure rate after treatment with benzathinepenicillin in this population, we conducted a cohort survey of 243 patients in the Lobaye region. Findings and conclusion The rate of healing of lesions after 5 months was 95.9%. This relatively satisfactory level of therapeutic response implies that yaws could be controlled in the Central African Republic. Thus, reinforcement of the management of new cases and of contacts is suggested.

  15. Study protocol: optimization of complex palliative care at home via telemedicine. A cluster randomized controlled trial

    Directory of Open Access Journals (Sweden)

    Hasselaar Jeroen


    Full Text Available Abstract Background Due to the growing number of elderly with advanced chronic conditions, healthcare services will come under increasing pressure. Teleconsultation is an innovative approach to deliver quality of care for palliative patients at home. Quantitative studies assessing the effect of teleconsultation on clinical outcomes are scarce. The aim of this present study is to investigate the effectiveness of teleconsultation in complex palliative homecare. Methods/Design During a 2-year recruitment period, GPs are invited to participate in this cluster randomized controlled trial. When a GP refers an eligible patient for the study, the GP is randomized to the intervention group or the control group. Patients in the intervention group have a weekly teleconsultation with a nurse practitioner and/or a physician of the palliative consultation team. The nurse practitioner, in cooperation with the palliative care specialist of the palliative consultation team, advises the GP on treatment policy of the patient. The primary outcome of patient symptom burden is assessed at baseline and weekly using the Edmonton Symptom Assessment Scale (ESAS and at baseline and every four weeks using the Hospital Anxiety and Depression Scale (HADS. Secondary outcomes are self-perceived burden from informal care (EDIZ, patient experienced continuity of medical care (NCQ, patient and caregiver satisfaction with the teleconsultation (PSQ, the experienced problems and needs in palliative care (PNPC-sv and the number of hospital admissions. Discussion This is one of the first randomized controlled trials in palliative telecare. Our data will verify whether telemedicine positively affects palliative homecare. Trial registration The Netherlands National Trial Register NTR2817

  16. Reality of evidence-based practice in palliative care

    Institute of Scientific and Technical Information of China (English)

    Claire Visser; Gina Hadley; Bee Wee


    hTere has been a paradigm shitf in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically signiifcant beneifts may be marginal and may not be related to clinical meaningfulness. hTe typical treatmentvs. placebo comparison necessitated by ‘gold standard’ randomised controlled trials (RCTs) is not necessarily applicable. hTe complex multimorbidity of end of life care involves considerations of the patient’s physical, psychological, social and spiritual needs. In addition, the field of palliative care covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be diffcult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. hTis review uses examples of the management of cancer-related fatigue and death rattle (noisy breathing) to demonstrate the current state of EBM in palliative care. hTe future of EBM in palliative care needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity and size conducted by collaborative research networks using a ‘mixed methods approach’ are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes.

  17. Animal-Assisted Therapy in Pediatric Palliative Care. (United States)

    Gilmer, Mary Jo; Baudino, Marissa N; Tielsch Goddard, Anna; Vickers, Donna C; Akard, Terrah Foster


    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.

  18. Team Interactions in Specialized Palliative Care Teams: A Qualitative Study


    Klarare, Anna; Hagelin, Carina Lundh; Fürst, Carl Johan; Fossum, Bjoorn


    Background: Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned. Aim: The aim was to explore team interaction among team members in special...

  19. Variations in Parenting and Adolescent Outcomes among African American and Latino Families Living in Low-Income, Urban Areas (United States)

    Roche, Kathleen M.; Ensminger, Margaret E.; Cherlin, Andrew J.


    Drawing from social disorganization theory, this study examined how perceived neighborhood conditions modified associations between parenting and delinquency, depressive symptoms, and school problem behavior among more than 800 African American and Latino 10- to 14-year-olds participating in Welfare, Children, and Families: A Three-City Study.…

  20. Integration of palliative care in the context of rapid response: a report from the Improving Palliative Care in the ICU advisory board. (United States)

    Nelson, Judith E; Mathews, Kusum S; Weissman, David E; Brasel, Karen J; Campbell, Margaret; Curtis, J Randall; Frontera, Jennifer A; Gabriel, Michelle; Hays, Ross M; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Weiss, Stefanie P; Bassett, Rick; Boss, Renee D; Lustbader, Dana R


    Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved.

  1. On the palliative care unit. (United States)

    Selwyn, Peter A


    As a physician working in palliative care, the author is often privileged to share special moments with patients and their families at the end of life. This haiku poem recalls one such moment in that precious space between life and death, as an elderly woman, surrounded by her adult daughters, takes her last breath. (PsycINFO Database Record

  2. Analgesic prescribing in palliative care. (United States)

    Lowe, Emma; Hanchanale, Sarika; Hurlow, Adam


    Pain management requires a multimodal approach involving pharmacological and non-pharmacological strategies. It is important to take a detailed history and examine the patient before prescribing any analgesia. This article focuses on assessment and management of pain in palliative care patients.

  3. [Palliative care in heart failure]. (United States)

    Gavazzi, Antonello; Svanoni, Fausto; De Maria, Renata


    The natural history of heart failure (HF) is characterized by a progressive decline in functional capacity, punctuated by acute heart destabilization episodes which contribute to a spiraling worsening course. Advanced HF affects one in four patients who are referred to the hospital for the syndrome and has an estimated yearly incidence of 12 000 new cases in Italy. Life expectancy is very limited, and in general less than 50% of advanced HF patients are alive at 1-2 years. Advanced HF patients show a high, not modifiable mortality, severe symptoms and impaired quality of life. Treatment goals should focus on the improvement of symptoms and quality of life, the aims of palliative care. Palliative consultations during hospital admissions reduce the number of interventions and procedures in the last stages of life, the length of stay in the intensive care unit and general ward. HF patients who receive home palliative care are more likely to die at home, in accordance with their expressed will. The research project RF-MAR-2007-67955 aims to analyze, through a prospective observational registry, the palliative care needs of HF patients in Italy, to answer the gaps in knowledge on symptom changes during the terminal stages of the disease, on the quality of communication between healthcare professionals, patients and their families and caregivers' needs.

  4. A region-based palliative care intervention trial using the mixed-method approach: Japan OPTIM study

    Directory of Open Access Journals (Sweden)

    Morita Tatsuya


    Full Text Available Abstract Background Disseminating palliative care is a critical task throughout the world. Several outcome studies explored the effects of regional palliative care programs on a variety of end-points, and some qualitative studies investigated the process of developing community palliative care networks. These studies provide important insights into the potential benefits of regional palliative care programs, but the clinical implications are still limited, because: 1 many interventions included fundamental changes in the structure of the health care system, and, thus, the results would not be applicable for many regions where structural changes are difficult or unfeasible; 2 patient-oriented outcomes were not measured or explored only in a small number of populations, and interpretation of the results from a patient's view is difficult; and 3 no studies adopted a mixed-method approach using both quantitative and qualitative methodologies to interpret the complex phenomenon from multidimensional perspectives. Methods/designs This is a mixed-method regional intervention trial, consisting of a pre-post outcome study and qualitative process studies. The primary aim of the pre-post outcome study is to evaluate the change in the number of home deaths, use of specialized palliative care services, patient-reported quality of palliative care, and family-reported quality of palliative care after regional palliative care intervention. The secondary aim is to explore the changes in a variety of outcomes, including patients' quality of life, pain intensity, family care burden, and physicians' and nurses' knowledge, difficulties, and self-perceived practice. Outcome measurements used in this study include the Care Evaluation Scale, Good Death Inventory, Brief pain Inventory, Caregiving Consequence Inventory, Sense of Security Scale, Palliative Care Knowledge test, Palliative Care Difficulties Scale, and Palliative Care Self-reported Practice Scale. Study

  5. Undergraduate curricula in palliative medicine: a systematic analysis based on the palliative education assessment tool.

    LENUS (Irish Health Repository)

    Schiessi, C


    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.

  6. Weaving interdisciplinary and discipline-specific content into palliative care education: one successful model for teaching end-of-life care. (United States)

    Supiano, Katherine P


    While palliative care is best delivered in an interdisciplinary format, courses teaching the interdisciplinary approach to palliative care are rare in healthcare education. This article describes a graduate-level course in palliative care for students in nursing, pharmacy, social work, and gerontology taught by faculty from each discipline. The overarching goals of this course are to convey core palliative care knowledge across disciplines, articulate the essential contribution of each discipline in collaborative care, and to define interdisciplinary processes learners need to understand and navigate interdisciplinary palliative care. Learning outcomes included increased knowledge in palliative care, enhanced attitudes in practice and application of skills to clinical practice settings, increased ability to contribute discipline-specific knowledge to their teams' discussions, and a sense of increasing confidence in participating in the care of complex patients, communicating with families, and contributing to the team as a member of their own discipline.

  7. Effectiveness of palliative care including physiotherapy in hiv patients a review of the literature

    Directory of Open Access Journals (Sweden)

    J. Uwimana


    Full Text Available It is estimated that 41 million people throughout the world are living with HIV/AIDS and of these 39 million are in sub-Saharan Africa(UNAIDS 2004.  The HIV/AIDS epidemic is devastating the African continent.In Africa poorly resourced health care infrastructure further impairs the quality of life in HIV sufferers. Palliative care is an approach that aims to improve the quality of life of people living with threatening diseases such as cancer and HIV/AIDS. This review aimed to determine the efficacy of palliative care. Complementary therapies such as Cognitive Behavioural Therapy, peer/counselling group therapy, massage  therapy, and exercise therapy constitute palliative care. Seventeen articles published in peer reviewed journals during the period 1990-2005 were reviewed. The findings of our review demonstrate that there are indications that palliative care can be effective in improving the quality of life in patients with life threatening diseases such HIV/AIDS. Research in this field is complicated by the heterogeneity of study samples, difficulty in patient recruitment, and death before the end of the intervention period. Future research in this area should aim to include larger study samples, using valid tools to assess quality of life and to employ qualitative methods in studies to assess the effectiveness of palliative care.

  8. Managing palliative care for adults with advanced heart failure. (United States)

    Kaasalainen, Sharon; Strachan, Patricia H; Brazil, Kevin; Marshall, Denise; Willison, Kathleen; Dolovich, Lisa; Taniguchi, Alan; Demers, Catherine


    The purpose of this study was to explore the care processes experienced by community-dwelling adults dying from advanced heart failure, their family caregivers, and their health-care providers. A descriptive qualitative design was used to guide data collection, analysis, and interpretation. The sample comprised 8 patients, 10 informal caregivers, 11 nurses, 3 physicians, and 3 pharmacists. Data analysis revealed that palliative care was influenced by unique contextual factors (i.e., cancer model of palliative care, limited access to resources, prognostication challenges). Patients described choosing interventions and living with fatigue, pain, shortness of breath, and functional decline. Family caregivers described surviving caregiver burden and drawing on their faith. Health professionals described their role as trying to coordinate care, building expertise, managing medications, and optimizing interprofessional collaboration. Participants strove towards 3 outcomes: effective symptom management, satisfaction with care, and a peaceful death.

  9. Hybrid Palliation for Ductal-Dependent Systemic Circulation. (United States)

    Evans, William N; Galindo, Alvaro; Rothman, Abraham; Ciccolo, Michael L; Carrillo, Sergio A; Acherman, Ruben J; Mayman, Gary A; Cass, Kathleen A; Kip, Katrinka T; Luna, Carlos F; Ludwick, Joseph M; Rollins, Robert C; Castillo, William J; Alexander, John A; Restrepo, Humberto


    We reviewed our hybrid palliation experience for 91 neonates, with ductal-dependent systemic circulation, born between August 2007 and October 2015. For analysis, we stratified the 91 patients by a risk factor (RF) score and divided them into three groups: (1) high-risk two-functional ventricles (2V) median RF score of 3 (N = 20); (2) low-risk one-functional ventricle (1V) RF score 0-1 (N = 32); and (3) high-risk 1V RF score ≥2 (N = 39). Midterm survival (median 4 years) by group was: (1) 95 %, (2) 91 %, and (3) 15 %, (p = 0.001). In conclusion, hybrid palliation was associated with excellent midterm results for high-risk 2V and low-risk 1V patients with ductal-dependent systemic circulation. In contrast, high-risk 1V patients had significantly worse outcomes.

  10. [Palliative care birth plan: a field of perinatal medicine to build]. (United States)

    Tosello, B; Le Coz, P; Payot, A; Gire, C; Einaudi, M-A


    Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan.

  11. Smartphone applications in palliative homecare. (United States)

    Dhiliwal, Sunil R; Salins, Naveen


    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.

  12. Smartphone applications in palliative homecare

    Directory of Open Access Journals (Sweden)

    Sunil R Dhiliwal


    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.

  13. Palliative Care and Death Anxiety

    Directory of Open Access Journals (Sweden)

    Figen Inci


    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.

  14. Working with a palliative care team. (United States)

    Wiebe, Lauren A; Von Roenn, Jamie H


    The interdisciplinary team is fundamental to the successful delivery of quality palliative care. Ideally, the oncologist is an integral part of either the palliative care or hospice team and serves to maintain continuity of care through the end of life. In the United States, barriers can complicate the oncologist's easy integration into the hospice team as patients often remain at home. Also, there may be philosophical or clinical practice differences between oncology and palliative care at first glance. This article focuses on ways to overcome these potential obstacles and use differences in training to strengthen the team's impact. A significant part of oncology practice includes managing difficult symptoms, mitigating suffering, and discussing priorities of care--all elements of palliative medicine that oncologists perform daily. Participating on a palliative care team may be natural for oncologists, and some might elect to provide integrated palliative cancer care for patients throughout the course of their disease and at the end of life. Thus, there is a need to enrich the general oncologist's knowledge of specialized palliative medicine, as recommended by the major cancer organizations, including the American Society of Clinical Oncology and the European Society of Medical Oncology.It is important to know when to incorporate a palliative or hospice care team into the routine management of a cancer patient and what benefits these referrals can provide. Oncologists have an obligation to provide high-quality palliative care to all patients in an integrated fashion, including patients with advanced cancer enrolled in clinical trials for early therapeutics.

  15. 'Heated political dynamics exist ...': examining the politics of palliative care in rural British Columbia, Canada. (United States)

    Crooks, Valorie A; Castleden, Heather; Hanlon, Neil; Schuurman, Nadine


    Palliative care is delivered by a number of professional groups and informal providers across a range of settings. This arrangement works well in that it maximizes avenues for providing care, but may also bring about complicated 'politics' due to struggles over control and decision-making power. Thirty-one interviews conducted with formal and informal palliative care providers in a rural region of British Columbia, Canada, are drawn upon as a case study. Three types of politics impacting on palliative care provision are identified: inter-community, inter-site, and inter-professional. Three themes crosscut these politics: ownership, entitlement, and administration. The politics revealed by the interviews, and heretofore underexplored in the palliative literature, have implications for the delivery of palliative care. For example, the outcomes of the politics simultaneously facilitate (e.g. by promoting advocacy for local services) and serve as a barrier to (e.g. by privileging certain communities/care sites/provider) palliative care provision.

  16. Improving the evidence base in palliative care to inform practice and policy: thinking outside the box. (United States)

    Aoun, Samar M; Nekolaichuk, Cheryl


    The adoption of evidence-based hierarchies and research methods from other disciplines may not completely translate to complex palliative care settings. The heterogeneity of the palliative care population, complexity of clinical presentations, and fluctuating health states present significant research challenges. The aim of this narrative review was to explore the debate about the use of current evidence-based approaches for conducting research, such as randomized controlled trials and other study designs, in palliative care, and more specifically to (1) describe key myths about palliative care research; (2) highlight substantive challenges of conducting palliative care research, using case illustrations; and (3) propose specific strategies to address some of these challenges. Myths about research in palliative care revolve around evidence hierarchies, sample heterogeneity, random assignment, participant burden, and measurement issues. Challenges arise because of the complex physical, psychological, existential, and spiritual problems faced by patients, families, and service providers. These challenges can be organized according to six general domains: patient, system/organization, context/setting, study design, research team, and ethics. A number of approaches for dealing with challenges in conducting research fall into five separate domains: study design, sampling, conceptual, statistical, and measures and outcomes. Although randomized controlled trials have their place whenever possible, alternative designs may offer more feasible research protocols that can be successfully implemented in palliative care. Therefore, this article highlights "outside the box" approaches that would benefit both clinicians and researchers in the palliative care field. Ultimately, the selection of research designs is dependent on a clearly articulated research question, which drives the research process.

  17. Hospital Palliative Care Teams and Post-Acute Care in Nursing Facilities: An Integrative Review. (United States)

    Carpenter, Joan G


    Although palliative care consultation teams are common in U.S. hospitals, follow up and outcomes of consultations for frail older adults discharged to nursing facilities are unclear. To summarize and critique research on the care of patients discharged to nursing facilities following a hospital-based palliative care consult, a systematic search of PubMed, CINAHL, Ageline, and PsycINFO was conducted in February 2016. Data from the articles (N = 12) were abstracted and analyzed. The results of 12 articles reflecting research conducted in five countries are presented in narrative form. Two studies focused on nurse perceptions only, three described patient/family/caregiver experiences and needs, and seven described patient-focused outcomes. Collectively, these articles demonstrate that disruption in palliative care service on hospital discharge and nursing facility admission may result in high symptom burden, poor communication, and inadequate coordination of care. High mortality was also noted. [Res Gerontol Nurs. 2017; 10(1):25-34.].

  18. Palliative sedation versus euthanasia: an ethical assessment. (United States)

    ten Have, Henk; Welie, Jos V M


    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.

  19. Emotion socialization and ethnicity: an examination of practices and outcomes in African American, Asian American, and Latin American families. (United States)

    Morelen, Diana; Thomassin, Kristel


    The current review paper summarizes the literature on parental emotion socialization in ethnically diverse families in the United States. Models of emotion socialization have been primarily developed using samples of European American parents and children. As such, current categorizations of "adaptive" and "maladaptive" emotion socialization practices may not be applicable to individuals from different ethnic backgrounds. The review examines current models of emotion socialization, with particular attention paid to the demographic breakdown of the studies used to develop these models. Additionally, the review highlights studies examining emotion socialization practices in African American, Asian American, and Latin American families. The review is synthesized with summarizing themes of similarities and differences across ethnic groups, and implications for culturally sensitive research and practice are discussed.

  20. Attitudes of Nonpalliative Care Nurses towards Palliative Care

    Directory of Open Access Journals (Sweden)

    Victoria Tait


    Full Text Available The quality of palliative care given to terminally ill patients and their family members can be directly impacted by the attitudes that nurses hold towards palliative care. This study aimed to investigate the attitudes of nonpalliative care nurses towards death and dying in the context of palliative care. Nurses working within the medical aged care, cardiology and respiratory wards at two metropolitan teaching hospitals in Sydney completed the Frommelt Attitudes Towards Care of the Dying (FATCOD scale, an anonymous self-administered questionnaire, and a twelve-item demographic questionnaire. A total of 95 completed surveys were used in the final analysis. The total FATCOD score was 119.8±11.1, patient FATCOD was 79.6±8.6, and family FATCOD was 40.2±4.4. Of significance, the professional variables designation and role were associated with attitudes in the total FATCOD and country of birth, designation, highest level of education, and role were associated with attitudes towards the patient FATCOD. Scores for communication between the nurse and the terminally ill patient were poor. Health care facilities should focus on developing strategies to improve the communication skills among nonpalliative care nurses in order to optimize patient outcomes.

  1. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... 1,556 views 1:05:13 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before Death 11,472 views 5:27 Faces Of Palliative ... 984 views 56:49 A Certain Kind Of Death - Documentary - Duration: 1:09:38. havoctrend 4,908, ...

  2. Need for palliative care for neurological diseases. (United States)

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


    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.

  3. Palliative medicine update: a multidisciplinary approach

    NARCIS (Netherlands)

    Vissers, K.C.P.; Brand, M.W. van den; Jacobs, J.; Groot, M. de; Veldhoven, C.; Verhagen, C.; Hasselaar, J.; Engels, Y.


    Palliative medicine is a young specialty that is officially recognized in relatively few countries. The World Health Organization published an adapted definition in 2002, describing palliative care as an approach that improves the quality of life of patients and their families facing the problems as

  4. Palliative care in chronic obstructive pulmonary disease. (United States)

    Lilly, Evan J; Senderovich, Helen


    Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development.

  5. Parenting and palliative care in paediatric oncology

    NARCIS (Netherlands)

    Kars, M.C.


    Although many children with cancer can be cured, approximately 25 % will die of their disease. These deaths are usually anticipated and preceded by a period of palliative care focused on the end-of-life, usually referred to as the palliative phase. The PRESENCE-study was aimed at a better understand


    NARCIS (Netherlands)

    van den Heuvel, Wim J. A.; Olaroiu, Marinela


    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 psychos

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

    ... chaplains, and counselors. Support may involve art and music therapists, home health aides, nutritionists, and respite care providers. How does palliative care help children and their families? A child’s serious illness affects the entire family. Pediatric palliative care can support ...

  8. Population-specific prognostic models are needed to stratify outcomes for African-Americans with diffuse large B-cell lymphoma. (United States)

    Chen, Qiushi; Ayer, Turgay; Nastoupil, Loretta J; Koff, Jean L; Staton, Ashley D; Chhatwal, Jagpreet; Flowers, Christopher R


    Diffuse large B-cell lymphoma (DLBCL) demonstrates significant racial differences in age of onset, stage, and survival. To examine whether population-specific models improve prediction of outcomes for African-American (AA) patients with DLBCL, we utilized Surveillance, Epidemiology, and End Results data and compared stratification by the international prognostic index (IPI) in general and AA populations. We also constructed and compared prognostic models for general and AA populations using multivariable logistic regression (LR) and artificial neural network approaches. While the IPI adequately stratified outcomes for the general population, it failed to separate AA DLBCL patients into distinct risk groups. Our AA LR model identified age ≥ 55 (odds ratio 0.45, [95% CI: 0.36, 0.56], male sex (0.75, [0.60, 0.93]), and stage III/IV disease (0.43, [0.34, 0.54]) as adverse predictors of 5-year survival for AA patients. In addition, general-population prognostic models were poorly calibrated for AAs with DLBCL, indicating a need for validated AA-specific prognostic models.

  9. [Multiprofessional team working in palliative medicine]. (United States)

    Osaka, Iwao


    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".

  10. 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)


    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.)

  11. Clinical Characteristics and 30-Day Outcomes of Intermittent Hemodialysis for Acute Kidney Injury in an African Intensive Care Unit

    Directory of Open Access Journals (Sweden)

    Arthur Kwizera


    Full Text Available Introduction. Acute kidney injury (AKI is a common occurrence in the intensive care unit (ICU. Studies have looked at outcomes of renal replacement therapy using intermittent haemodialysis (IHD in ICUs with varying results. Little is known about the outcomes of using IHD in resource-limited settings where continuous renal replacement therapy (CRRT is limited. We sought to determine outcomes of IHD among critically ill patients admitted to a low-income country ICU. Methods. A retrospective review of patient records was conducted. Patients admitted to the ICU who underwent IHD for AKI were included in the study. Patients’ demographic and clinical characteristics, cause of AKI, laboratory parameters, haemodialysis characteristics, and survival were interpreted and analyzed. Primary outcome was mortality. Results. Of 62 patients, 40 had complete records. Median age of patients was 38.5 years. Etiologic diagnoses associated with AKI included sepsis, malaria, and ARDS. Mortality was 52.5%. APACHE II (OR 4.550; 95% CI 1.2–17.5, p=0.028, mechanical ventilation (OR 13.063; 95% CI 2.3–72, p=0.003, and need for vasopressors (OR 16.8; 95% CI 3.4–82.6, p=0.001 had statistically significant association with mortality. Conclusion. IHD may be a feasible alternative for RRT in critically ill haemodynamically stable patients in low resource settings where CRRT may not be available.

  12. EPEC-O for African Americans - Module 7 AA - Communicating Effectively (United States)

    The seventh module of the EPEC-O (Education in Palliative and End-of-Life Care for Oncology) Self-Study: Cultural Considerations When Caring for African Americans explores communication issues pertinent to African Americans with cancer and their health care providers, discusses strategies for culturally sensitive communication, and presents the SPIKES protocol, a practical framework for effective communication.

  13. The Effect of Horticultural Therapy on the Quality of Life of Palliative Care Patients. (United States)

    Lai, Claudia Kam-Yuk; Lau, Carmen Ka-Yan; Kan, Wai Yin; Lam, Wai Man; Fung, Connie Yuen Yee


    Palliative care patients experienced a variety of needs and perceived their quality of life as being only fair. This study adopted a single group repeated-measure design to investigate the effect of horticultural therapy on the quality of life of palliative care patients using the Quality of Life Concern in End of Life Questionnaire. Significant differences in the domains of "existential distress" and "health care concern" were observed immediately post-intervention and at four weeks post-intervention, respectively. No other significant differences were seen in the other domains or in the total mean score of the outcome measure.

  14. Palliative medicine update: a multidisciplinary approach. (United States)

    Vissers, Kris C P; van den Brand, Maria W M; Jacobs, Jose; Groot, Marieke; Veldhoven, Carel; Verhagen, Constans; Hasselaar, Jeroen; Engels, Yvonne


    Palliative medicine is a young specialty that is officially recognized in relatively few countries. The World Health Organization published an adapted definition in 2002, describing palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. When the accent is shifting from curative to palliative, the goal of management is the maintenance or improvement of the patient's quality of life. The different dimensions of palliative care and the multitude of types of care to be provided require a multidisciplinary, well-functioning team, effective communication and a clear task division between primary and hospital care. Considering the complexity of care for incurable patients, a multidisciplinary approach is a prerequisite to balance curative and palliative intervention options. Optimal functioning of a team requires excellent training, communication and a description of the tasks and responsibilities of each team member. More and more advanced care planning is introduced in palliative care, focusing on an early identification of patients in a palliative trajectory and on the prevention of annoying symptoms, hoping that this approach results in an improved quality of life for the individual patient, less useless technical investigations and a better end-of-life care on the place the patient and his family desires.

  15. Palliative care and the Indian neurologist

    Directory of Open Access Journals (Sweden)

    Roop Gursahani


    Full Text Available End-of-life care is an integral part of neurology practice, and neuropalliative medicine is an emerging neurology subspeciality. This begins with serious illness communication as a protocol-based process that depends on an evaluation of patient autonomy and accurate prognostication. Communication needs vary between chronic, life-limiting neurologic illnesses and acute brain injury. In an ideal situation, the patient's wishes are spelled out in advance care plans and living wills, and surrogates have only limited choices for implementation. Palliative care prepares for decline and death as an expected outcome and focuses on improving the quality of life for both the patients and their caregivers. In the Intensive Care Unit, this may require clarity on withholding and withdrawal of treatment. In all locations of care, the emphasis is on symptom control. Neurologists are the quintessential physicians, and our “dharma” is best served by empathetically bringing our technical knowledge and communication skills into easing this final transition for our patients and their families to the best of our ability.

  16. [Introduction to palliative care for the oncologist-history and basic principles of palliative care]. (United States)

    Shima, Yasuo


    The basic principle of palliative care has evolved over time and is the historical origin of the modern hospice. WHO proposed the first definition of palliative care in 1989, and the definition was revised in 2002. These definitions have something in common. Both relieve the pain and suffering to improve QOL. Palliative care is also good for any kind of life-threatening disease, regardless of whether it requires short or long term recuperation. That also need to be able to accept equally all the people of the community. The provision of general palliative care is the responsibility of all medical, nursing, and health professionals for the welfare of all patients with life-threatening disease. Specialist palliative care is based on the basic principles of palliative care, intensive clinical training, and systematic acquisition of knowledge and skills training to support palliative care education, clinical research and training provided by the profession. It has been established by nursing and medical experts in palliative care that palliative care can provide expertise in interdisciplinary teams in different settings. It is necessary that the medical system.

  17. Improving search filter development: a study of palliative care literature

    Directory of Open Access Journals (Sweden)

    Tieman Jennifer


    Full Text Available Abstract Background It is difficult to systematically search for literature relevant to palliative care in general medical journals. A previously developed search filter for use on OVID Medline validated using a gold standard set of references identified through hand searching, achieved an unacceptably low sensitivity (45.4%. Retrieving relevant literature is integral to support evidence based practice, and understanding the nature of the incorrectly excluded citations (false negatives using the filter may lead to improvement in the filter's performance. Methods The objectives were to describe the nature of subjects reflected in the false negative citations and to empirically improve the sensitivity of the search filter. A thematic analysis of MeSH terms by three independent reviewers was used to describe the subject coverage of the missed records. Using a frequency analysis of MeSH terms, those headings which could individually contribute at least 2.5% to sensitivity (occurring 19 or more times were added to the search filter. All previously run searches were rerun at the same time as the revised filter, and results compared. Results Thematic analysis of MeSH terms identified thirteen themes reflected in the missing records, none of them intrinsically palliative. The addition of six MeSH terms to the existing search filter (physician-patient relations, prognosis, quality of life, survival rate, treatment outcome and attitude to health led to an increase in sensitivity from 46.3% to 64.7%, offset by a decrease in precision from 72.6% to 21.9%. Conclusion The filter's sensitivity was successfully increased using frequency analysis of MeSH terms, offset by a decrease in precision. A thematic analysis of MeSH terms for the false negative citations confirmed the absence of any intrinsically palliative theme or term, suggesting that future improvements to search filters for palliative care literature will first depend on better identifying how

  18. Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association. (United States)

    Braun, Lynne T; Grady, Kathleen L; Kutner, Jean S; Adler, Eric; Berlinger, Nancy; Boss, Renee; Butler, Javed; Enguidanos, Susan; Friebert, Sarah; Gardner, Timothy J; Higgins, Phil; Holloway, Robert; Konig, Madeleine; Meier, Diane; Morrissey, Mary Beth; Quest, Tammie E; Wiegand, Debra L; Coombs-Lee, Barbara; Fitchett, George; Gupta, Charu; Roach, William H


    The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.

  19. Social networks and social support among ball-attending African American men who have sex with men and transgender women are associated with HIV-related outcomes. (United States)

    Arnold, Emily A; Sterrett-Hong, Emma; Jonas, Adam; Pollack, Lance M


    The House Ball Community (HBC) is an understudied network of African American men who have sex with men and transgender women, who join family-like houses that compete in elaborate balls in cities across the United States. From 2011 to 2012, we surveyed 274 recent attendees of balls in the San Francisco Bay Area, focusing on social networks, social support, and HIV-related behaviours. Participants with a high percentage of alters who were supportive of HIV testing were significantly more likely to have tested in the past six months (p = .02), and less likely to have engaged in unprotected anal intercourse (UAI) in the past three months (p = .003). Multivariate regression analyses of social network characteristics, and social support, revealed that testing in the past six months was significantly associated with social support for safer sex, instrumental social support, and age. Similarly, UAI in the past three months was significantly associated with social support for safer sex, homophily based on sexual identity and HIV status. HIV-related social support provided through the HBC networks was correlated with recent HIV testing and reduced UAI. Approaches utilising networks within alternative kinship systems, may increase HIV-related social support and improve HIV-related outcomes.

  20. Palliative embolization of renal tumors

    Directory of Open Access Journals (Sweden)

    Jaganjac Suad


    Full Text Available Background/Aim. Palliative embolization of renal tumors is the method of choice in the treatment of advanced inoperable renal cell carcinoma in patients with hematuria and pain. Patients with small tumors in the remaining solitary kidney who refuse surgery are suitable for this type of therapy as well as patients with centrally located inoperable tumors. The prerequisite for successful capillary embolization is the closure of the main arte-rial trunk with metal spirals. Methods. In the period from 2000 to 2010 we conducted 42 palliative embolizations. The average age of the patients was 75 years, including 26 men and 16 women. In 8 of the patients the intervention was repeated and in one with severe AV shunts embolization was performed 4 times. Embolization was performed with alcohol, Ivalon 150-250 μm and with metal coils. Results. No serious complications were observed during and after the intervention. Fourteen patient were still alive then and among the deceased patients the average survival time was 13.5 ± 10.8 months with the range of 1 to 56 months. The minimal survival time was 1 month with a maxi-mum survival time of 56 months. Conclusion. Our results are consistent with data in the literature. Survival in patients without metastases was longer than in those with metastases, as con-firmed by the 14 of the patients from the study. An additional therapeutic safety in the treatment of small cancers is provided with a combination therapy of embolization and radiofrequency thermoablation.

  1. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... of Rachel—a pediatric neuroblastoma patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category Science & Technology License Standard ...

  2. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? Cancel ... later? Sign in to add this video to a playlist. Sign in Share More Report Need to ...

  3. [Neonatal palliative care at home: Contribution of the regional pediatric palliative care team]. (United States)

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


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

  4. Dental expression and role in palliative treatment

    Directory of Open Access Journals (Sweden)

    Rajiv Saini


    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.

  5. Outcome evaluation of Family Eats: An eight-session web-based program promoting healthy home food environments and dietary behaviors for African American families (United States)

    This article presents the results of a randomized clinical trial evaluating the eight-session Family Eats web-based intervention promoting healthy home food environments for African American families. African American families (n=126) with 8- to 12-year-old children completed online baseline questio...

  6. Outcome Evaluation of "Family Eats": An Eight-Session Web-Based Program Promoting Healthy Home Food Environments and Dietary Behaviors for African American Families (United States)

    Cullen, Karen Weber; Thompson, Debbe; Chen, Tzu-An


    This article presents the results of a randomized clinical trial evaluating the eight-session "Family Eats" web-based intervention promoting healthy home food environments for African American families. African American families (n = 126) with 8- to 12-year-old children completed online baseline questionnaires and were randomized into…

  7. Where there is no morphine: The challenge and hope of palliative care delivery in Tanzania

    Directory of Open Access Journals (Sweden)

    Kristopher Hartwig


    Full Text Available Background: In Tanzania, a country of 42 million, access to oral morphine is rare.Aim: To demonstrate the effectiveness of palliative care teams in reducing patients’ pain and in increasing other positive life qualities in the absence of morphine; and to document the psychological burden experienced by their clinical providers, trained in morphine delivery, as they observed their patients suffering and in extreme pain.Setting: One hundred and forty-fie cancer patients were included from 13 rural hospitals spread across Tanzania.Method: A mixed method study beginning with a retrospective quantitative analysis of cancer patients who were administered the APCA African POS tool four times. Bivariate analyses of the scores at time one and four were compared across the domains. The qualitative arm included an analysis of interviews with six nurses, each with more than fie years’ palliative care experience and no access to strong opioids.Results: Patients and their family caregivers identifid statistically signifiant (p < 0.001 improvements in all of the domains. Thematic analysis of nurse interviews described the patient and family benefis from palliative care but also their great distress when ‘bad cases’ arose who would likely benefi only from oral morphine.Conclusion: People living with chronic cancer-related pain who receive palliative care experience profound physical, spiritual and emotional benefis even without oral morphine. These results demonstrate the need for continued advocacy to increase the availability of oral morphine in these settings in addition to palliative care services.

  8. Detailed statistical analysis plan for the Danish Palliative Care Trial (DanPaCT)

    DEFF Research Database (Denmark)

    Johnsen, Anna Thit; Petersen, Morten Aagaard; Gluud, Christian


    BACKGROUND: Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialized palliative care (SPC) could offer improvements. The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer will benefit...... from being referred to 'early SPC'. DanPaCT is a multicenter, parallel-group, superiority clinical trial with 1:1 randomization. The planned sample size was 300 patients. The primary data collection for DanPaCT is finished. To prevent outcome reporting bias, selective reporting, and data-driven results......-individualised outcome representing the score of the symptom or problem that had the highest intensity out of seven at baseline assessed with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Secondary outcomes are the seven scales that are represented...

  9. Palliative Care in Iran: Moving Toward the Development of Palliative Care for Cancer. (United States)

    Rassouli, Maryam; Sajjadi, Moosa


    Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon.

  10. Antiretroviral therapy enrollment characteristics and outcomes among HIV-infected adolescents and young adults compared with older adults--seven African countries, 2004-2013. (United States)

    Auld, Andrew F; Agolory, Simon G; Shiraishi, Ray W; Wabwire-Mangen, Fred; Kwesigabo, Gideon; Mulenga, Modest; Hachizovu, Sebastian; Asadu, Emeka; Tuho, Moise Zanga; Ettiegne-Traore, Virginie; Mbofana, Francisco; Okello, Velephi; Azih, Charles; Denison, Julie A; Tsui, Sharon; Koole, Olivier; Kamiru, Harrison; Nuwagaba-Biribonwoha, Harriet; Alfredo, Charity; Jobarteh, Kebba; Odafe, Solomon; Onotu, Dennis; Ekra, Kunomboa A; Kouakou, Joseph S; Ehrenkranz, Peter; Bicego, George; Torpey, Kwasi; Mukadi, Ya Diul; van Praag, Eric; Menten, Joris; Mastro, Timothy; Dukes Hamilton, Carol; Swaminathan, Mahesh; Dokubo, E Kainne; Baughman, Andrew L; Spira, Thomas; Colebunders, Robert; Bangsberg, David; Marlink, Richard; Zee, Aaron; Kaplan, Jonathan; Ellerbrock, Tedd V


    Although scale-up of antiretroviral therapy (ART) since 2005 has contributed to declines of about 30% in the global annual number of human immunodeficiency (HIV)-related deaths and declines in global HIV incidence, estimated annual HIV-related deaths among adolescents have increased by about 50% and estimated adolescent HIV incidence has been relatively stable. In 2012, an estimated 2,500 (40%) of all 6,300 daily new HIV infections occurred among persons aged 15-24 years. Difficulty enrolling adolescents and young adults in ART and high rates of loss to follow-up (LTFU) after ART initiation might be contributing to mortality and HIV incidence in this age group, but data are limited. To evaluate age-related ART retention challenges, data from retrospective cohort studies conducted in seven African countries among 16,421 patients, aged ≥15 years at enrollment, who initiated ART during 2004-2012 were analyzed. ART enrollment and outcome data were compared among three groups defined by age at enrollment: adolescents and young adults (aged 15-24 years), middle-aged adults (aged 25-49 years), and older adults (aged ≥50 years). Enrollees aged 15-24 years were predominantly female (81%-92%), commonly pregnant (3%-32% of females), unmarried (54%-73%), and, in four countries with employment data, unemployed (53%-86%). In comparison, older adults were more likely to be male (padolescents and young adults had higher LTFU rates in all seven countries, reaching statistical significance in three countries in crude and multivariable analyses. Evidence-based interventions to reduce LTFU for adolescent and young adult ART enrollees could help reduce mortality and HIV incidence in this age group.

  11. The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada. (United States)

    Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C


    With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future.

  12. [Neonatal palliative care and culture]. (United States)

    Bétrémieux, P; Mannoni, C


    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.

  13. Palliative Care: Video Tells a Mother's Story of Caring Support (United States)

    ... care, and when is it provided? Palliative care combines pain and symptom management with spiritual support, counseling, ... fully understand your needs. Read More "Palliative Care" Articles Increasing the quality of life for patients and ...

  14. Palliative care situation in Palestinian Authority. (United States)

    Shawawra, Mousa; Khleif, Amal Dweib


    Palliative care is a very new concept in Palestine. In fact, it is still not applicable or provided within the Palestinian health care system. However, Al-Sadeel Society had organized a one day workshop in Bethlehem on November 2008 for the health professionals from the governmental and non-governmental sectors to initiate and introduce the idea of palliative care for the first time in Palestine. The general population of Palestine is approximately 2.4 millions (2007), with a life expectancy of 74.3 years of age, the death rate is 3.7 per 1000 population, having 8,910 deaths a year. Deaths due to cancer were 2,305 in five years (1999-2003), where 5,542 new cases were newly diagnosed in the same period. Health services available for cancer patients are hospital units either in patient or day care units. According to the ministry of health (MOH) statistics there are 75 beds in oncology departments in MOH hospitals; represent 2.7% of the total number of beds available, and 60 beds in daily care departments with an occupancy rate at 231.8%. There is no hospice or bereavement follow up care available for patients or their families. Despite the fact that the Palestinian culture is one of the cultures that respect and care for the elderly, but at the end of life, when the load of symptoms is high, most of the patient are care for at hospitals, and usually dye there, because the families are not able to care for their patients, and as there is no system for home care available for the Palestinian patients, and if it is available it is available in limited places and on private bases that are expensive and not affordable to the majority of patients, gross domestic product (GPD) per capita= 1,100 as 2007 estimates). We conducted a needs assessment survey within the only four facilities that provide care for the oncology patients in the West Bank and were filled by the direct health care providers. The results were expressing the fact that there is no palliative care service

  15. Role of codeine in palliative care. (United States)

    Prommer, Eric


    Codeine is designated as one of the essential medicines of palliative care for symptoms such as pain and diarrhea. Essential drugs for palliative care are drugs that are effective for the treatment of common symptoms in palliative medicine, easily available, and are affordable. Codeine is recommended for the management of mild to moderate pain and is available as a combination product or as a stand-alone opioid. It is a prodrug and exhibits an affinity to micro-opioid receptors 200 times lower than morphine. Codeine is metabolized in the liver to inactive metabolites, which account for 90 percent of the transformed product, and morphine, which accounts for 10 percent of the transformed product and provides the main analgesic effect. The production of morphine is dependent on cytochrome oxidase 2D6 enzyme activity, which may not be fully active in some populations. The purpose of this review is to examine the efficacy of codeine for common symptoms encountered in palliative medicine, which has led to its designation as an essential medicine for palliative care.

  16. Policy analysis: palliative care in Ireland.

    LENUS (Irish Health Repository)

    Larkin, P


    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.

  17. Home-based specialized palliative care in patients with advanced cancer

    DEFF Research Database (Denmark)

    Nordly, Mie; Vadstrup, Eva Soelberg; Sjøgren, Per


    OBJECTIVE: Due to an urgent need for specialized palliative care (SPC) for patients with advanced cancer, an overview of available information on organization and outcomes of home-based SPC would be valuable. Our systematic review aims to give an overview of available information on the organizat......OBJECTIVE: Due to an urgent need for specialized palliative care (SPC) for patients with advanced cancer, an overview of available information on organization and outcomes of home-based SPC would be valuable. Our systematic review aims to give an overview of available information...... on the organization and outcomes of home-based SPC for patients with advanced cancer. Outcomes related to place of death, survival time, quality of life, performance status, and symptom management are included. METHOD: A PICO process search strategy consisting of terms related to cancer, palliation, and home care...... for patients with advanced cancer, resulting in poor information and a lack of evidence. Generally, home-based SPC seems to have some positive effect on pain and dyspnea, but more high-quality studies are required....

  18. Current Surgical Aspects of Palliative Treatment for Unresectable Pancreatic Cancer

    Energy Technology Data Exchange (ETDEWEB)

    Karapanos, Konstantinos, E-mail:; Nomikos, Iakovos N. [Department of Surgery (B' Unit), METAXA Cancer Memorial Hospital, Piraeus (Greece)


    Despite all improvements in both surgical and other conservative therapies, pancreatic cancer is steadily associated with a poor overall prognosis and remains a major cause of cancer mortality. Radical surgical resection has been established as the best chance these patients have for long-term survival. However, in most cases the disease has reached an incurable state at the time of diagnosis, mainly due to the silent clinical course at its early stages. The role of palliative surgery in locally advanced pancreatic cancer mainly involves patients who are found unresectable during open surgical exploration and consists of combined biliary and duodenal bypass procedures. Chemical splanchnicectomy is another modality that should also be applied intraoperatively with good results. There are no randomized controlled trials evaluating the outcomes of palliative pancreatic resection. Nevertheless, data from retrospective reports suggest that this practice, compared with bypass procedures, may lead to improved survival without increasing perioperative morbidity and mortality. All efforts at developing a more effective treatment for unresectable pancreatic cancer have been directed towards neoadjuvant and targeted therapies. The scenario of downstaging tumors in anticipation of a future oncological surgical resection has been advocated by trials combining gemcitabine with radiation therapy or with the tyrosine kinase inhibitor erlotinib, with promising early results.

  19. Hope in palliative care: A longitudinal qualitative study

    NARCIS (Netherlands)

    Olsman, E.


    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 pr

  20. Piloting the role of a pharmacist in a community palliative care multidisciplinary team: an Australian experience

    Directory of Open Access Journals (Sweden)

    Box Margaret


    Full Text Available Abstract Background While the home is the most common setting for the provision of palliative care in Australia, a common problem encountered here is the inability of patient/carers to manage medications, which can lead to misadventure and hospitalisation. This can be averted through detection and resolution of drug related problems (DRPs by a pharmacist; however, they are rarely included as members of the palliative care team. The aim of this study was to pilot a model of care that supports the role of a pharmacist in a community palliative care team. A component of the study was to develop a cost-effective model for continuing the inclusion of a pharmacist within a community palliative care service. Methods The study was undertaken (February March 2009-June 2010 in three phases. Development (Phase 1 involved a literature review; scoping the pharmacist's role; creating tools for recording DRPs and interventions, a communication and education strategy, a care pathway and evidence based patient information. These were then implemented in Phase 2. Evaluation (Phase 3 of the impact of the pharmacist's role from the perspectives of team members was undertaken using an online survey and focus group. Impact on clinical outcomes was determined by the number of patients screened to assess their risk of medication misadventure, as well as the number of medication reviews and interventions performed to resolve DRPs. Results The pharmacist screened most patients (88.4%, 373/422 referred to the palliative care service to assess their risk of medication misadventure, and undertook 52 home visits. Medication reviews were commonly conducted at the majority of home visits (88%, 46/52, and a variety of DRPs (113 were detected at this point, the most common being "patient requests drug information" (25%, 28/113 and "condition not adequately treated" (22%, 25/113. The pharmacist made 120 recommendations in relation to her interventions. Fifty percent of online

  1. Young adult palliative care: challenges and opportunities. (United States)

    Clark, Jennifer K; Fasciano, Karen


    Young adulthood is a time of immense growth and possibilities. As a result, it is also a time when serious illness can have profound effects. This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. From the data, 2 primary themes emerged (1) ongoing young adult development not only generates unique biologic disease burdens and clinical treatment options but also requires frequent assessment and promotion and (2) binary health care systems often leave young adults without access to developmentally appropriate health care. Given its interdisciplinary approach, palliative care is uniquely poised to address the challenges known to caring for the seriously ill young adult.

  2. [Seeds of palliative care: nurses' discourse order]. (United States)

    da Silva, Karen Schein; Kruse, Maria Henriqueta Luce


    Palliative care is becoming a professional knowledge and performance field by means of the proposal of another "regimen of truths". Such fact can be observed in the broadening of palliative care services and in the increase of publications on the subject. This study aims at learning the discourses on palliative care that the nurses have conveyed in the nursing publications. For such purpose we approached the Cultural Studies, especially those inspired on Michel Foucault in order to analyze articles published in two national nursing periodicals from 1999 to 2007. Among the statements, we point out those that see the hospital as a site where the patient is divested of his individuality and identity and those that mention such care as capable of providing the family and the patient with the best quality of life possible during the death process.

  3. Subcutaneous drug administration in palliative care

    Directory of Open Access Journals (Sweden)

    Carmen Matoses Chirivella


    Full Text Available Objective: Develop a guide that compiles all the information available in the literature for healthcare staff on the administration of drugs subcutaneously in palliative care patients of the Hospital Unit of home. Method: It is designed a summary table of drugs likely to be administered subcutaneously in palliative care patients through the revision of the technical reports of the manufacturers and other literature published by scientific organizations, in addition to the literature search on Pubmed® and Micromedex®. Results: We have reviewed 65 drugs and a guide has been developed of recommendations depending on whether there is information of his administration by subcutaneous or, if on the contrary, its use is contraindicated. Conclusions: Although mainly manufacturers laboratories do not have data, information collected in this guide will allow the management of the subcutaneous route of some of the most commonly used medications in palliative care

  4. Palliative care. Some organisational considerations. (United States)

    Welshman, A


    Managing pain effectively is one of the biggest challenges in medicine, let alone when dealing with the dying patient and his family. For palliative care specialists this is a daily challenge. However, ''To cure when possible, to give comfort always'' is an empty credo if physicians don't use every weapon in the medical arsenal to relieve the suffering caused by chronic pain. It's of course the opioids: morphine, heroin, their synthetic derivatives and other narcotics, a class of medications that conjure up visions of drug addiction and narcotic squads. To say that opioids are stigmatised by such allusions is putting it mildly. An unhealthy proportion of doctors and patients alike are afraid to have anything to do with them, even in when facing their final stages of life. This is particularly so in the Mediterranean society. It is here in Italy that an effort must be made to educate both physicians and the general public, an arduous task to change a long standing belief which requires a quick cultural turn around. Those who refuse opioids because they are afraid of addiction, and the doctors who refuse to prescribe them out of fear or pure unwillingness to address an apprehensive attitude on behalf of his patient, need to be better informed. Most misconceptions about opioids have to do with terminology, because words like ''morphine, addiction, dependency'' and ''tolerance'' mean entirely different things in popular and medical parlance. Add to this the perceptions and attitudes the patient can have with this terminology which then can have a profound effect on the success or failure of a pain control programme. In fact, most people think that medication such as morphine are only for people who are dying and as a consequence is synonymous with death itself. Is this why Italian physicians are not prescribing morphine even though great efforts have been made recently by the Health Ministry to facilitate prescribing laws and costs? It is worthy of serious

  5. Palliative care and compound in household pets. (United States)

    Gaskins, Jessica L


    Palliative care is not a term solely used for humans when discussing health care; the term is also used when discussing veterinary patients. Pets are considered part of the family by pet owners, and they have a special relationship that only another pet owner can fully understand. This article discusses some of the healthcare problems that affect pets (and their owners), statistics on the most commonly used medications for veterinary patients, quality of life, and discussions on the veterinary pharmacist-owner-palliative pet relationship and how compounding pharmacists can prepare patient-specific medications.

  6. [Management of pain in palliative care]. (United States)

    Heiskanen, Tarja; Hamunen, Katri; Hirvonen, Outi


    Palliative pain management is usually successful, if the medication is strengthened in a stepwise manner in accordance with pain intensity, and initiation of a strong opioid is not delayed. Finding of a sufficiently effective dose of the opioid drug with simultaneous management of adverse effects requires continuous pain assessment and patient monitoring. In many cases it is possible to enhance analgesia by supplementing the medication with an antidepressant or an antiepileptic along with the opioid and paracetamol or the analgesic. Palliative radiotherapy will relieve tissue injury pain caused by bone metastases and soft tissue tumors as well as pain due to the possible nerve entrapments caused by them.

  7. Endoscopic palliation of malignant biliary stricture

    Institute of Scientific and Technical Information of China (English)

    Sanjay M Salgado; Monica Gaidhane; Michel Kahaleh


    Malignant biliary strictures often present late after the window for curative resection has elapsed. In such patients, the goal of therapy is typically focused on palliation. While historically, palliative measures were performed surgically, the advent of endoscopic intervention offers minimally invasive options to provide relief of symptoms, improve quality of life, and in some cases, increase survival of these patients. Some of these therapies, such as endoscopic biliary decompression, have become mainstays of treatment for decades, whereas newer modalities, including radiofrequency ablation, and photodynamic therapy offer additional options for patients with incurable biliary malignancies.

  8. 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


    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.

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

    NARCIS (Netherlands)

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


    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 t

  10. African Literature


    Recek, Denis


    The topic of this diploma is the formation and shaping of African literature. The first chapter is about the beginning of African literature. It describes oral literature and its transmission into written literature. Written African literature had great problems in becoming a part of world literature because of its diversity of languages and dialects. Christianity and Islam are mentioned as two religions which had a great impact on African literature. Colonialism is broadly described as an es...

  11. Communication as an approach to resolve conflict about the implementation of palliative care. (United States)

    Zhang, Zhe; Cheng, Wen-Wu


    The main aim of palliative care is to provide relief from pain and distressing symptoms and to offer psychological and spiritual support to enhance the quality of life. We present a case of an elderly Chinese patient with major depressive disorder who was a doctor himself, and through his experience of treating patients had become afraid about the complications of advanced disease. He wished to forego treatment, which was in conflict with those of his family. This report highlights the role of the palliative medical team in improving outcomes through enabling communication to occur between the family and the patient to achieve the best outcomes. This should lead to better training provision for the involved medical staff.

  12. Benefiting Africans

    Institute of Scientific and Technical Information of China (English)


    Along with thriving Sino-African economic and trade ties,Chinese companies have attached greater importance to their social responsibility to Africans.More than 2,000 sweaters woven by Chinese mothers were sent to orphans and disabled children in Kenya and four other African countries in September. This activity was launched by Hengyuanxiang,aleading Chinese wool manufacturer.

  13. Benefiting Africans

    Institute of Scientific and Technical Information of China (English)



    Along with thriving Sino-African economic and trade ties,Chinese companies have attached greater importance to their social responsibility to Africans.More than 2,000 sweaters woven by Chinese mothers were sent to orphans and disabled children in Kenya and four other African countries in September.This activity was launched by Hengyuanxiang,a leading Chinese wool manufacturer.

  14. Palliative and hospice care in gynecologic cancer: a review. (United States)

    Lopez-Acevedo, Micael; Lowery, William J; Lowery, Ashlei W; Lee, Paula S; Havrilesky, Laura J


    Despite the increasing availability of palliative care, oncology providers often misunderstand and underutilize these resources. The goals of palliative care are relief of suffering and provision of the best possible quality of life for both the patient and her family, regardless of where she is in the natural history of her disease. Lack of understanding and awareness of the services provided by palliative care physicians underlie barriers to referral. Oncologic providers spend a significant amount of time palliating the symptoms of cancer and its treatment; involvement of specialty palliative care providers can assist in managing the complex patient. Patients with gynecologic malignancies remain an ideal population for palliative care intervention. This review of the literature explores the current state of palliative care in the treatment of gynecologic cancers and its implications for the quality and cost of this treatment.

  15. Developing competencies for pediatric hospice and palliative medicine. (United States)

    Klick, Jeffrey C; Friebert, Sarah; Hutton, Nancy; Osenga, Kaci; Pituch, Kenneth J; Vesel, Tamara; Weidner, Norbert; Block, Susan D; Morrison, Laura J


    In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert clinician-educators in HPM defined the initial competency-based outcomes for HPM fellows (General HPM Competencies). Concurrently, these experts recognized and acknowledged that additional expertise in pediatric HPM would ensure that the competencies for pediatric HPM were optimally represented. To fill this gap, a group of pediatric HPM experts used a product development method to define specific Pediatric HPM Competencies. This article describes the development process. With the ongoing evolution of HPM, these competencies will evolve. As part of the Next Accreditation System, the Accreditation Council of Graduate Medical Education uses milestones as a framework to better define competency-based, measurable outcomes for trainees. Currently, there are no milestones specific to HPM, although the field is designing curricular milestones with multispecialty involvement, including pediatrics. These competencies are the conceptual framework for the pediatric content in the HPM milestones. They are specific to the pediatric HPM subspecialist and should be integrated into the training of pediatric HPM subspecialists. They will serve a foundational role in HPM and should inform a wide range of emerging innovations, including the next evolution of HPM Competencies, development of HPM curricular milestones, and training of adult HPM and other pediatric subspecialists. They may also inform pediatric HPM outcome measures, as well as standards of practice and performance for pediatric HPM interdisciplinary teams.

  16. In palliative cancer care symptoms mean everything

    NARCIS (Netherlands)

    Teunissen, S.C.C.M.


    The thesis aims to provide deeper insight into symptoms of cancer patients in palliative care, in order to improve the adequacy of decision-making for optimizing symptom control. Several aspects of symptoms and symptom management were investigated as were some aspects of communication and consultati

  17. Palliative care registers: infringement on human rights? (United States)

    Anthony-Pillai, Rosemarie


    A personal view made in light of the recent news article regarding a husband wanting to sue Addenbrooke's hospital over a Do Not Attempt Resuscitation decision. This article aims to highlight how the rolling out of cross boundary palliative care registers may be more at risk of infringing human rights.

  18. A test instrument for palliative care.

    NARCIS (Netherlands)

    Adriaansen, M.J.M.; Achterberg, T. van


    This article describes a methodological study concerning the development of a test instrument that can be used for measuring the effects of a course in palliative care on registered nurses and licensed practical nurses. This test instrument is comprised of two parts: an expertise and insight test an

  19. Nurses' perceptions of hospice palliative care volunteers. (United States)

    Claxton-Oldfield, Stephen; Hastings, Emily; Claxton-Oldfield, Jane


    A total of 50 nurses (hospital and home care) responded to a survey designed to measure: (1) their attitudes toward, and knowledge of, hospice palliative care volunteers; (2) the types of tasks they felt it was appropriate for volunteers to perform; and (3) how valuable they felt different members of the hospice palliative care team are. In addition, they were asked to respond to some open-ended questions (eg, "Do you feel that it is appropriate for hospice palliative care volunteers to know patient medical information?"). The nurses' responses to the "Attitude/Knowledge" part of the survey revealed that they generally held positive attitudes toward volunteers. The majority of the nurses felt that it was appropriate for volunteers to perform most of the tasks listed, except for hands-on patient care. Nurses rated the value of nurses, family members, doctors, and pharmacists significantly higher than volunteers. Fifty-three percent of the nurses felt that volunteers should know patient medical information, and 77% thought that volunteers should have the opportunity to provide input regarding patient care. Also, 75% of the nurses felt that volunteers made their jobs easier, and 56% felt that volunteers should be included in team meetings. When asked to list the topics covered in a hospice palliative care volunteer training program, 73% of the nurses indicated that they were not sure or did not know what topics were covered, indicating a lack of knowledge regarding volunteer training.

  20. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... 1:05:13 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 55,106 views 5: ... 3:34 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  1. Palliative care teams: effective through moral reflection.

    NARCIS (Netherlands)

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


    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

  2. Men of African Descent and Carcinoma of the Prostate Consortium (United States)

    The Men of African Descent and Carcinoma of the Prostate Consortium collaborates on epidemiologic studies to address the high burden of prostate cancer and to understand the causes of etiology and outcomes among men of African ancestry.

  3. Petroleum jelly (vaseline balls) for the treatment of constipation: a survey of hospice and palliative care practitioners. (United States)

    Tavares, Candice Noelle; Kimbrel, Jason M; Protus, Bridget McCrate; Grauer, Phyllis A


    Constipation is a common symptom at end of life, impacting patient outcomes and healthcare costs. Hospice and palliative care professionals often use practices based on anecdotal evidence. One such intervention is an oral preparation of petroleum jelly (OPJ), referred to as "Vaseline balls." This survey was designed to collect information regarding healthcare practitioners' knowledge and attitudes toward the use of OPJ for the management of constipation in hospice and palliative care. An online survey was distributed to physicians, nurse practitioners, nurses, and pharmacists who work with hospice and palliative care patients. A total of 67% (n=237/353) of responders reported being familiar with the use of OPJ. Results indicate there is a need for further clinical research on the use of OPJ to guide practice.

  4. Spiritually Based Intervention to Increase Colorectal Cancer Screening among African Americans: Screening and Theory-Based Outcomes from a Randomized Trial (United States)

    Holt, Cheryl L.; Litaker, Mark S.; Scarinci, Isabel C.; Debnam, Katrina J.; McDavid, Chastity; McNeal, Sandre F.; Eloubeidi, Mohamad A.; Crowther, Martha; Bolland, John; Martin, Michelle Y.


    Colorectal cancer screening has clear benefits in terms of mortality reduction; however, it is still underutilized and especially among medically underserved populations, including African Americans, who also suffer a disproportionate colorectal cancer burden. This study consisted of a theory-driven (health belief model) spiritually based…

  5. Impact of Goal Setting and Goal Attainment Methods on Asthma Outcomes: Findings From an Asthma Self-Management Intervention for African American Women (United States)

    Aaron, Micah; Nelson, Belinda W.; Kaltsas, Elena; Brown, Randall W.; Thomas, Lara J.; Patel, Minal R.


    Optimal use of goal-setting strategies in self-management efforts with high-risk individuals with asthma is not well understood. This study aimed to describe factors associated with goal attainment in an asthma self-management intervention for African American women with asthma and determine whether goal attainment methods proved beneficial to…

  6. Palliative nursing care for children and adolescents with cancer

    Directory of Open Access Journals (Sweden)

    Gilmer MJ


    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

  7. Randomised controlled trial of a new palliative care service: Compliance, recruitment and completeness of follow-up

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    Saleem Tariq


    Full Text Available Abstract Background Palliative care has been proposed for progressive non-cancer conditions but there have been few evaluations of service developments. We analysed recruitment, compliance and follow-up data of a fast track (or wait list control randomised controlled trial of a new palliative care service – a design not previously used to assess palliative care. Methods/Design An innovative palliative care service (comprising a consultant in palliative medicine, a clinical nurse specialist, an administrator and a psychosocial worker was delivered to people severely affected by multiple sclerosis (MS, and their carers, in southeast London. Our design followed the MRC Framework for the Evaluation of Complex Interventions. In phase II we conducted randomised controlled trial, of immediate referral to the service (fast-track versus a 12-week wait (standard best practice. Main outcome measures were: compliance (the extent the trial protocol was adhered to, recruitment (target 50 patients, attrition and missing data rates; trial outcomes were Palliative Care Outcome Scale and MS Impact Scale. Results 69 patients were referred, 52 entered the trial (26 randomised to each arm, 5 refused consent and 12 were excluded from the trial for other reasons, usually illness or urgent needs, achieving our target numbers. 25/26 fast track and 21/26 standard best practice patients completed the trial, resulting in 217/225 (96% of possible interviews completed, 87% of which took place in the patient's home. Main reasons for failure to interview and/or attrition were death or illness. There were three deaths in the standard best practice group and one in the fast-track group during the trial. At baseline there were no differences between groups. Missing data for individual questionnaire items were small (median 0, mean 1–5 items out of 56+ items per interview, not associated with any patient or carer characteristics or with individual questionnaires, but were

  8. Ensuring palliative medicine availability: the development of the IAHPC list of essential medicines for palliative care. (United States)

    De Lima, Liliana; Krakauer, Eric L; Lorenz, Karl; Praill, David; Macdonald, Neil; Doyle, Derek


    In response to a request from the World Health Organization (WHO), the International Association for Hospice and Palliative Care (IAHPC) developed a List of Essential Medicines for Palliative Care based on the consensus of palliative care workers from around the world. IAHPC designed a process of five steps, which included developing a set of ethical guidelines; identifying the most common symptoms in palliative care; identifying a list of medications to treat those symptoms; carrying out a survey using a modified Delphi process with participants from developed and developing countries; and convening a meeting of representatives from regional, international, and scientific organizations to develop the final list. Twenty-one symptoms were identified as the most common in palliative care, and an initial list of 120 medications resulted from the initial survey. Seventy-one participants from developing and developed countries responded to the Delphi survey and agreed on the effectiveness and safety of 48 medications for 18 of the 21 symptoms. The final step included discussions among representatives from 26 organizations, which led to the finalization of the list. The IAHPC List of Essential Medicines for Palliative Care includes 33 medications, of which 14 are already included in the WHO Model List. The participants agreed that there is too little evidence to recommend medications for five of the symptoms and suggested that further research be carried out to solve this need. The IAHPC and all the organizations involved in this process welcome suggestions on ways to continue to improve the List of Essential Medicines for Palliative Care and to improve access to medications for patients in need.

  9. Palliative percutaneous endoscopic gastrostomy placementfor gastrointestinal cancer: Roles, goals, and complications

    Institute of Scientific and Technical Information of China (English)

    Matthew Mobily; Jitesh A Patel


    Percutaneous endoscopic gastrostomy tube placementis an invaluable tool in clinical practice that has animportant role in the palliative care of patients withgastrointestinal cancer. While there is no extensivedata regarding the use of this procedure in patientswith gastrointestinal malignancy, inferences can bemade from the available information derived fromstudies of similar or mixed populations. Percutaneousendoscopic gastrostomy tubes can be used to provideenteral nutrition for terminal malignancies of the uppergastrointestinal tract as well as for decompressionof malignant obstructions. The rates of successfulplacement for cancer patients with either of theseindications are high, similar to those in mixed populations.There is no conclusive evidence that theprocedure will help patients reach nutritional goals forthose needing alimental supplementation. However, itis effective at relieving symptoms caused by malignantobstruction. A high American Society of Anesthesiologistphysical status score and an advanced tumor stagehave been shown to be independent predictors ofpoor outcomes following placement in cancer patients.This suggests the potential for similar outcomes inthe palliative care of patients with advanced stagegastrointestinal cancer who may be in relatively poorphysiologic condition. However, this potential should notpreclude its use in patients with terminal gastrointestinalcancer considering the high rate of successful tubeplacement, the possible benefits and the ultimate goalof comfort in palliative care.

  10. Palliative Care: Increasing the quality of life for patients and families… | NIH MedlinePlus the Magazine (United States)

    ... of this page please turn JavaScript on. Feature: Palliative Care Palliative Care: Increasing the quality of life for patients and families… Past Issues / Spring 2014 Table of Contents Palliative Care: Conversations Matter™ for Sick Children "Palliative Care: Conversations ...

  11. Palliative care in India: current progress and future needs. (United States)

    Khosla, Divya; Patel, Firuza D; Sharma, Suresh C


    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.

  12. Pharmacist credentialing in pain management and palliative care. (United States)

    Juba, Katherine M


    A credential is documented evidence of a pharmacist's qualifications; while credentialing is the method used to acquire, confirm, determine, and document a pharmacist's qualifications to practice. Voluntary credentials are important in clinical pharmacy specialties to ensure proficiency in caring for patients with complex pharmacotherapy needs. This article discusses current and future pharmacy pain management and palliative care credentialing opportunities. Pharmacists wishing to pursue voluntary pain management and palliative care credentialing may elect to take a multidisciplinary pain credentialing exam offered by the American Society of Pain Educators (ASPE) or American Academy of Pain Management (AAPM) and/or complete an American Society of Health System Pharmacists (ASHP) Postgraduate Year 2 (PGY2) pain management and palliative care pharmacy residency. A palliative care credentialing exam is not currently available to pharmacists. Efforts are underway within the pharmacy profession to standardize the board certification process, design a pain and palliative certificate program, and create a specialty pain management and palliative care board certification examination.

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

    Directory of Open Access Journals (Sweden)

    Divya Khosla


    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.

  14. The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease. (United States)

    Bertaud, Sophie; Lloyd, David F A; Laddie, Joanna; Razavi, Reza


    Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real risk of premature death on many occasions throughout their childhood. In this paper, we discuss the advantages of a fully integrated palliative care ethos in patients with CHD, offering the potential for improved symptom control, more informed decision-making and enhanced support for patients and their families throughout their disease trajectory. These core principles may be delivered alongside expert cardiac care via non-specialists within pre-existing networks or via specialists in paediatric palliative care when appropriate. By broaching these complex issues early-even from the point of diagnosis-an individualised set of values can be established around not just end-of-life but also quality-of-life decisions, with clear benefits for patients and their families regardless of outcome.

  15. Palliative Care Eases Symptoms, Enhances Lives | NIH MedlinePlus the Magazine (United States)

    ... of this page please turn JavaScript on. Feature: Palliative Care Palliative Care Eases Symptoms, Enhances Lives Past Issues / Spring 2014 ... pharmacists, nutritionists, and others. When do I need palliative care? Many adults and children living with serious diseases ...

  16. Perception of older adults receiving palliative care

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    Fernanda Laporti Seredynskyj


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

  17. Nutritional considerations for the palliative care patient. (United States)

    Shaw, Clare; Eldridge, Lucy


    Many palliative care patients experience nutritional problems as their conditions progress. This includes those with progressive neurological conditions, chronic obstructive pulmonary disease (COPD) as well as advanced cancer. Nutritional issues not only impact patients physically but also psychologically and can also have an effect on those caring for them. It is important that patients are screened appropriately and that one identifies what symptoms are potentially affecting their intake. Decisions should always be patient-centred. Nutritional interventions range from food modification and nutritional supplements, to more intense methods such as enteral or parenteral nutrition, and these may have ethical and legal considerations. This article explores the nutritional issues faced by palliative patients, the ethical issues supporting decision-making and the methods of nutritional support available.

  18. EPEC-O Self-Study - Cultural Considerations When Caring for African Americans (United States)

    The EPEC-O (Education in Palliative and End-of-Life Care for Oncology) Self-Study: Cultural Considerations When Caring for African Americans is a free comprehensive multimedia curricula for health professionals caring for persons with cancer and their families.

  19. Factors affecting rural volunteering in palliative care - an integrated review. (United States)

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


    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

  20. Palliative radiotherapy in plasma cell myeloma

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    Adamietz, I.A.; Schoeber, C.; Schulte, R.W.M.; Renner, K. (Medizinische Hochschule Hannover (Germany, F.R.). Klinik fuer Strahlentherapie und Spezielle Onkologie); Peest, D. (Medical School, Hannover (Germany). Department of Immunology and Transfusion Medicine)


    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.

  1. [Depression in palliative care: prevalence and assessment]. (United States)

    Julião, Miguel; Barbosa, António


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

  2. Palliative care in India: Situation assessment and future scope. (United States)

    Kar, S S; Subitha, L; Iswarya, S


    Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification, assessment and treatment of pain, and other problems - physical, psychosocial, and spiritual. It is estimated that in India the total number of people who need palliative care is likely to be 5.4 million people a year. Though palliative care services have been in existence for many years, India ranks at the bottom of the Quality of Death index in overall score. However there has been steady progress in the past few years through community-owned palliative care services. One of the key objectives of the National Programme for prevention and control of cancer, diabetes, cardiovascular diseases, and stroke is to establish and develop capacity for palliative and rehabilitative care. Community models for the provision of home-based palliative care is possible by involving community caregivers and volunteers supervised by nurses trained in palliative care. Training of medical officers and health care professionals, and sensitization of the public through awareness campaigns are vital to improve the scope and coverage of palliative care. Process of translating palliative care plan into action requires strong leadership, competent management, political support and integration across all levels of care.

  3. Palliative care in India: Situation assessment and future scope

    Directory of Open Access Journals (Sweden)

    S S Kar


    Full Text Available Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification, assessment and treatment of pain, and other problems – physical, psychosocial, and spiritual. It is estimated that in India the total number of people who need palliative care is likely to be 5.4 million people a year. Though palliative care services have been in existence for many years, India ranks at the bottom of the Quality of Death index in overall score. However there has been steady progress in the past few years through community-owned palliative care services. One of the key objectives of the National Programme for prevention and control of cancer, diabetes, cardiovascular diseases, and stroke is to establish and develop capacity for palliative and rehabilitative care. Community models for the provision of home-based palliative care is possible by involving community caregivers and volunteers supervised by nurses trained in palliative care. Training of medical officers and health care professionals, and sensitization of the public through awareness campaigns are vital to improve the scope and coverage of palliative care. Process of translating palliative care plan into action requires strong leadership, competent management, political support and integration across all levels of care.

  4. Palliative care and neurology: time for a paradigm shift. (United States)

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


    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.

  5. [Use of music in palliative care]. (United States)

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


    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

  6. 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


    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.

  7. Cancer rehabilitation and palliative care: critical components in the delivery of high-quality oncology services. (United States)

    Silver, Julie K; Raj, Vishwa S; Fu, Jack B; Wisotzky, Eric M; Smith, Sean Robinson; Kirch, Rebecca A


    respective roles in comprehensive oncology care, and highlights how these services can contribute complementary components of essential quality care. An understanding of how cancer rehabilitation and palliative care are aligned in goal setting, but distinct in approach may help facilitate earlier integration of both into the oncology care continuum-supporting efforts to improve physical, psychological, cognitive, functional, and quality of life outcomes in patients and survivors.

  8. The National Tumor Association Foundation (ANT: A 30 year old model of home palliative care

    Directory of Open Access Journals (Sweden)

    Bonazzi Valeria


    Full Text Available Abstract Background Models of palliative care delivery develop within a social, cultural, and political context. This paper describes the 30-year history of the National Tumor Association (ANT, a palliative care organization founded in the Italian province of Bologna, focusing on this model of home care for palliative cancer patients and on its evaluation. Methods Data were collected from the 1986-2008 ANT archives and documents from the Emilia-Romagna Region Health Department, Italy. Outcomes of interest were changed in: number of patients served, performance status at admission (Karnofsky Performance Status score [KPS], length of participation in the program (days of care provided, place of death (home vs. hospital/hospice, and satisfaction with care. Statistical methods included linear and quadratic regressions. A linear and a quadratic regressions were generated; the independent variable was the year, while the dependent one was the number of patients from 1986 to 2008. Two linear regressions were generated for patients died at home and in the hospital, respectively. For each regression, the R square, the unstandardized and standardized coefficients and related P-values were estimated. Results The number of patients served by ANT has increased continuously from 131 (1986 to a cumulative total of 69,336 patients (2008, at a steady rate of approximately 121 additional patients per year and with no significant gender difference. The annual number of home visits increased from 6,357 (1985 to 904,782 (2008. More ANT patients died at home than in hospice or hospital; this proportion increased from 60% (1987 to 80% (2007. The rate of growth in the number of patients dying in hospital/hospice was approximately 40 patients/year (p 40 increased. Mean days of care for patients with KPS > 40 exceeded mean days for patients with KPS Conclusions The ANT home care model of palliative care delivery has been well-received, with progressively growing numbers

  9. Management of hemichorea hemiballismus syndrome in an acute palliative care setting

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    Anuja Damani


    Full Text Available Hemichorea hemiballismus (HCHB is a rare and debilitating presentation of hyperglycemia and subcortical stroke. Early identification, proper assessment and management of HCHB can lead to complete symptom relief. We describe a case of HCHB presenting to a palliative care setting. A 63-year-old diabetic and hypertensive lady, with history of ovarian cancer presented to Palliative Medicine outpatient clinic with two days history of right HCHB. Blood investigations and brain imaging showed high blood sugar levels and lacunar subcortical stroke. Blood sugar levels were controlled with human insulin and Aspirin. Clopidogrel and Atorvastatin were prescribed for the management of lacunar stroke. HCHB reduced markedly post-treatment, leading to significant reduction in morbidity and improvement in quality of life. The symptoms completely resolved within one week of starting the treatment and the patient was kept on regular home and outpatient follow up for further monitoring. Acute palliative care (APC approach deals with the management of comorbidities and their complications along with supportive care. Prompt assessment and management of such complications lead to better patient outcomes.

  10. Management of hemichorea hemiballismus syndrome in an acute palliative care setting. (United States)

    Damani, Anuja; Ghoshal, Arunangshu; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann


    Hemichorea hemiballismus (HCHB) is a rare and debilitating presentation of hyperglycemia and subcortical stroke. Early identification, proper assessment and management of HCHB can lead to complete symptom relief. We describe a case of HCHB presenting to a palliative care setting. A 63-year-old diabetic and hypertensive lady, with history of ovarian cancer presented to Palliative Medicine outpatient clinic with two days history of right HCHB. Blood investigations and brain imaging showed high blood sugar levels and lacunar subcortical stroke. Blood sugar levels were controlled with human insulin and Aspirin. Clopidogrel and Atorvastatin were prescribed for the management of lacunar stroke. HCHB reduced markedly post-treatment, leading to significant reduction in morbidity and improvement in quality of life. The symptoms completely resolved within one week of starting the treatment and the patient was kept on regular home and outpatient follow up for further monitoring. Acute palliative care (APC) approach deals with the management of comorbidities and their complications along with supportive care. Prompt assessment and management of such complications lead to better patient outcomes.

  11. A proposed systems approach to the evaluation of integrated palliative care

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    Krueger Paul


    Full Text Available Abstract Background There is increasing global interest in regional palliative care networks (PCN to integrate care, creating systems that are more cost-effective and responsive in multi-agency settings. Networks are particularly relevant where different professional skill sets are required to serve the broad spectrum of end-of-life needs. We propose a comprehensive framework for evaluating PCNs, focusing on the nature and extent of inter-professional collaboration, community readiness, and client-centred care. Methods In the absence of an overarching structure for examining PCNs, a framework was developed based on previous models of health system evaluation, explicit theory, and the research literature relevant to PCN functioning. This research evidence was used to substantiate the choice of model factors. Results The proposed framework takes a systems approach with system structure, process of care, and patient outcomes levels of consideration. Each factor represented makes an independent contribution to the description and assessment of the network. Conclusions Realizing palliative patients' needs for complex packages of treatment and social support, in a seamless, cost-effective manner, are major drivers of the impetus for network-integrated care. The framework proposed is a first step to guide evaluation to inform the development of appropriate strategies to further promote collaboration within the PCN and, ultimately, optimal palliative care that meets patients' needs and expectations.

  12. Incorporating Palliative Care Concepts Into Nutrition Practice: Across the Age Spectrum. (United States)

    Schwartz, Denise Baird; Olfson, Kristina; Goldman, Babak; Barrocas, Albert; Wesley, John R


    A practice gap exists between published guidelines and recommendations and actual clinical practice with life-sustaining treatments not always being based on the patient's wishes, including the provision of nutrition support therapies. Closing this gap requires an interdisciplinary approach that can be enhanced by incorporating basic palliative care concepts into nutrition support practice. In the fast-paced process of providing timely and effective medical treatments, communication often suffers and decision making is not always reflective of the patient's quality-of-life goals. The current healthcare clinical ethics model does not yet include optimum use of advance directives and early communication between patients and family members and their healthcare providers about treatment choices, including nutrition support. A collaborative, proactive, integrated process in all healthcare facilities and across levels of care and age groups, together with measurable sustained outcomes, shared best practices, and preventive ethics, will be needed to change the culture of care. Implementation of a better process, including basic palliative care concepts, requires improved communication skills by healthcare professionals. Formalized palliative care consults are warranted early in complex cases. An education technique, as presented in this article, of how clinicians can engage in critical and crucial conversations early with patients and family members, by incorporating the patient's values and cultural and religious diversity in easily understood language, is identified as an innovative tool.

  13. A new quality assurance package for hospital palliative care teams: the Trent Hospice Audit Group model. (United States)

    Hunt, J; Keeley, V L; Cobb, M; Ahmedzai, S H


    Cancer patients in hospitals are increasingly cared for jointly by palliative care teams, as well as oncologists and surgeons. There has been a considerable growth in the number and range of hospital palliative care teams (HPCTs) in the United Kingdom. HPCTs can include specialist doctors and nurses, social workers, chaplains, allied health professionals and pharmacists. Some teams work closely with existing cancer multidisciplinary teams (MDTs) while others are less well integrated. Quality assurance and clinical governance requirements have an impact on the monitoring of such teams, but so far there is no standardised way of measuring the amount and quality of HPCTs' workload. Trent Hospice Audit Group (THAG) is a multiprofessional research group, which has been developing standards and audit tools for palliative care since the 1990s. These follow a format of structure-process-outcome for standards and measures. We describe a collaborative programme of work with HPCTs that has led to a new set of standards and audit tools. Nine HPCTs participated in three rounds of consultation, piloting and modification of standard statements and tools. The final pack of HPCT quality assurance tools covers: policies and documentation; medical notes review; questionnaires for ward-based staff. The tools measure the HPCT workload and casemix; the views of ward-based staff on the supportive role of the HPCT and the effectiveness of HPCT education programmes, particularly in changing practice. The THAG HPCT quality assurance pack is now available for use in cancer peer review.

  14. A national guideline for palliative sedation in the Netherlands

    NARCIS (Netherlands)

    Verkerk, Marian; van Wijlick, Eric; Legemaate, Johan; de Graeff, Alexander


    The first national guideline on palliative sedation in The Netherlands has been adopted by the General Board of the Royal Dutch Medical Association. By law, the physician is obliged to take this guideline into consideration. In this paper, we present the main principles of the guideline. Palliative

  15. Palliative care in low- and medium-resource countries. (United States)

    Basu, Arnab; Mittag-Leffler, Barbro Norrström; Miller, Kenneth


    Low- and medium-resource countries are facing a significant increase in the incidence of noncommunicable diseases such as cancer. Unfortunately, the majority of patients with cancer present with advanced disease, and disease-directed treatment may be unlikely to be effective and/or not available. Globally, there will be a growing need for palliative care services. There has been significant progress in the provision and integration of palliative care into the health care policy and systems. Nonetheless, palliative care services vary significantly between regions of the world and also between countries in the same region. Some common barriers to care include the lack of a trained workforce to provide palliative care, lack of availability of opioids or the restriction of their use, cultural attitudes of physicians and patients, and also funding. Despite these challenges, there are examples of low- and medium-resource countries that are providing excellent palliative care that is being integrated into the health care system and the cancer care continuum. This article provides an overview of the progress in providing palliative care in low- and medium-resource countries. In addition, more specific information is provided on palliative care in low-resource countries in Latin America, Asia, and Africa. Finally, a more personal perspective is presented on the development of palliative care in Ethiopia, as an example.

  16. The Evidence Behind Integrating Palliative Care Into Oncology Practice. (United States)

    Dailey, Erin


    Palliative care services provided alongside traditional oncology care have been shown to be beneficial to patients and families. This article provides a brief history of palliative care, a pathway to implementing these services into currently established oncology programs, and a brief discussion of common barriers.

  17. The multidisciplinary team in palliative care: A case reflection

    Directory of Open Access Journals (Sweden)

    Liza Bowen


    Full Text Available This essay is a reflection on the multidisciplinary team in palliative care, from the perspective of a final year MBBS student from the UK spending one month with an Indian pain and palliative care team at Institute Rotary Cancer Hospital (IRCH, AIIMS, New Delhi.

  18. Pastoral care, spirituality, and religion in palliative care journals.

    NARCIS (Netherlands)

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


    With the growth and development of palliative care, interest in pastoral care, spirituality, and religion also seems to be growing. The aim of this article is to review the topic of pastoral care, spirituality, and religion appearing in the journals of palliative care, between January 1984 and Janua

  19. Integrating palliative care with usual care of diabetic foot wounds. (United States)

    Dunning, Trisha


    Palliative care is a philosophy and a system for deciding care and can be used alone or integrated with usual chronic disease care. Palliative care encompasses end-of-life care. Palliative care aims to enhance quality of life, optimize function and manage symptoms including early in the course of chronic diseases. The purposes of this article are to outline palliative care and discuss how it can be integrated with usual care of diabetic foot wounds. Many people with diabetes who have foot wounds also have other comorbidities and diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, functional status, surgical risk and quality of life. Two broad of diabetic foot disease exist: those likely to heal but who could still benefit from integrated palliative care such as managing pain and those where healing is unlikely where palliation can be the primary focus. People with diabetes can die suddenly, although the life course is usually long with periods of stable and unstable disease. Many health professionals are reluctant to discuss palliative care or suggest people to document their end-of-life care preferences. If such preferences are not documented, the person might not achieve their desired death or place of death and health professionals and families can be confronted with difficult decisions. Palliative care can be integrated with usual foot care and is associated with improved function, better quality of life and greater patient and family satisfaction.

  20. Sammenhængende palliative forløb

    DEFF Research Database (Denmark)

    Vedsted, Peter; Åbom, Birgit; Jespersen, Bodil Abild;


    Almen praksis har altid spillet en central rolle i palliative forløb. I de senere år er der sket en udbygning af den specialiserede palliative indsats, og det stiller krav om en integreret og sammenhængende indsats med shared care, klar ansvarsfordeling og let tilgængelige kommunikationslinjer...

  1. The palliative care interdisciplinary team: where is the community pharmacist? (United States)

    O'Connor, Moira; Pugh, Judith; Jiwa, Moyez; Hughes, Jeff; Fisher, Colleen


    Palliative care emphasizes an interdisciplinary approach to care to improve quality of life and relieve symptoms. Palliative care is provided in many ways; in hospices, hospital units, and the community. However, the greatest proportion of palliative care is in the community. In hospice and palliative care units in hospitals, clinical pharmacists are part of the interdisciplinary team and work closely with other health care professionals. Their expertise in the therapeutic use of medications is highly regarded, particularly as many palliative care patients have complex medication regimens, involving off-label or off-license prescribing that increases their risk for drug-related problems. However, this active involvement in the palliative care team is not reflected in the community setting, despite the community pharmacist being one of the most accessible professionals in the community, and visiting a community pharmacist is convenient for most people, even those who have limited access to private or public transport. This may be due to a general lack of understanding of skills and knowledge that particular health professionals bring to the interdisciplinary team, a lack of rigorous research supporting the necessity for the community pharmacist's involvement in the team, or it could be due to professional tensions. If these barriers can be overcome, community pharmacists are well positioned to become active members of the community palliative care interdisciplinary team and respond to the palliative care needs of patients with whom they often have a primary relationship.

  2. The Culture of General Palliative Nursing Care in Medical Departments

    DEFF Research Database (Denmark)

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


    and the nurses' reflections on GPNC: (1) GPNC provided in a treatment setting, (2) transition to loving care and the licence to perform palliative care (PC) and (3) potential for team improvement. Conclusions: GPNC as a culture in medical departments seemed to be embedded in a setting not suited for dying...... patients. Palliative care was still practised according to the transition model of care, sharply dividing curative from palliative care, and was inappropriately conducted in a fragmented and individual-based way. The term ‘loving care’ was used as a ‘gate-opener’ to provide palliative care for the dying......Background: In many countries, approximately half of the population dies in hospital, making general palliative nursing care (GPNC) a core nursing task. GPNC in the hospital setting is described as challenging, however little is known about its actual practice. Aim: To explore the GPNC culture...

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

    DEFF Research Database (Denmark)

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


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

  4. Associations between successful palliative cancer pathways and community nurse involvement

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjoern; Vedsted, Peter; Olesen, Frede


    ABSTRACT: BACKGROUND: Most terminally ill cancer patients and their relatives wish that the patient dies at home. Community nurses (CNs) are often frontline workers in the patients' homes and CN involvement may be important in attaining successful palliative pathways at home.The aim of the present...... were used to obtain data on CNs' efforts, GP-questionnaires were used to obtain data on pathway characteristics and relatives answered questionnaires to evaluate the palliative pathway at home. Questionnaires addressed the palliative pathway of a total of 599 deceased cancer patients. Associations...... between bereaved relatives' evaluation of palliative pathways at home and place of death and CN involvement were analysed. RESULTS: 'A successful palliative pathway at home' was positively associated with home-death and death at a nursing home compared with death at an institution. No significant...

  5. Cooperating with a palliative home-care team

    DEFF Research Database (Denmark)

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


    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...... 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....... Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance...

  6. Prospective evaluation of quality of life effects in patients undergoing palliative radiotherapy for brain metastases

    Directory of Open Access Journals (Sweden)

    Steinmann Diana


    Full Text Available Abstract Background Recently published results of quality of life (QoL studies indicated different outcomes of palliative radiotherapy for brain metastases. This prospective multi-center QoL study of patients with brain metastases was designed to investigate which QoL domains improve or worsen after palliative radiotherapy and which might provide prognostic information. Methods From 01/2007-01/2009, n=151 patients with previously untreated brain metastases were recruited at 14 centers in Germany and Austria. Most patients (82 % received whole-brain radiotherapy. QoL was measured with the EORTC-QLQ-C15-PAL and brain module BN20 before the start of radiotherapy and after 3 months. Results At 3 months, 88/142 (62 % survived. Nine patients were not able to be followed up. 62 patients (70.5 % of 3-month survivors completed the second set of questionnaires. Three months after the start of radiotherapy QoL deteriorated significantly in the areas of global QoL, physical function, fatigue, nausea, pain, appetite loss, hair loss, drowsiness, motor dysfunction, communication deficit and weakness of legs. Although the use of corticosteroid at 3 months could be reduced compared to pre-treatment (63 % vs. 37 %, the score for headaches remained stable. Initial QoL at the start of treatment was better in those alive than in those deceased at 3 months, significantly for physical function, motor dysfunction and the symptom scales fatigue, pain, appetite loss and weakness of legs. In a multivariate model, lower Karnofsky performance score, higher age and higher pain ratings before radiotherapy were prognostic of 3-month survival. Conclusions Moderate deterioration in several QoL domains was predominantly observed three months after start of palliative radiotherapy for brain metastases. Future studies will need to address the individual subjective benefit or burden from such treatment. Baseline QoL scores before palliative radiotherapy for brain metastases may

  7. The role of embolization in palliative care. (United States)

    Broadley, K E; Kurowska, A; Dick, R; Platts, A; Tookman, A


    Transcatheter arterial embolization (TCAE) is a well recognized radiological technique that has been used for over 25 years. It is a method of diminishing blood flow through selected vessels by inserting haemostatic material under angiographic control. The procedure is performed under local anaesthetic through a femoral or, occasionally, an axillary approach. We present our experience of the use of TCAE in the management of pain and haemorrhage in three hospice inpatients in whom other options had been exhausted. The use of TCAE as a technique for the palliation of these symptoms in the hospice setting is discussed.

  8. [Palliative (symptomatic) care of (imminently) dying patients]. (United States)

    Hänninen, Juha; Hamunen, Katri; Laakkonen, Marja-Liisa; Laukkala, Tanja; Lehto, Juho; Matila, Ari; Rahko, Eeva; Saarto, Tiina; Tohmo, Harri; Vuorinen, Eero


    The updated Current Care Guideline focuses on medical symptom treatment when curative treatment is no longer possible. Palliative care should be available to all dying patients at all health care levels. Pain should be treated prophylactically. Opioids are effective in cancer pain and should be chosen for moderate or severe pain in line with the WHO pain ladder. Treatment options for symptoms which call for acute interventions, such as intracranial hypertension, and options for dyspnoea, delirium, gastro-intestinal symptoms, ascites, dehydration and end-of-life treatment of elderly and demented patients are described.

  9. Palliative wound care: principles of care. (United States)

    Dale, Barbara; Emmons, Kevin R


    Home care nursing occurs in a complex care environment. Nurses working in this setting care for a wide array of individuals who often are sicker and more complex than ever before. The high prevalence of wounds among these individuals requires that home care nurses have a certain level of knowledge to provide excellent care. Many times, individuals with wounds do not have the capacity to heal or are burdened with numerous symptoms affecting quality of life. In these cases, the home care nurse must understand concepts of palliative wound care to alleviate symptoms with the goal of improving quality of life.

  10. EPEC-O for African Americans - Module 13 AA - Advance Care Planning (United States)

    The thirteenth module of the EPEC-O (Education in Palliative and End-of-Life Care for Oncology) Self-Study: Cultural Considerations When Caring for African Americans explores the attitudes and practices of African Americans related to completion of advance directives, and recommends effective strategies to improve decision-making in the setting of serious, life-threatening illness, in ways that augment patient autonomy and support patient-centered goal-setting and decision-making among African American patients and their families.

  11. PSA-Based Screening Outcomes, Dietary Heterocyclic Amine Exposure, and Prostate Cancer Risk in African Americans: Annual Report (Year 1 of 3)

    Energy Technology Data Exchange (ETDEWEB)

    Bogen, K T


    Prostate cancer (PC) is the second leading cause of male U.S. cancer deaths, with African-Americans having the highest rate of PC mortality worldwide, as well as more abnormal results from screening tests that correlate with current or eventual PC. A 3-year prospective clinic-based study is studying the performance of current (PSA and DRE) vs. (% free PSA) clinical biomarkers of PC risk in 400 African-American men 50 to 70 years of age who undergo PC screening in Oakland, CA (East Bay San Francisco area), as well as possible association of PC screening results for these men with their dietary exposures to the cancer-causing heterocyclic amine, 2-amino-1-methyl-6-phenylimidazo[4,5-b]pyridine (PhIP) that forms when meat is cooked. This study expands an ongoing NIH-funded study (by the same research team) to add a new %-free-PSA test, results of which will be compared with PSA/DRE results and PhIP exposures estimated by dietary interviews. For 392 men studied under the NIH protocol, an odds ratio (95% CL) of 32 (3.2, 720) for highly elevated PSA ({ge}20 ng/mL) was observed in the highest 15% vs. the lower 50% of estimated daily PhIP intakes. Approximately 100 additional men have completed participation in the expanded NIH/DOD-supported study. This study will help define the potential value of improved screening and dietary/behavioral intervention to reduce PC risk, namely, prevention of PhIP intake by avoiding overcooked meats.

  12. Improved antiretroviral treatment outcome in a rural African setting is associated with cART initiation at higher CD4 cell counts and better general health condition

    Directory of Open Access Journals (Sweden)

    Geubbels Eveline


    Full Text Available Abstract Background Data on combination antiretroviral therapy (cART in remote rural African regions is increasing. Methods We assessed prospectively initial cART in HIV-infected adults treated from 2005 to 2008 at St. Francis Designated District Hospital, Ifakara, Tanzania. Adherence was assisted by personal adherence supporters. We estimated risk factors of death or loss to follow-up by Cox regression during the first 12 months of cART. Results Overall, 1,463 individuals initiated cART, which was nevirapine-based in 84.6%. The median age was 40 years (IQR 34-47, 35.4% were males, 7.6% had proven tuberculosis. Median CD4 cell count was 131 cells/μl and 24.8% had WHO stage 4. Median CD4 cell count increased by 61 and 130 cells/μl after 6 and 12 months, respectively. 215 (14.7% patients modified their treatment, mostly due to toxicity (56%, in particular polyneuropathy and anemia. Overall, 129 patients died (8.8% and 189 (12.9% were lost to follow-up. In a multivariate analysis, low CD4 cells at starting cART were associated with poorer survival and loss to follow-up (HR 1.77, 95% CI 1.15-2.75, p = 0.009; for CD4 100 cells/μl. Higher weight was strongly associated with better survival (HR 0.63, 95% CI 0.51-0.76, p Conclusions cART initiation at higher CD4 cell counts and better general health condition reduces HIV related mortality in a rural African setting. Efforts must be made to promote earlier HIV diagnosis to start cART timely. More research is needed to evaluate effective strategies to follow cART at a peripheral level with limited technical possibilities.

  13. Japanese Bereaved Family Members' Perspectives of Palliative Care Units and Palliative Care: J-HOPE Study Results. (United States)

    Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Shoji, Ayaka; Chiba, Yurika; Miyazaki, Tamana; Tsuneto, Satoru; Shima, Yasuo


    The study purpose was to understand the perspectives of bereaved family members regarding palliative care unit (PCU) and palliative care and to compare perceptions of PCU before admission and after bereavement. A cross-sectional questionnaire survey was conducted, and the perceptions of 454 and 424 bereaved family members were obtained regarding PCU and palliative care, respectively. Family members were significantly more likely to have positive perceptions after bereavement (ranging from 73% to 80%) compared to before admission (ranging from 62% to 71%). Bereaved family members who were satisfied with medical care in the PCU had a positive perception of the PCU and palliative care after bereavement. Respondents younger than 65 years of age were significantly more likely to have negative perceptions of PCU and palliative care.

  14. Palliative care in cancer: managing patients' expectations. (United States)

    Ghandourh, Wsam A


    Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of patients receiving palliative radiation or chemotherapy hold unrealistic hopes of their cancer being cured by such therapies, which can affect their ability to make well-informed decisions about treatment options. This review aimed to explore this discrepancy between patients' and physicians' expectations by investigating three primary issues: (1) the factors associated with patients developing unrealistic expectations; (2) the implications of having unrealistic hopes and the effects of raising patients' awareness about prognosis; and (3) patients' and caregivers' perspective on disclosure and their preferences for communication styles. Relevant studies were identified by searching electronic databases including Pubmed, EMBASE and ScienceDirect using multiple combinations of keywords, which yielded a total of 65 articles meeting the inclusion criteria. The discrepancy between patients' and doctors' expectations was associated with many factors including doctors' reluctance to disclose terminal prognoses and patients' ability to understand or accept such information. The majority of patients and caregivers expressed a desire for detailed prognostic information; however, varied responses have been reported on the preferred style of conveying such information. Communication styles have profound effects on patients' experience and treatment choices. Patients' views on disclosure are influenced by many cultural, psychological and illness-related factors, therefore individuals' needs must be considered when conveying prognostic information. More research is needed to identify communication barriers and the interventions that could be used to increase patients' satisfaction with palliative care.

  15. Middle East experience in palliative care. (United States)

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


    Palliative Care (PC) is still a relatively new concept in the Middle East (ME). It was first introduced in Saudi Arabia in 1992 and only recently in countries such as Qatar, Bahrain, and the UAE. Although the majority of Middle-Eastern countries, including Palestine, Iraq, Oman and Lebanon are in the capacity building phase, others such as Saudi and Jordan already have localized provision. In the absence of any of the ME countries approaching integration with the mainstream service providers, Saudi Arabia and Jordan are currently setting examples of achievement in the field. There are still countries with little or no known Palliative Care activity (Yemen and Syria). Political issues, scarcity of resources, and lack of education and awareness seem to be the common factors restricting the progress of this field in most countries. In order to improve the suboptimal PC services in the ME, emphasis should be directed toward providing formal education to professionals and raising awareness of the public. It is also necessary to put all differences aside and develop cross-border collaborations, whether through third party organizations such as the Middle East Cancer Consortium (MECC) or otherwise. This review compiles the available literature on the history and progress of the field of PC in most ME countries, while pointing out the major obstacles encountered by the active parties of each country.

  16. Planning elderly and palliative care in Montenegro

    Directory of Open Access Journals (Sweden)

    Mark McCarthy


    Full Text Available Introduction: Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care. Description: The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience. Discussion: Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment. Conclusion: Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management.

  17. Poverty Reduction in India through Palliative Care: A Pilot Project (United States)

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


    Introduction: 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. Context: This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. Aims: 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

  18. The SMILE Program: Does Timing and Dosing of Nurse Home Visits Matter in Reducing Adverse Birth Outcomes for African American Women (United States)


    The dependent variables were birth outcomes, indexed by birth weight, gestational age at birth, and presence of birth anomalies as defined below...aspiration, prenatal drug exposure, anemia , sickle cell trait, or identification of any other adverse health condition to include premature birth


    Directory of Open Access Journals (Sweden)

    I. P. Рonomareva


    Full Text Available The purpose of the study is to identify the main problems and prospects of development of palliative care in geriatrics at the present stage. Method of research was to analyze the printed and electronic databases that meet the stated issues. The results of the study highlight the problems of the development of palliative care in geriatric practice: the lack of a developed procedure of rendering palliative care and adequate elderly patient selection criteria, the lack of trained professional staff. The main prospects-association of palliative practices and concepts of modern geriatrics required specialized geriatric assessment and the provision of clinical, medical, social and socio-psychological geriatric syndromes. While promising option for the development of palliative care geriatrics is the integration into the existing health care system, acceptance of the fact that it is a part of the specialized geriatric care. This requires the involvement and training of not only specialists with medical education, but also persons without medical training from among social workers and volunteers working in palliative care. Therefore, the obtained data allowed to conclude that topical is the development of palliative care in geriatrics, taking into account not only clinical but medico-social, socio-psychological features.

  20. Palliative care in home care: perceptions of occupational therapists

    Directory of Open Access Journals (Sweden)

    Séfora Gomez Portela


    Full Text Available This research aimed at understanding and reflecting on the perceptions of occupational therapists regarding the implementation of palliative care in home care. This is an exploratory, qualitative study, through semi-structured interviews, conducted in the second semester of 2012 with eight occupational therapists with experience in palliative care in the city of São Paulo. Content analysis identified four themes: characterization and professional trajectory in the field, understanding the concepts of palliative care, home care and palliative care, and occupational therapy and palliative care in home care. The results suggest that the role of the occupational therapist in this field has taken place at different levels of health care, being addressed to people with varying needs. The use of the concept of palliative care by the interviewees exceeds the notion of end of life, following the changes in the epidemiological transition. They understand that professional services follow the trend of national palliative care services with focus on specialized levels, but manifest the importance of its implementation in primary and home care. Among the barriers to practice, they identified the complexity of “being at home “, peculiarities of palliative care with high cost demands, lack of infrastructure and implementation of the current policy. Professional training and scientific roduction in the area were viewed as inadequate, although they identified a call for change. The interviewees recognized palliative care in home care as a strong professional field, but one still requiring study and discussions regarding its limits and conditions of implementation, especially in the Unified Health System.

  1. Outcomes in African-Americans Undergoing Cardioverter Defibrillators Implantation for Primary Prevention of Sudden Cardiac Death: Findings from The Prospective Observational Study of Implantable Cardioverter-Defibrillators (PROSE-ICD) (United States)

    Zhang, Yiyi; Kennedy, Robert; Blasco-Colmenares, Elena; Butcher, Barbara; Norgard, Sanaz; Eldadah, Zayd; Dickfeld, Timm; Ellenbogen, Kenneth A.; Marine, Joseph E.; Guallar, Eliseo; Tomaselli, Gordon F.; Cheng, Alan


    Background Implantable cardioverter defibrillators (ICDs) reduce the risk of death in patients with left ventricular dysfunction. Little is known regarding the benefit of this therapy in African-Americans (AA). Objective To determine the association between African-American race and outcomes in a cohort of primary prevention cardioverter defibrillators (ICD) patients. Methods We conducted a prospective cohort study of patients with systolic heart failure who underwent ICD implantation for primary prevention of sudden cardiac death. The primary endpoint was appropriate ICD shock defined as a shock for rapid ventricular tachyarrhythmias. The secondary endpoint was all-cause mortality. Results There were 1,189 patients (447 AAs and 712 non-AAs) enrolled. Over a median follow-up of 5.1 years, a total of 137 patients experienced an appropriate ICD shock, and 343 died (294 of whom died without receiving an appropriate ICD shock). The multivariate adjusted hazard ratios (95% CI) comparing AAs vs. non-AAs were 1.24 (0.96 to 1.59) for all-cause mortality, 1.33 (1.02, 1.74) for all-cause mortality without receiving appropriate ICD shock, and 0.78 (0.51, 1.19) for appropriate ICD shock. Ejection fraction, diabetes, and hypertension appeared to explain 24.1% (10.1 to 69.5%), 18.7% (5.3 to 58.0%), and 13.6% (3.8 to 53.6%) of the excess risk of mortality in AAs, with a large proportion of the mortality difference remains unexplained. Conclusions In patients with primary prevention ICDs, AAs had an increased risk of dying without receiving an appropriate ICD shock compared to non-AAs. PMID:24793459

  2. A randomised, multicentre clinical trial of specialised palliative care plus standard treatment versus standard treatment alone for cancer patients with palliative care needs: the Danish palliative care trial (DanPaCT) protocol

    DEFF Research Database (Denmark)

    Johnsen, Anna Thit; Damkier, Anette; Vejlgaard, Tove Bahn;


    Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems.The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report...... palliative needs in a screening, will benefit from being referred to 'early SPC'....

  3. Palliative Care as a Standard of Care in Pediatric Oncology. (United States)

    Weaver, Meaghann S; Heinze, Katherine E; Kelly, Katherine P; Wiener, Lori; Casey, Robert L; Bell, Cynthia J; Wolfe, Joanne; Garee, Amy M; Watson, Anne; Hinds, Pamela S


    The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members.

  4. Fifty reasons to love your palliative care pharmacist. (United States)

    Walker, Kathryn A; Scarpaci, Laura; McPherson, Mary Lynn


    Pharmacists have much to offer in caring for patients with an advanced illness. To celebrate the role of pharmacists in palliative care, we wanted to share 50 excellent reasons to love your pharmacist. This list was compiled by 3 pharmacists specializing in end-of-life care spanning from inpatient palliative care to home-based hospice. Our goal is to increase awareness among other hospice and palliative care practitioners by recognizing the skills pharmacists contribute in caring for patients at the end of life. We divided the list into categories: provision of pharmaceuticals, optimizing medication regimens, education and drug information, patient safety, and administration/formulary management.

  5. Inhibition of adaptive immune responses leads to a fatal clinical outcome in SIV-infected pigtailed macaques but not vervet African green monkeys.

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    Jörn E Schmitz


    Full Text Available African green monkeys (AGM and other natural hosts for simian immunodeficiency virus (SIV do not develop an AIDS-like disease following SIV infection. To evaluate differences in the role of SIV-specific adaptive immune responses between natural and nonnatural hosts, we used SIV(agmVer90 to infect vervet AGM and pigtailed macaques (PTM. This infection results in robust viral replication in both vervet AGM and pigtailed macaques (PTM but only induces AIDS in the latter species. We delayed the development of adaptive immune responses through combined administration of anti-CD8 and anti-CD20 lymphocyte-depleting antibodies during primary infection of PTM (n = 4 and AGM (n = 4, and compared these animals to historical controls infected with the same virus. Lymphocyte depletion resulted in a 1-log increase in primary viremia and a 4-log increase in post-acute viremia in PTM. Three of the four PTM had to be euthanized within 6 weeks of inoculation due to massive CMV reactivation and disease. In contrast, all four lymphocyte-depleted AGM remained healthy. The lymphocyte-depleted AGM showed only a trend toward a prolongation in peak viremia but the groups were indistinguishable during chronic infection. These data show that adaptive immune responses are critical for controlling disease progression in pathogenic SIV infection in PTM. However, the maintenance of a disease-free course of SIV infection in AGM likely depends on a number of mechanisms including non-adaptive immune mechanisms.

  6. Nurses experiences in palliative care of terminally-ill HIV patients in a level 1 district hospital

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    Nokwanda E. Bam


    Full Text Available Background: Whilst the discourse of palliative care in HIV management is largely documented and regarded as being an essential component, various authors have further argued that within the context of HIV care in sub-Saharan Africa, palliative care and exploration of the dimensions thereof is largely lacking. This article presents the lived experiences of nurses involved in palliative care, thus providing the perspective of nurses and the multi-faceted dimensions of the nature of caring inherent. Objectives: This study explored the respondents’ understanding of the concepts ‘caring’ and ‘terminal patient’ and described the experiences of nurses caring for terminally-ill patients with HIV and how these experiences influence the nature of care rendered. Methods: Qualitative research using Husserl’s approach of phenomenology design underpinned the study and Giorgi’s steps of analysis were used to make meaning of the data. Results: The concept ‘caring’ was experienced by the nurses as transforming the patients’ quality of life through supportive care and hope for life. Palliative care made the nurses conscious of their own mortality, enabling them to be more sensitive, compassionate and dedicated to caring for their patients. The findings described the social networking that enabled nurses to collaborate with colleagues in the interdisciplinary teams and shared knowledge, skills and support within the palliative care team in order to optimise patient outcomes. Conclusion: Nurses with prolonged involvement in caring for terminally-ill patients with HIV experienced helplessness and emotional stress. Recommendations based on the results are that training in psychological and holistic care of the patient, professional counselling and stress management services are needed to support the nurse in this context.

  7. Living on Hold in Palliative Cancer Care

    Directory of Open Access Journals (Sweden)

    Anna Sandgren, RN, M.Sc.N., Ph.D. Student


    Full Text Available The aim of this study was to develop a classic grounded theory of palliative cancer patients and their relatives in the context of home care. We analyzed interviews and data related to the behaviour of both patients and relatives. “Living on hold” emerged as the pattern of behaviour through which the patients and relatives deal with their main concern, being put on hold. Living on Hold involves three modes: Fighting, Adjusting and Surrendering. Mode being may change during a trajectory depending on many different factors. There are also different triggers that can start a reconciling process leading to a change of mode. This means that patients and relatives can either be in the same mode or in different modes simultaneously. More or less synchronous modes may lead to problems and conflicts within the family, or with the health professionals.

  8. Ectopia cordis: a novel palliative care technique. (United States)

    Berry, Mary Judith; Saito-Benz, Maria; Klein, Tisha; Bowkett, Brendon; Richardson, Vaughan F


    Complete ectopia cordis in the newborn represents a significant management challenge. There are minimal data available to inform optimal clinical care for those infants with coexisting complex congenital heart disease who are therefore not candidates for surgical intervention. The exteriorisation of the heart and absence of the pericardial sac requires meticulous wound care to prevent desiccation of the myocardium and to minimise infection risk. Additionally, the technique selected must address the risk of occlusion of the cardiac vascular pedicle and abrasion between the mobile myocardium and dressing surface. We report a novel approach to wound management and integrated palliative care that enabled community-based care. Our patient, a full-term male infant with complete ectopia cordis was born in good condition by assisted vaginal delivery. He was discharged from hospital on day 8 and was cared for in the community until his demise from cardiac failure on day 15.

  9. Recognizing depression in palliative care patients. (United States)

    Noorani, Nazneen Hyder; Montagnini, Marcos


    Clinically significant depression is a common psychiatric disorder in patients with advanced and terminal diseases. Depression is often unrecognized and untreated and it causes major suffering to patients and families. Having adequate knowledge and skills to properly recognize depression in patients with advanced illnesses is essential for providing comprehensive end-of-life care. The objective of this paper is to review the key elements of the assessment of depression in palliative care patients. We also discuss the challenges of making the diagnosis, review the risk factors associated with depression and describe the features of the most common assessment tools that have been studied in this population. Finally, we highlight how to differentiate depression from normal grief, as the overlap between these conditions imposes a diagnostic challenge.

  10. African America. (United States)

    Brodie, Carolyn S.; Brown, Gloria


    Presents an annotated bibliography of quality materials by and about African Americans in the areas of poetry, music, folklore, women, picture books, history/collective biography, authors, and professional materials. Activities are suggested in each area for Black History Month. (LRW)

  11. The value of data collection within a palliative care program. (United States)

    Kamal, Arif H; Currow, David C; Ritchie, Christine; Bull, Janet; Wheeler, Jane L; Abernethy, Amy P


    Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly competitive environment. Mounting expectations by patients, hospitals, and payers and inevitable pay-for-performance paradigms have transitioned data collection procedures from novel projects to expected standard operation within usual palliative care delivery. We present types of data to collect, published guides for data collection, and how data can inform quality, value, and research within a palliative care organization. Our experiences with the Quality Data Collection Tool (QDACT) in the Carolinas Palliative Care Consortium to collect data on quality have led to valuable lessons learned in creating a data collection system. Suggested steps in forming data-sharing collaborations and building data collection procedures are shared.

  12. [eLearning service for home palliative care]. (United States)

    Sakuyama, Toshikazu; Komatsu, Kazuhiro; Inoue, Daisuke; Fukushima, Osamu


    In order to support the home palliative care learning, we made the eLearning service for home palliative care (beta version) and tried to teach the palliative care to the medical staffs in the community. The various learners (such as nurses, pharmacists and the like) accessed to the online learning and used this eLearning service. After the learners finished eLearning for home palliative care, some questionnaires were distributed to the learners and analyzed by us. The analysis of questionnaires revealed that almost all were satisfied with our eLearning services. Especially the learners were not only interested in using the skills of opioids and the management of pain control, but they had a good cognition for the usage of opioids.

  13. [Pressure ulcers in palliative home care patients: prevalence and characteristics]. (United States)

    Queiroz, Ana Carolina de Castro Mendonça; Mota, Dálete Delalibera Corrêa de Faria; Bachion, Maria Marcia; Ferreira, Ana Cássia Mendes


    Persons in palliative care develop pressure ulcers (PU) as death approaches, but the extent of the problem is still unknown. The objectives were to identify the prevalence of pressure ulcers in people with cancer in palliative home care, compare the socio-demographic and clinical profile of patients with and without pressure ulcers, and analyze the characteristics of the ulcers. This descriptive, cross-sectional study included 64 people with advanced cancer in palliative home care. Twelve of them (18.8%) had PU, of whom 75.0% were men. The participants had one to three PU, amounting to 19 lesions, 89.4% of those developed at home and 47.4% at stage 3. The presence of PU was higher among those who had a history of previous wound. PU consisted of a significant event occurring in the studied population, indicating that preventive measures should be included in the home palliative care health team.

  14. The role of dentist in palliative care team

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    Rani P Mol


    Full Text Available The palliative doctor gives the ′touch of God′ as he/she takes care of the terminally ill patient. The oncologist encounters great difficulties in managing oral cavity problems of these patients. A trained dental doctor can help other doctors in dealing with these situations. But the general dental surgeon does not have enough idea about his part in these treatments. The community is also unaware of the role that a nearby dentist can play. Adequate training programs have to be conducted and awareness has to be created. A trained dentist will be a good team mate for the oncologist or radiotherapist or other doctors of the palliative care team. In this paper, a brief attempt is made to list a few areas in which a palliative care dentist can help other members of the palliative care team and also the patient in leading a better life.

  15. Early Palliative Care Improves Patients' Quality of Life (United States)

    ... fullstory_160885.html Early Palliative Care Improves Patients' Quality of Life Also increases chances of having end-of-life ... incurable cancer helps patients cope and improves their quality of life, a new study shows. It also leads to ...

  16. Utility and potential of bedside ultrasound in palliative care

    Directory of Open Access Journals (Sweden)

    Ekta Dhamija


    Full Text Available Bedside ultrasound is an important tool in modern palliative care practice. It can be utilized for rapid diagnostic evaluation or as an image guidance to perform invasive therapeutic procedures. With advent of portable ultrasound machines, it can also be used in community or home care settings, apart from palliative care wards. Major applications of bedside ultrasound include drainage of malignant pleural effusions and ascites, nerve blocks, venous access, evaluation of urinary obstruction, deep vein thrombosis and abscesses. Bedside ultrasound leads to better clinical decision-making as well as more accurate and faster invasive therapeutic procedures. It also enhances patient comfort and reduces cost burden. However, use of bedside ultrasound is still not widespread among palliative care givers, owing to initial cost, lack of basic training in ultrasound and apprehensions about its use. A team approach involving radiologists is important to develop integration of bedside ultrasound in palliative care.

  17. Why Palliative Care for Children is Preferable to Euthanasia. (United States)

    Carter, Brian S


    Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia.

  18. [Ethical challenge in palliative support of intensive care patients]. (United States)

    Salomon, Fred


    Intensive care medicine and palliative care medicine were considered for a long time to be contrasting concepts in therapy. While intensive care medicine is directed towards prolonging life and tries to stabilize disordered body functions, palliative care medicine is focused upon the relief of disturbances to help patients in the face of death. Today both views have become congruent. Palliative aspects are equally important in curative therapy. In the course of illness or in respect of the patient's will, the aim of therapy may change from curative to palliative. Two examples are presented to illustrate the ethical challenges in this process. They follow from the medical indication, attention to the patient's will, different opinions in the team, truth at the bedside and from what must be done in the process of withdrawing therapy.

  19. Smarter palliative care for cancer: Use of smartphone applications

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    Nisha Rani Jamwal


    Full Text Available Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers' necessities and patients' biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care.

  20. Treating nausea and vomiting in palliative care: a review

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    Glare P


    Full Text Available Paul Glare, Jeanna Miller, Tanya Nikolova, Roma TickooPain and Palliative Care Service, Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, NY, USAAbstract: Nausea and vomiting are portrayed in the specialist palliative care literature as common and distressing symptoms affecting the majority of patients with advanced cancer and other life-limiting illnesses. However, recent surveys indicate that these symptoms may be less common and bothersome than has previously been reported. The standard palliative care approach to the assessment and treatment of nausea and vomiting is based on determining the cause and then relating this back to the “emetic pathway” before prescribing drugs such as dopamine antagonists, antihistamines, and anticholinergic agents which block neurotransmitters at different sites along the pathway. However, the evidence base for the effectiveness of this approach is meager, and may be in part because relevance of the neuropharmacology of the emetic pathway to palliative care patients is limited. Many palliative care patients are over the age of 65 years, making these agents difficult to use. Greater awareness of drug interactions and QTc prolongation are emerging concerns for all age groups. The selective serotonin receptor antagonists are the safest antiemetics, but are not used first-line in many countries because there is very little scientific rationale or clinical evidence to support their use outside the licensed indications. Cannabinoids may have an increasing role. Advances in interventional gastroenterology are increasing the options for nonpharmacological management. Despite these emerging issues, the approach to nausea and vomiting developed within palliative medicine over the past 40 years remains relevant. It advocates careful clinical evaluation of the symptom and the person suffering it, and an understanding of the clinical pharmacology of medicines that are available for palliating

  1. Retroperitoneal endodermal sinus tumor patient with palliative care needs

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    Surbhi Kashyap


    Full Text Available This article is a case reflection of a personal encounter on the palliative care treatment required after the removal of a complicated case of a primary extra-gonadal retro-peritoneal endodermal sinus tumor (yolk sac tumor. This reflection is from the perspective of a recently graduated MD student who spent one month with an Indian pain management and palliative care team at the Institute Rotary Cancer Hospital (IRCH, All India Institute of Medical Sciences (AIIMS, New Delhi

  2. Music therapy for palliative care: A realist review.


    McConnell, T; Porter, Samuel


    OBJECTIVE: Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. METHOD: We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therap...

  3. Chinese Herbal Medicine for Symptom Management in Cancer Palliative Care



    Abstract Use of Chinese herbal medicines (CHM) in symptom management for cancer palliative care is very common in Chinese populations but clinical evidence on their effectiveness is yet to be synthesized. To conduct a systematic review with meta-analysis to summarize results from CHM randomized controlled trials (RCTs) focusing on symptoms that are undertreated in conventional cancer palliative care. Five international and 3 Chinese databases were searched. RCTs evaluating CHM, either in comb...

  4. Assessment of a Hospital Palliative Care Unit (HPCU) for Cancer Patients; A Conceptual Framework (United States)

    Rouhollahi, Mohammad Reza; Saghafinia, Masoud; Zandehdel, Kazem; Motlagh, Ali Ghanbari; Kazemian, Ali; Mohagheghi, Mohammad Ali; Tahmasebi, Mamak


    Introduction: The first hospital palliative care unit (HPCU) in Iran (FARS-HPCU) has been established in 2008 in the Cancer Institute, which is the largest referral cancer center in the country. We attempted to assess the performance of the HPCU based on a comprehensive conceptual framework. The main aim of this study was to develop a conceptual framework for assessment of the HPCU performances through designing a value chain in line with the goals and the main processes (core and support). Materials and Methods: We collected data from a variety of sources, including international guidelines, international best practices, and expert opinions in the country and compared them with national policies and priorities. We also took into consideration the trend of the HPCU development in the Cancer Institute of Iran. Through benchmarking the gap area with the performance standards, some recommendations for better outcome are proposed. Results: The framework for performance assessment consisted of 154 process indicators (PIs), based on which the main stakeholders of the HPCU (including staff, patients, and families) offered their scoring. The outcome revealed the state of the processes as well as the gaps Conclusion: Despite a significant improvement in many processes and indicators, more development in the comprehensive and integrative aspects of FARS-HPCU performance is required. Consideration of all supportive and palliative requirements of the patients through interdisciplinary and collaborative approaches is recommended. PMID:26600701

  5. A syllabus for fellowship education in palliative medicine. (United States)

    LeGrand, Susan B; Walsh, Declan; Nelson, Kristine A; Davis, Mellar P


    Recent years have seen significant growth in palliative medicine training programs and positions. There are plans to pursue palliative medicine specialty status with the American Board of Medical Specialties and accreditation of fellowship programs with the American College of Graduate Medical Education. A work group of program directors, supported initially by the Cleveland Clinic and then by the American Board of Hospice and Palliative Medicine, has recently published standards for fellowship training. Despite this, fundamental questions remain about defining the field and delineating the knowledge and skills expected following completion of specialty training. In this article, we describe the first fellowship program in palliative medicine (PMP) in the United States, developed and supported by the Cleveland Clinic Foundation. The program has been implemented as part of the Harry R. Horvitz Center for Palliative Medicine, founded in 1987 as the first comprehensive integrated US program in this field. This training program, in existence since 1989, features a traditional rotational structure with an inpatient primary care service, inpatient consult services, and an outpatient consult/hospice service. This article outlines the syllabus developed for this fellowship, given what we believe to be the essential knowledge base for the field of palliative medicine.

  6. Community pharmacists: a forgotten resource for palliative care. (United States)

    Tait, Paul Anthony; Gray, John; Hakendorf, Paul; Morris, Bel; Currow, David Christopher; Rowett, Debra S


    Timely access to medicines within the community is important for palliative patients where their preferred place of care is the home environment. The objective of this observational study is to establish baseline data to quantify the issue of poor access to medicines for symptom control in the last few days of life. The list of 13 medicines was generated from medicine use within a metropolitan palliative care unit. A survey was designed to determine which of these 13 medicines community pharmacies stock, the expiry date of this stock, awareness of palliative care patients by community pharmacists and basic demographic characteristics of the community pharmacies. Surveys were distributed, by post, to all community pharmacies in South Australia. The response rate was 23.7%, and was representative of all socioeconomic areas. Each pharmacy stocked a median of 3 medicines (range 0-12) with 1 in 8 pharmacies having none of the 13 medicines listed in the survey. When the data was combined to identify the range of medicines from all pharmacies within a geographical postcode region, the median number of medicines increased to 5 medicines per postcode. Just over 1 in 5 pharmacies reported learning about the palliative status of a patient through another health practitioner. Community pharmacies remain an underused resource to support timely access to medicines for community-based palliative patients. Palliative care services and government agencies can develop new strategies for better access to medicines that will benefit community patients and their carers.

  7. Proteomic-coupled-network analysis of T877A-androgen receptor interactomes can predict clinical prostate cancer outcomes between White (non-Hispanic) and African-American groups. (United States)

    Zaman, Naif; Giannopoulos, Paresa N; Chowdhury, Shafinaz; Bonneil, Eric; Thibault, Pierre; Wang, Edwin; Trifiro, Mark; Paliouras, Miltiadis


    The androgen receptor (AR) remains an important contributor to the neoplastic evolution of prostate cancer (CaP). CaP progression is linked to several somatic AR mutational changes that endow upon the AR dramatic gain-of-function properties. One of the most common somatic mutations identified is Thr877-to-Ala (T877A), located in the ligand-binding domain, that results in a receptor capable of promiscuous binding and activation by a variety of steroid hormones and ligands including estrogens, progestins, glucocorticoids, and several anti-androgens. In an attempt to further define somatic mutated AR gain-of-function properties, as a consequence of its promiscuous ligand binding, we undertook a proteomic/network analysis approach to characterize the protein interactome of the mutant T877A-AR in LNCaP cells under eight different ligand-specific treatments (dihydrotestosterone, mibolerone, R1881, testosterone, estradiol, progesterone, dexamethasone, and cyproterone acetate). In extending the analysis of our multi-ligand complexes of the mutant T877A-AR we observed significant enrichment of specific complexes between normal and primary prostatic tumors, which were furthermore correlated with known clinical outcomes. Further analysis of certain mutant T877A-AR complexes showed specific population preferences distinguishing primary prostatic disease between white (non-Hispanic) vs. African-American males. Moreover, these cancer-related AR-protein complexes demonstrated predictive survival outcomes specific to CaP, and not for breast, lung, lymphoma or medulloblastoma cancers. Our study, by coupling data generated by our proteomics to network analysis of clinical samples, has helped to define real and novel biological pathways in complicated gain-of-function AR complex systems.

  8. Proteomic-coupled-network analysis of T877A-androgen receptor interactomes can predict clinical prostate cancer outcomes between White (non-Hispanic and African-American groups.

    Directory of Open Access Journals (Sweden)

    Naif Zaman

    Full Text Available The androgen receptor (AR remains an important contributor to the neoplastic evolution of prostate cancer (CaP. CaP progression is linked to several somatic AR mutational changes that endow upon the AR dramatic gain-of-function properties. One of the most common somatic mutations identified is Thr877-to-Ala (T877A, located in the ligand-binding domain, that results in a receptor capable of promiscuous binding and activation by a variety of steroid hormones and ligands including estrogens, progestins, glucocorticoids, and several anti-androgens. In an attempt to further define somatic mutated AR gain-of-function properties, as a consequence of its promiscuous ligand binding, we undertook a proteomic/network analysis approach to characterize the protein interactome of the mutant T877A-AR in LNCaP cells under eight different ligand-specific treatments (dihydrotestosterone, mibolerone, R1881, testosterone, estradiol, progesterone, dexamethasone, and cyproterone acetate. In extending the analysis of our multi-ligand complexes of the mutant T877A-AR we observed significant enrichment of specific complexes between normal and primary prostatic tumors, which were furthermore correlated with known clinical outcomes. Further analysis of certain mutant T877A-AR complexes showed specific population preferences distinguishing primary prostatic disease between white (non-Hispanic vs. African-American males. Moreover, these cancer-related AR-protein complexes demonstrated predictive survival outcomes specific to CaP, and not for breast, lung, lymphoma or medulloblastoma cancers. Our study, by coupling data generated by our proteomics to network analysis of clinical samples, has helped to define real and novel biological pathways in complicated gain-of-function AR complex systems.

  9. Ways of knowing hope: Carper's fundamental patterns as a guide for hope research with bereaved palliative caregivers. (United States)

    Holtslander, Lorraine F


    Carper's ways of knowing in nursing, empirics, esthetics, personal knowing, and ethics, provide a guide to holistic practice, education, and research. The origin and evolution of the ways of knowing are discussed and applied to current and proposed hope research with bereaved palliative caregivers, with the ultimate goal of promoting healthy, positive outcomes for this unique population. Bereaved palliative caregivers have unmet needs that may be addressed by research exploring hope during grief. For example, research from an empirical perspective identifies hope as a variable in grief resolution, esthetic knowing guides qualitative research on hope, personal knowing provides a constructivist philosophy to a qualitative inquiry, and ethical knowing includes the moral obligation for evaluation research. Unknowing and sociopolitical knowing offer a critical perspective as research is developed and applied, while considering complexity and social context. Nursing research from diverse epistemological perspectives will enhance the effectiveness and appropriateness of evidence-based practice.

  10. African-American Biography. (United States)

    Martin, Ron


    Suggests sources of information for African American History Month for library media specialists who work with students in grades four through eight. Gale Research's "African-American Reference Library," which includes "African-America Biography,""African-American Chronology," and "African-American Almanac,"…

  11. High frequency of resistance, lack of clinical benefit, and poor outcomes in capreomycin treated South African patients with extensively drug-resistant tuberculosis.

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    Elize Pietersen

    Full Text Available There are limited data about the epidemiology and treatment-related outcomes associated with capreomycin resistance in patients with XDR-TB. Capreomycin achieves high serum concentrations relative to MIC but whether capreomycin has therapeutic benefit despite microbiological resistance remains unclear.We reviewed the susceptibility profiles and outcomes associated with capreomycin usage in patients diagnosed with XDR-TB between August 2002 and October 2012 in two provinces of South Africa. Patients whose isolates were genotypically tested for capreomycin resistance were included in the analysis.Of 178 XDR-TB patients 41% were HIV-infected. 87% (154/178 isolates contained a capreomycin resistance-conferring mutation [80% (143/178 rrs A1401G and 6% (11/178 were heteroresistant (containing both the rrs A1401G mutation and wild-type sequences]. Previous MDR-TB treatment, prior usage of kanamycin, or strain type was not associated with capreomycin resistance. 92% (163/178 of XDR-TB patients were empirically treated with capreomycin. Capreomycin resistance decreased the odds of sputum culture conversion. In capreomycin sensitive and resistant persons combined weight at diagnosis was the only independent predictor for survival (p=<0.001. By contrast, HIV status and use of co-amoxicillin/clavulanic acid were independent predictors of mortality (p=<0.05. Capreomycin usage was not associated with survival or culture conversion when the analysis was restricted to those whose isolates were resistant to capreomycin.In South Africa the frequency of capreomycin conferring mutations was extremely high in XDR-TB isolates. In those with capreomycin resistance there appeared to be no therapeutic benefit of using capreomycin. These data inform susceptibility testing and the design of treatment regimens for XDR-TB in TB endemic settings.

  12. African Trypanosomiasis (United States)


    Histol. 1977;375:53- 70. 42. Poltera AA, Owor R, Cox JN. Pathological aspects of human African trypanosomiasis (HAT) in Uganda. A post - mortem survey of...nodular lesions , including anthrax or tick bite associated with Rickettsia conorii infection. The chancre is followed by a hemolymphatic stage, dur- ing...electrocardiograph- ic changes and, at times, terminal cardiac insufficiency.41 Pulmonary lesions specifically related to trypanosomiasis are not

  13. Palliative radiotherapy of bone metastases; Palliative Strahlentherapie von Knochenmetastasen. Eine retrospektive Analyse von 176 Patienten

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    Koswig, S.; Buchali, A.; Boehmer, D.; Schlenger, L.; Budach, V. [Berlin Univ. (Germany). Universitaetsklinik Charite


    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.) [German] Ziel: Die Effizienz der palliativen Strahlentherapie bei ossaerer Metastasierung wird in dieser retrospektiven Studie untersucht. Das Spektrum der den Knochenmetastasen zugrundeliegenden unterschiedlichen Primaertumoren und

  14. Impact of specialist home-based palliative care services in a tertiary oncology set up: A prospective non-randomized observational study

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    Sunil R Dhiliwal


    Full Text Available Background: Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission. Materials and Methods: Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS and other parameters. Results: Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms ( P < 0.005. 83.2% patients received out of hours care (OOH through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes. Conclusion: Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.

  15. Obesity and African Americans (United States)

    ... Data > Minority Population Profiles > Black/African American > Obesity Obesity and African Americans African American women have the ... ss6304.pdf [PDF | 3.38MB] HEALTH IMPACT OF OBESITY More than 80 percent of people with type ...

  16. Impact of pain and palliative care services on patients

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    S Santha


    Full Text Available Background: Palliative care has become an emerging need of the day as the existing health-care facilities play only a limited role in the care of the chronically ill in the society. Patients with terminal illness in most cases spend their lives in the community among their family and neighbors, so there is the need for a multi disciplinary team for their constant care. Volunteers are primary care givers who originate normally from the same locality with local knowledge and good public contact through which they can make significant contributions in a team work by bridging the gap between the patient community and outside world. Aim: The present study has been undertaken to analyze the impact of palliative care services on patients by considering 51 variables. Materials and Methods: The respondents of the study include 50 pain and palliative care patients selected at random from 15 palliative care units functioning in Ernakulam district. The analysis was made by using statistical techniques viz. weighted average method, Chi-square test, Friedman repeated measures analysis of variance on ranks and percentages. Results: The study revealed that the major benefit of palliative care to the patients is the reduction of pain to a considerable extent, which was unbearable for them earlier. Second, the hope of patients could be maintained or strengthened through palliative care treatment. Conclusion: It is understood that the services of the doctors and nurses are to be improved further by making available their services to all the palliative care patients in a uniform manner.

  17. Patient participation in palliative care decisions: An ethnographic discourse analysis. (United States)

    Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert


    The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize

  18. Patient participation in palliative care decisions: An ethnographic discourse analysis

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    Emmanuelle Bélanger


    Full Text Available The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1 exposing uncertainty, (2 co-constructing patient preferences, (3 affirming patient autonomy, and finally (4 upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to

  19. Gynaecological malignancies from palliative care perspective

    Directory of Open Access Journals (Sweden)

    Kamlesh Mishra


    Full Text Available Of the approximately 80,000 new cases of all cancers detected every year in India, 10-15% are gynecological malignancies. As per population-based registries under the National Cancer Registry Program, the leading sites of cancer among women are the cervix uteri, breast, and oral cavity. About 50-60% of all cancers among women in India are mainly of the following four organs: cervix uteri, breast, corpus uteri, and ovaries. Over 70% of these women report for diagnostic and treatment services at an advanced stage of disease, resulting in poor survival and high mortality rates. Among all gynecological cancers, ovarian cancer is the deadliest one and, in 2/3 rd of the cases, is detected in an advanced stage. But, in India and in other developing countries, due to inadequate screening facilities for the preventable cancer cervix, this kills more women than any other cancer in females. Gynecology Oncologist as a sub-specialist has an immensely important role in curtailing the menace of gynecological malignancies by providing comprehensive preventive, curative, palliative and follow-up services, with the aim of assuring a good quality of life to women as a cornerstone of cancer management.

  20. Opportunities for Palliative Care in Public Health. (United States)

    De Lima, Liliana; Pastrana, Tania


    In May 2014, the World Health Assembly, of the World Health Organization (WHO), unanimously adopted a palliative care (PC) resolution, which outlines clear recommendations to the United Nations member states, such as including PC in national health policies and in the undergraduate curricula for health care professionals, and highlights the critical need for countries to ensure that there is an adequate supply of essential PC medicines, especially those needed to alleviate pain. This resolution also carries great challenges: Every year over 20 million patients (of which 6% are children) need PC at the end of life (EOL). However, in 2011, approximately three million patients received PC, and only one in ten people in need is currently receiving it. We describe this public health situation and systems failure, the history and evolution of PC, and the components of the WHO public health model. We propose a role for public health for PC integration in community settings to advance PC and relieve suffering in the world.

  1. Spirituality in palliative care: Evidence of counselling

    Directory of Open Access Journals (Sweden)

    David Rudilla


    Full Text Available When spiritual needs are effectively elaborated, they can help the individual to find meaning, sustain hope, and accept death in the context of the end of life. Counselling has been one of the therapies that is mostused to meet these needs. The aim of this work is to offer evidence on the efficacy of this therapy to improve the spirituality of patients attended in several health devices. In order to achieve this objective, a three-week intervention was carried out with 131 home care and hospitalized patients. The mean age was 70.61 (SD = 11.17; 51.1% were men. Spirituality was assessed before and after the intervention, and a multivariate analysis of variance (MANOVA was used to study the differences between these two moments, together with follow-up ANOVAs. Results indicated a positive effect, with a large effect size, F(3,110 = 31.266, p less than .001, E2 = .460. This study can be the starting point for the implementation of intervention programs in the context of palliative care.

  2. Palliative Treatment of Malignant Pleural Effusion

    Directory of Open Access Journals (Sweden)

    Chenyang Liu


    Full Text Available Malignant pleural effusion (MPE is a common clinical problem caused by cancers. Pleural effusion can be the first sign of cancer in more than 25% of patients. Lung cancer and breast cancer are the most common cancers that metastasize to the pleura in men and women, respectively. Other cancers, including, but not limited to, lymphomas, ovarian cancer, stomach cancer, and several unknown primary cancers can also lead to MPE. Dyspnea and chest pain are the most common symptoms of MPE along with other symptoms such as a cough, weight loss, anorexia, fatigue, and weakness. Aggravation of these symptoms is closely related to the rate of accumulation of pleural effusion. Treatment options to MPE are determined by the type and extent of the underlying malignancy. The major goals of the treatment are to relieve symptoms, restore functions, improve the quality of life, and minimize the duration of hospital stay and costs. Although some patients can be treated with systemic therapies, most of these treatments are temporary, and MPE would recur soon. Hence, further palliative treatments to effectively control pleural effusions and relieve symptoms are necessary. This review addresses the pathophysiology of MPE and the treatment options for patients with MPE.

  3. State of the art of palliative therapy. (United States)

    Seregni, E; Padovano, B; Coliva, A; Zecca, E; Bombardieri, E


    Bone pain in advanced stages of cancer significantly decreases the patient's quality of life having a great impact on physical, physiological and social functioning. About 65% of patients with prostate or breast cancer will experience symptomatic skeletal metastases. Bone pain sustained by osseous metastases represents the most frequent kind of pain and its clinical presentation and characteristics differ from other type of neoplastic pain (i.e., neuropathic or visceral ones). Pathophysiology of bone pain is not yet completely understood but a general mechanism including infiltration of bone tissue associated with osteolysis and release of biological active molecules able to stimulate peripheral nervous terminals, seems to be principally involved. In oncological practice, painful skeletal metastases are managed by different multidisciplinary modalities which include the use of systemic analgesics (i.e., bisphosphonates), antineoplastic agents (i.e., hormones and chemotherapeutics), external beam radiotherapy, interventional radiology and radiopharmaceuticals. In this review we will discuss the state of the art of palliative therapy of bone pain with particular emphasis to the current approved radiopharmaceuticals, focusing on indications, patient selection, efficacy and toxicity. Some remarks on new or under developing strategies in systemic metabolic radiopharmaceutical therapy will be reported.

  4. "PRIMARY PALLIATIVE CARE? - Treating terminally ill cancer patients in the primary care sector"

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn; Jensen, AB; Olesen, Frede;


    4th Research Forum of the European Association for Palliative Care "Collaborate to Catalyse Research", Venice Lido,......4th Research Forum of the European Association for Palliative Care "Collaborate to Catalyse Research", Venice Lido,...

  5. Palliative Care Raises Quality of Life, but Doesn't Extend It (United States)

    ... page: Palliative Care Raises Quality of Life, But Doesn't Extend ... 22, 2016 TUESDAY, Nov. 22, 2016 (HealthDay News) -- Palliative care can ease the burden that a serious illness ...

  6. Palliative care in advanced gynecological cancers: Institute of palliative medicine experience

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    Sushmita Pathy


    Full Text Available Aim: To study the epidemiological profile, clinical symptoms and referral patterns of patients with gynecological malignancy. To evaluate pain symptoms, response to treatment and factors affecting management in patients with advanced gynecological malignancies. Methods: A retrospective analysis was performed of the gynecological malignancy cases registered at the Pain and Palliative Care Clinic, Calicut, over a 12-month period between January 2006 and December 2006.Patient characteristics, symptoms and response to treatment were evaluated in detail. Results: A total of 1813 patients registered, of which 64 had gynecological malignancies. Most of the cases were referred from the Oncology Department of the Calicut Medical College. Fifty-five percent of the patients were unaware of their diagnosis. Psychosocial issues and anxiety were observed in 48%. Insomnia was seen in 52% of the cases. Pain was the most common and most distressing symptom. Adequate pain relief was achieved in only 32% of the patients. Conclusions: The number of gynecological malignancy cases attending the Pain and Palliative Care Clinic is small. Pain is the most common and distressing symptom, with only 32% of the patients achieving adequate pain relief. Poor drug compliance, incomplete assessment of pain and the lack of awareness of morphine therapy were identified as the most common causes for poor pain control.

  7. Palliative care and dementia--A time and place? (United States)

    Kydd, Angela; Sharp, Barbara


    The current focus in dementia care places emphasis on the potential of people to live well with the condition. Given the historical tendency to neglect the full rights and citizenship of people with dementia, such an emphasis gives hope and optimism that there is life after diagnosis. This paper seeks to explore the potential compromise of effective preparation for the complexities of advanced illness that may be presented by this consistently up-beat message. Dementia is a life limiting condition, currently without cure. Therefore, the appropriateness of palliative care may seem obvious. Yet, until relatively recently, palliative care was seen as an adjunct to oncology in the minds of professionals and public alike. However, there is a growing recognition that specialist palliative care has much to offer people with a range of long term conditions, including people with dementia. So, whilst 'living well' is an important message-especially following diagnosis-planning for advanced dementia and dying well is equally important. The aim of this paper is to highlight policy on the living well and the palliative care approach for people with dementia. A word limited narrative literature review was conducted to explore how policies have or have not informed the literature on both messages. The findings emphasise the need for a continuum approach to dementia care, with discussion on when, where, and how can palliative care be delivered for people with dementia.

  8. Islamic theology and the principles of palliative care. (United States)

    Al-Shahri, Mohammad Zafir


    It is well established that provision of palliative care is a human right for the patients and their families going through the suffering associated with a life-threatening illness. The holistic nature of palliative care, dictated by the multifaceted suffering experienced by patients, calls for giving due consideration to the cultural and spiritual background of the target population. Similarly, the paramount impact of Islamic wholeness on Muslims' perceptions, beliefs, and way of living makes it necessary for non-Muslim palliative care professionals who are caring for Muslim patients to increase their awareness about the parts of Islamic theology pertinent to the principles of palliative care. This would include a basic knowledge of the Islamic faith and how Muslims view and cope with the calamity of a life-threatening condition along with the suffering associated with it. Equally important are issues related to the management of symptoms using agents that are normally strictly prohibited by Islamic teachings, including opioids, brain stimulants, and cannabinoids. The current review briefly discusses the Islamic perspectives pertinent to a Muslim patient's journey throughout the palliative care experience, onward to a safe passing, and beyond.

  9. Palliative Interventional and Surgical Therapy for Unresectable Pancreatic Cancer

    Directory of Open Access Journals (Sweden)

    Helmut Friess


    Full Text Available Palliative treatment concepts are considered in patients with non-curatively resectable and/or metastasized pancreatic cancer. However, patients without metastases, but presented with marginally resectable or locally non-resectable tumors should not be treated by a palliative therapeutic approach. These patients should be enrolled in neoadjuvant radiochemotherapy trials because a potentially curative resection can be achieved in approximately one-third of them after finishing treatment and restaging. Within the scope of best possible palliative care, resection of the primary cancer together with excision of metastases represents a therapeutic option to be contemplated in selected cases. Comprehensive palliative therapy is based on treatment of bile duct or duodenal obstruction for certain locally unresectable or metastasized advanced pancreatic cancer. However, endoscopic or percutaneous stenting procedures and surgical bypass provide safe and highly effective therapeutic alternatives. In case of operative drainage of the biliary tract (biliodigestive anastomosis, the prophylactic creation of a gastro-intestinal bypass (double bypass is recommended. The decision to perform a surgical versus an endoscopic procedure for palliation depends to a great extent on the tumor stage and the estimated prognosis, and should be determined by an interdisciplinary team for each patient individually.

  10. [Assessment of our home care and home palliative care]. (United States)

    Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu


    We conducted home care and home palliative care from the department of home care. We provided home care services to 190 patients(105 men, 85 women)in October 2013. Their average age was 78.7(range: 32-102)years old, and home care had been underway from 1 day to 8 years, 10 months. Among all participants, 168(88.4%)suffered from malignant diseases, 168 patients had died, and over half of deceased patients(88 out of 168)had died at home. We used opioids for control of cancer pain, carried out home parenteral nutrition(HPN), home enteral nutrition(HEN), percutaneous endoscopic gastrostomy( PEG), and removed pleural effusion and ascites during home care. In order to facilitate the practice of palliative care by the palliative care team, which consists of various medical staff in the hospital, we are giving high priority to education and enlightenment in the hospital. To provide enlightenment, education, and cooperation between regional home care and home palliative care, we are also conducting educational lectures in the regional party of the Iwaki city medical associate, and providing combined educational-medical training for home care and home palliative care by various medical staff.

  11. Palliative Interventional and Surgical Therapy for Unresectable Pancreatic Cancer

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    Assfalg, Volker; Hüser, Norbert; Michalski, Christoph; Gillen, Sonja; Kleeff, Jorg; Friess, Helmut, E-mail: [Department of Surgery, Klinikum rechts der Isar, Technische Universität München, Ismaningerstr. 22, D-81675 Munich (Germany)


    Palliative treatment concepts are considered in patients with non-curatively resectable and/or metastasized pancreatic cancer. However, patients without metastases, but presented with marginally resectable or locally non-resectable tumors should not be treated by a palliative therapeutic approach. These patients should be enrolled in neoadjuvant radiochemotherapy trials because a potentially curative resection can be achieved in approximately one-third of them after finishing treatment and restaging. Within the scope of best possible palliative care, resection of the primary cancer together with excision of metastases represents a therapeutic option to be contemplated in selected cases. Comprehensive palliative therapy is based on treatment of bile duct or duodenal obstruction for certain locally unresectable or metastasized advanced pancreatic cancer. However, endoscopic or percutaneous stenting procedures and surgical bypass provide safe and highly effective therapeutic alternatives. In case of operative drainage of the biliary tract (biliodigestive anastomosis), the prophylactic creation of a gastro-intestinal bypass (double bypass) is recommended. The decision to perform a surgical versus an endoscopic procedure for palliation depends to a great extent on the tumor stage and the estimated prognosis, and should be determined by an interdisciplinary team for each patient individually.

  12. Prostate cancer in men of African origin. (United States)

    McGinley, Kathleen F; Tay, Kae Jack; Moul, Judd W


    Men of African origin are disproportionately affected by prostate cancer: prostate cancer incidence is highest among men of African origin in the USA, prostate cancer mortality is highest among men of African origin in the Caribbean, and tumour stage and grade at diagnosis are highest among men in sub-Saharan Africa. Socioeconomic, educational, cultural, and genetic factors, as well as variations in care delivery and treatment selection, contribute to this cancer disparity. Emerging data on single-nucleotide-polymorphism patterns, epigenetic changes, and variations in fusion-gene products among men of African origin add to the understanding of genetic differences underlying this disease. On the diagnosis of prostate cancer, when all treatment options are available, men of African origin are more likely to choose radiation therapy or to receive no definitive treatment than white men. Among men of African origin undergoing surgery, increased rates of biochemical recurrence have been identified. Understanding differences in the cancer-survivorship experience and quality-of-life outcomes among men of African origin are critical to appropriately counsel patients and improve cultural sensitivity. Efforts to curtail prostate cancer screening will likely affect men of African origin disproportionately and widen the racial disparity of disease.

  13. Communication in palliative care: philosophy, teaching approaches, and evaluation of an educational program for nurses. (United States)

    Rønsen, Astrid; Hanssen, Ingrid


    In this article is presented a post-graduate program in palliative care nursing focusing communication. The teaching plan was inspired by action learning, and the students' discovery processes necessitated a variety of teaching methods. The program was based on a holistic view of the human being and of inter-human communication. Neuro-motoric stimulation exercises were used to improve the students' focus of attention, sensory reception, and awareness of their corporeal and intellectual selves. Stimulation of relational skills, the discussion of ethical and difficult questions, and narratives helped students discover relationships between theoretical knowledge and palliative practice, and were used to explain and illustrate topics, and as backgrounds for discussions. During the program the students examined, challenged, and continuously reflected upon their explicit and unconscious praxis theories and their communicative habits. Although very different from educational programs they previously had experienced, this teaching/learning plan and the outcome thereof was positively evaluated. At the end of the year the students found themselves to be more knowledgeable, discerning and self-confident nurses. Even so, some found that they needed more time to digest what they had learned and for new knowledge and philosophies to become internalised.

  14. Gastroduodenal Outlet Obstruction and Palliative Self-Expandable Metal Stenting: A Dual-Centre Experience

    Directory of Open Access Journals (Sweden)

    Nik S. Ding


    Full Text Available Background. Self-expandable metal stents (SEMs are increasingly being utilised instead of invasive surgery for the palliation of patients with malignant gastroduodenal outlet obstruction. Aim. To review two tertiary centres’ experience with placement of SEMs and clinical outcomes. Methods. Retrospective analysis of prospectively collected data over 12 years. Results. Ninety-four patients (mean age, 68; range 28–93 years underwent enteral stenting during this period. The primary tumour was gastric adenocarcinoma in 27 (29% patients, pancreatic adenocarcinoma in 45 (48%, primary duodenal adenocarcinoma in 8 (9%, and cholangiocarcinoma and other metastatic cancers in 14 (16%. A stent was successfully deployed in 95% of cases. There was an improvement in gastric outlet obstruction score (GOOS in 84 (90% of patients with the ability to tolerate an enteral diet. Median survival was 4.25 months (range 0–49 without any significant differences between types of primary malignancy. Mean hospital stay was 3 days (range 1–20. Reintervention rate for stent related complications was 5%. Conclusion. The successful deployment of enteral stents achieves excellent palliation often resulting in the prompt reintroduction of enteral diet and early hospital discharge with minimal complications and reintervention.

  15. Music thanatology: prescriptive harp music as palliative care for the dying patient. (United States)

    Freeman, Lindsay; Caserta, Michael; Lund, Dale; Rossa, Shirley; Dowdy, Ann; Partenheimer, Andrea


    Music thanatology represents an emerging area in which the raw materials of music, usually harp and/or voice, assist and comfort the dying patient. During prescriptive "music vigils, " the clinician-musician carefully observes physiological changes, cues, and breathing patterns, thereby synchronizing the music to reflect or support the patient's physiology and overall condition. Using data collected from 65 patients, this study was designed to assess the effectiveness of prescriptive harp music on selected palliative care outcomes using a sample of de-identified data forms from past music vigils. Patients were administered a 25- to 95-minute intervention of prescriptive harp music. Data collected included vital signs and observational indicators before (Ti) and after (T2) the vigil. Patients were more likely to experience decreased levels of agitation and wakefulness while also breathing more slowly and deeply with less effort at the conclusion of the music vigil. Results from this study suggest that a prescriptive vigil conducted by a trained music thanatologist could provide an effective form of palliative care for dying patients.

  16. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

    Directory of Open Access Journals (Sweden)

    Barbara Gomes

    Full Text Available BACKGROUND: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. OBJECTIVES: 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. METHODS: Search methods: We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria: We included randomised controlled trials (RCTs, controlled clinical trials (CCTs, controlled before and after studies (CBAs and interrupted time series (ITSs evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis: One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs for the primary outcome (death at home. MAIN RESULTS: We identified 23 studies (16 RCTs, 6 of high quality, including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure

  17. Shared care in basic level palliative home care: organizational and interpersonal challenges

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjoern; Olesen, Frede; Jensen, Anders Bonde;


    palliative home care and the working culture among health professionals. The main issues: distribution of tasks, information exchange, availability, respect, and personal acquaintance are pivotal to improve the delivery of palliative home care, to training in palliative care and warrant future research....

  18. The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia (United States)

    McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin


    Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…

  19. Palliative radiotherapy in head and neck cancers: Evidence based review

    Directory of Open Access Journals (Sweden)

    Talapatra Kaustav


    Full Text Available Squamous cell carcinoma of head and neck (SCCHN is one of the commonest cancers seen in India, constituting up to 25% of their overall cancer burden. Advanced SCCHN is a bad disease with a poor prognosis and patients usually die of uncontrolled loco-regional disease. Curative intent management of loco-regionally advanced SCCHN has become more evidence-based with active clinical research in the form of large prospective randomized controlled trials and meta-analyses. However, little has been written about palliative radiotherapy (PRT in head and neck cancers. It is widely recognized that PRT provides effective palliation and improved quality-of-life in advanced incurable malignancies. It is in this context that this study proposes to review the existing literature on palliative radiotherapy in advanced incurable SCCHN to help formulate consensus guidelines and recommendations.

  20. Efficiency of searching the grey literature in palliative care. (United States)

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


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

  1. The importance of measuring customer satisfaction in palliative care. (United States)

    Turriziani, Adriana; Attanasio, Gennaro; Scarcella, Francesco; Sangalli, Luisa; Scopa, Anna; Genualdo, Alessandra; Quici, Stefano; Nazzicone, Giulia; Ricciotti, Maria Adelaide; La Commare, Francesco


    In the last decades, palliative care has been more and more focused on the evaluation of patients' and families' satisfaction with care. However, the evaluation of customer satisfaction in palliative care presents a number of issues such as the presence of both patients and their families, the frail condition of the patients and the complexity of their needs, and the lack of standard quality indicators and appropriate measurement tools. In this manuscript, we critically review existing evidence and literature on the evaluation of satisfaction in the palliative care context. Moreover, we provide - as a practical example - the preliminary results of our experience in this setting with the development of a dedicated tool for the measurement of satisfaction.

  2. Cooperating with a palliative home-care team

    DEFF Research Database (Denmark)

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


    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....... Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance...

  3. Reflections on Palliative Care from the Jewish and Islamic Tradition

    Directory of Open Access Journals (Sweden)

    Michael Schultz


    Full Text Available Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.

  4. Are we using Placebo effects in specialized Palliative Care?

    DEFF Research Database (Denmark)

    Sigaard, Jarl Voss; Dinesen, Birthe Irene

    and other symptoms in terminally ill cancer patients. Aim: The aim of this study was to explore whether and/or how a Specialized Palliative Care Team might contribute to the creation of placebo effects. Methods: The study was conducted as a qualitative study using a phenomenological/ hermeneutic approach......Background: Placebo effects are positive treatment effects that occur because of the psycho-social context around the therapy. Such effects are well documented in pain treatment, as well as in the treatment of other common symptoms. Specialized Palliative Care focuses on the relief of pain....... A literature review was carried out to identify state-of-the-art knowledge about placebo effects. A triangulation of data collection techniques was used, including participant observations (n= 8.6 hours) and a focus group interview with 7 members of the Specialized Palliative Care Team. Observations from six...

  5. Enhancing collaborative leadership in palliative social work in oncology. (United States)

    Jones, Barbara; Phillips, Farya; Head, Barbara Anderson; Hedlund, Susan; Kalisiak, Angela; Zebrack, Brad; Kilburn, Lisa; Otis-Green, Shirley


    The Institute of Medicine (IOM) Report-Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs-provided recommendations for meeting the palliative care needs of our growing population of older Americans. The IOM report highlights the demand for social work leadership across all aspects of the health care delivery system. Social workers are core interdisciplinary members of the health care team and it is important for them to be well prepared for collaborative leadership roles across health care settings. The ExCEL in Social Work: Excellence in Cancer Education & Leadership education project was created as a direct response to the 2008 IOM Report. This article highlights a sampling of palliative care projects initiated by outstanding oncology social work participants in the ExCEL program. These projects demonstrate the leadership of social workers in palliative care oncology.

  6. [Current status of palliative care in medical oncology]. (United States)

    Sasaki, Tsubasa; Ohta, Syuji; Seki, Nobuhiko; Eguchi, Kenji


    A team approach is efficient in palliative care for cancer patients. People suffered from cancer have a right to receive high-quality palliative care earlier in cancer treatment. In Japan the National Act for Strategy against Cancer was enacted in 2007. Systematic educational programs supported by the Ministry of Health Labor and Welfare has been conducted for medical staffs, home care staffs, local pharmacists, care managers etc. at core institutes in each district. Pain control is still major target for cancer palliative medicine. Recently various types of opioids can be used routinely in daily clinical setting for Japanese cancer patients. Complementary and alternative medicine (CAM) may also effective in some patients but further study for proving scientific evidence in CAM should be warranted. Tailor-maid pain control will be established in the near future with molecular based pharmacogenomics.

  7. [Palliative care to adolescents with cancer: a literature review]. (United States)

    Remedi, Patrícia Pereira; Mello, Débora Faleiros de; Menossi, Maria José; Lima, Regina Aparecida Garcia de


    Providing care to adolescents with cancer in the process of death and dying has been a great challenge for health professionals. This challenge is marked by a high emotional burden and specificities of this stage of human development. The purpose of the present study was to review the scientific literature regarding palliative care to adolescents with cancer. This study is a literature review, which data collection was performed using Lilacs, Medline, and PsycInfo, in addition to non-systematic databases. An analysis of the manuscripts revealed three themes: adolescence and its different definitions; the particularities of adolescents with cancer; and palliative care to adolescents with cancer. The study showed there is a scarcity of evidenced-based research defining the panorama of symptoms affecting the quality of life during palliative care and an absence of specific programs in the stage of fast changes that, alone, demand for adaptive efforts.

  8. Spiritual Well-Being for Increasing Life Expectancy in Palliative Radiotherapy Patients: A Questionnaire-Based Study. (United States)

    Hematti, Simin; Baradaran-Ghahfarokhi, Milad; Khajooei-Fard, Rasha; Mohammadi-Bertiani, Zohreh


    Spiritual well-being in patients with an advanced cancer has been found to positively correlate with subjective well-being, lower pain levels, hope and positive mood states, high self-esteem, social competence, purpose in life, and overall quality of life. In this regard, Quran recitation is stated to be an efficient way to increase patient spirituality and also to handle life's everyday challenges. The aim of this study was to investigate the effects of listening, reading, and watching the text of the Holy Quran, called (in this study) Quran recitation, for increasing life expectancy (LE) in palliative radiotherapy patients admitted to Radiotherapy Department of Seyed alshohada Hospital, Isfahan, Iran. A questionnaire-based study was carried out on a total of 89 palliative radiotherapy patients between March 2012 and June 2012. Informed consent was obtained. The patients were requested to complete a standardized questionnaire which was designed based on the European Organization for Research and Treatment of Cancer C30 Scale Quality of Life Questionnaire (EORTC C30 Scale QLQ). A computer program (SPSS version 16.0, Chicago, IL, USA) was used, and data were analyzed by the Wilcoxon test and Spearman's rank correlation. All hypotheses were tested using a criterion level of P = 0.05. There was a significant difference for frequency and duration of Quran recitation among patients, before and after the diagnosis of their cancer (P = 0.03). Using the Spearman's rank correlation, it was found that there was a correlation between Quran recitation and subjective well-being (r = 0.352, P Quran recitation and increasing LE (r = 0.311, P Quran are useful for increasing LE in palliative radiotherapy patients admitted to Radiotherapy Department. In other words, a benefit of Quran recitation on outcome of radiotherapy for palliative radiotherapy patients was found.

  9. Underutilization of palliative care services in the liver transplant population (United States)

    Kathpalia, Priya; Smith, Alexander; Lai, Jennifer C


    AIM To evaluate use of palliative care services in patients with end-stage liver disease who do not have access to liver transplant. METHODS Evaluated were end-stage liver disease patients who were removed from the liver transplant wait-list or died prior to transplant at a single transplant center over a 2-year period. Those who were removed due to noncompliance or ultimately transplanted elsewhere were excluded from this study. Patient characteristics associated with palliative care consultation were assessed using logistic regression analysis. RESULTS Six hundred and eighty-three patients were listed for liver transplant in 2013-2014 with 107 (16%) dying (n = 62) or removed for clinical decompensation prior to liver transplant (n = 45): Median age was 58 years, and the majority were male (66%), Caucasian (53%), had Child C cirrhosis (61%) or hepatocellular carcinoma (52%). The palliative care team was consulted in only 18 of the 107 patients (17%) who died or were removed, 89% of which occurred as inpatients. Half of these consultations occurred within 72 h of death. In univariable analysis, patients of younger age, white race, and higher end-stage liver disease scores at time of listing and delisting were more likely to receive palliative care services. Only younger age [Odds ratio (OR) = 0.92; P = 0.02] and Caucasian race (OR = 4.90; P = 0.02) were still associated with integration of palliative care services through multivariable analysis. CONCLUSION Palliative care services are grossly underutilized in older, non-white patients with cirrhosis on the liver transplant wait-list. We encourage early integration of these services into clinical decision-making in the transplant population, with further studies aimed at understanding barriers to consultation. PMID:27683638

  10. Family meetings in palliative care: Multidisciplinary clinical practice guidelines

    Directory of Open Access Journals (Sweden)

    O'Hanlon Brendan


    Full Text Available Abstract Background Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. Methods The guidelines were developed via the following methods: (1 A literature review; (2 Conceptual framework; (3 Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. Results The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. Conclusion Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.

  11. Communication skills in palliative surgery: skill and effort are key. (United States)

    Miner, Thomas J


    Excellence as a surgeon requires not only the technical and intellectual ability to effectively take care of surgical disease but also an ability to respond to the needs and questions of patients. This article provides an overview of the importance of communication skills in optimal surgical palliation and offers suggestions for a multidisciplinary team approach, using the palliative triangle as the ideal model of communication and interpersonal skills. This article also discusses guidelines for advanced surgical decision making and outlines methods to improve communication skills.

  12. Communication as a core skill of palliative surgical care. (United States)

    Miner, Thomas J


    Excellence as a surgeon requires not only the technical and intellectual ability to effectively take care of surgical disease but also an ability to respond to the needs and questions of patients. This article provides an overview of the importance of communication skills in optimal surgical palliation and offers suggestions for a multidisciplinary team approach, using the palliative triangle as the ideal model of communication and interpersonal skills. This article also discusses guidelines for advanced surgical decision making and outlines methods to improve communication skills.

  13. Palliative care and use of animal-assisted therapy. (United States)

    Engelman, Suzanne R


    A growing body of research and clinical reports support the benefits of utilizing animal-assisted therapy (AAT) as a complementary, transdisciplinary treatment intervention in medical settings. However, fewer articles are found demonstrating AAT's use in palliative care settings. This article is a study of the effects of AAT in palliative care situations, presenting one anecdotal clinical vignette. In this way, the efficacy of this technique in decreasing patient pain, thereby increasing patient quality of life, and lowering staff stress levels may be illustrated.

  14. Palliative and end of life care for people with dementia. (United States)

    Harrison Dening, Karen


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

  15. Palliative care in castrate-resistant prostate cancer. (United States)

    Rabow, Michael W; Lee, Michael Xiang


    Significant symptoms and suffering related to castrate-resistant prostate cancer (CRPC) are associated with the disease and its treatment. Increasingly, with advances in treatment efficacy, men can live with symptoms for long periods. Interdisciplinary palliative care teams (including physicians, nurses, social workers, chaplains, pharmacists, psychologists, physical therapists, and nutritionists) focused on symptom management and patients' goals of care can collaborate with prostate cancer surgeons, oncologists, and radiation oncologists to provide the best care for men at all stages of treatment, including end of life. This article reviews the benefits of palliative care in helping patients with CRPC manage symptoms and distress.

  16. In the sandbox: palliative care and hematologic malignancies. (United States)

    LeBlanc, Thomas W


    Palliative care specialists have had little involvement in the care of patients with hematologic malignancies. The reasons for this are not clear, because these patients certainly face a significant symptom burden, and many hematologic malignancies are either incurable or carry poor prognoses. For example, acute myeloid leukemia (AML) in patients over age 60 has a 5-year survival of less than 10%, akin to pancreatic cancer. Although most oncologists would agree with involving palliative care specialists in the case of advanced pancreatic cancer, few seem to consider this in the context of AML. Why should AML be any different?

  17. Use of the Palliative Performance Scale (PPS) for end-of-life prognostication in a palliative medicine consultation service. (United States)

    Lau, Francis; Maida, Vincent; Downing, Michael; Lesperance, Mary; Karlson, Nicholas; Kuziemsky, Craig


    This study examines the use of the Palliative Performance Scale (PPS) in end-of-life prognostication within a regional palliative care program in a Canadian province. The analysis was done on a prospective cohort of 513 patients assessed by a palliative care consult team as part of an initial community/hospital-based consult. The variables used were initial PPS score, age, gender, diagnosis, cancer type, and survival time. The findings revealed initial PPS to be a significant predictor of survival, along with age, diagnosis, cancer type and site, but not gender. The survival curves were distinct for PPS 10%, 20%, and 30% individually, and for 40%-60% and > or =70% as bands. This is consistent with earlier findings of the ambiguity and difficulty when assessing patients at higher PPS levels because of the subjective nature of the tool. We advocate the use of median survival and survival rates based on a local cohort where feasible, when reporting individual survival estimates.

  18. [Essentials for transition of palliative care patients to palliative home care and for management of their cancer pain]. (United States)

    Koshikawa, Takafumi; Shimoyama, Naohito


    Multi-disciplinary team work among visiting doctors, nurses, care managers and pharmacists located close to the patient's home is essential for smooth transition of a palliative care patient from hospital care to palliative home care and should be set up prior to the patient's discharge from the hospital. Palliative home care physicians should have knowledge of the fundamental support by the government to spare excessive cost to the patients. As for cancer pain management, opioid-centered analgesic therapies have lead to better quality home care for patients. In Japan, although oxycodone SRs and fentanyl patches are available besides morphine, there is no rescue opioid other than morphine. On the other hand, some cancer pain refractory to opioids such as neuropathic cancer pain should be carefully treated by adjuvant analgesics in conjunction with non-pharmacological treatments.

  19. A Multicenter, Prospective Study of a New Fully Covered Expandable Metal Biliary Stent for the Palliative Treatment of Malignant Bile Duct Obstruction

    Directory of Open Access Journals (Sweden)

    Bret T. Petersen


    Full Text Available Background and Study Aims. Endoscopic placement of self-expanding metal stents (SEMSs is indicated for palliation of inoperable malignant biliary obstruction. A fully covered biliary SEMS (WallFlex Biliary RX Boston Scientific, Natick, USA was assessed for palliation of extrahepatic malignant biliary obstruction. Patients and Methods. 58 patients were included in this prospective, multicenter series conducted under an FDA-approved IDE. Main outcome measurements included (1 absence of stent occlusion within six months or until death, whichever occurred first and (2 technical success, need for reintervention, bilirubin levels, stent patency, time to stent occlusion, and adverse events. Results. Technical success was achieved in 98% (57/58, with demonstrated acute removability in two patients. Adequate clinical palliation until completion of followup was achievedin 98% (54/55 of evaluable patients, with 1 reintervention due to stent obstruction after 142 days. Mean total bilirubin decreased from 8.9 mg/dL to 1.2 mg/dL at 1 month. Device-related adverse events were limited and included 2 cases of cholecystitis. One stent migrated following radiation therapy. Conclusions. The WallFlex Biliary fully covered stent yielded technically successful placement with uncomplicated acute removal where required, appropriate reduction in bilirubin levels, and low rates of stent migration and occlusion. This SEMS allows successful palliation of malignant extrahepatic biliary obstruction.

  20. Self-Expanding Metal Stenting for Palliation of Patients with Malignant Colonic Obstruction: Effectiveness and Efficacy on 255 Patients with 12-Month's Follow-up (United States)

    Meisner, Søren; González-Huix, Ferran; Vandervoort, Jo G.; Repici, Alessandro; Xinopoulos, Dimitrios; Grund, Karl E.; Goldberg, Paul; Registry Group, The WallFlex Colonic


    Background. Self-expanding metal stents can alleviate malignant colonic obstruction in incurable patients and avoid palliative stoma surgery. Objective. Evaluate stent effectiveness and safety on palliation of patients with malignant colorectal strictures. Design. Two prospective, one Spanish and one global, multicenter studies. Settings. 39 centers (22 academic, 17 community hospitals) from 13 countries. Patients. A total of 257 patients were enrolled, and 255 patients were treated with a WallFlex uncovered enteral colonic stent. Follow-up was up to 12 months or until death or retreatment. Interventions(s). Self-expanding metal stent placement. Main Outcome Measures. Procedural success, clinical success, and safety. Results. Procedural success was 98.4% (251). Clinical success rates were 87.8% at 30 days, 89.7% at 3 months, 92.8% at 6 months, and 96% at 12 months. Overall perforation rate was 5.1%. Overall migration rate was 5.5%. Overall death rate during follow-up was 48.6% (124), with 67.7% of deaths related to the patient's colorectal cancer, unrelated in 32.3%. Only 2 deaths were related to the stent or procedure. Limitations. No control group. Conclusions. The primary palliative option for patients with malignant colonic obstruction should be self-expanding metal stent placement due to high rates of technical success and efficacy in symptom palliation and few complications. PMID:22761609

  1. Self-Expanding Metal Stenting for Palliation of Patients with Malignant Colonic Obstruction: Effectiveness and Efficacy on 255 Patients with 12-Month's Follow-up

    Directory of Open Access Journals (Sweden)

    Søren Meisner


    Full Text Available Background. Self-expanding metal stents can alleviate malignant colonic obstruction in incurable patients and avoid palliative stoma surgery. Objective. Evaluate stent effectiveness and safety on palliation of patients with malignant colorectal strictures. Design. Two prospective, one Spanish and one global, multicenter studies. Settings. 39 centers (22 academic, 17 community hospitals from 13 countries. Patients. A total of 257 patients were enrolled, and 255 patients were treated with a WallFlex uncovered enteral colonic stent. Follow-up was up to 12 months or until death or retreatment. Interventions(s. Self-expanding metal stent placement. Main Outcome Measures. Procedural success, clinical success, and safety. Results. Procedural success was 98.4% (251. Clinical success rates were 87.8% at 30 days, 89.7% at 3 months, 92.8% at 6 months, and 96% at 12 months. Overall perforation rate was 5.1%. Overall migration rate was 5.5%. Overall death rate during follow-up was 48.6% (124, with 67.7% of deaths related to the patient’s colorectal cancer, unrelated in 32.3%. Only 2 deaths were related to the stent or procedure. Limitations. No control group. Conclusions. The primary palliative option for patients with malignant colonic obstruction should be self-expanding metal stent placement due to high rates of technical success and efficacy in symptom palliation and few complications.

  2. Addressing Palliative Sedation during Expert Consultation: A Descriptive Analysis of the Practice of Dutch Palliative Care Consultation Teams.

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    Patrick Hoek

    Full Text Available Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation.We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations. We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations.Of the 44,443 initial consultations, most were requested by general practitioners (73% and most concerned patients with cancer (86%. Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51-2.12 or COPD (OR 1.39; 95% CI: 1.15-1.69 than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22-1.40, agitation/delirium (OR 1.57; 95% CI: 1.47-1.68, exhaustion (OR 2.89; 95% CI: 2.61-3.20, euthanasia-related questions (OR 2.65; 95% CI: 2.37-2.96 or existential issues (OR 1.55; 95% CI: 1.31-1.83.In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life.

  3. What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient's Expectations and Needs when Being Admitted to a Palliative Care Unit.

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    Eva K Masel

    Full Text Available The aims of the study were to examine a patients' knowledge of palliative care, b patients' expectations and needs when being admitted to a palliative care unit, and c patient's concept of a good palliative care physician.The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques.The results revealed four themes: (1 information about palliative care, (2 supportive care needs, (3 being treated in a palliative care unit, and (4 qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient's language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment.The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient's needs will enable medical teams to improve professional and individualized care.

  4. Developing a service model that integrates palliative care throughout cancer care: the time is now. (United States)

    Partridge, Ann H; Seah, Davinia S E; King, Tari; Leighl, Natasha B; Hauke, Ralph; Wollins, Dana S; Von Roenn, Jamie Hayden


    Palliative care is a fundamental component of cancer care. As part of the 2011 to 2012 Leadership Development Program (LDP) of the American Society of Clinical Oncology (ASCO), a group of participants was charged with advising ASCO on how to develop a service model integrating palliative care throughout the continuum of cancer care. This article presents the findings of the LDP group. The group focused on the process of palliative care delivery in the oncology setting. We identified key elements for models of palliative care in various settings to be potentially equitable, sustainable, feasible, and acceptable, and here we describe a dynamic model for the integrated, simultaneous implementation of palliative care into oncology practice. We also discuss critical considerations to better integrate palliative care into oncology, including raising consciousness and educating both providers and the public about the importance of palliative care; coordinating palliative care efforts through strengthening affiliations and/or developing new partnerships; prospectively evaluating the impact of palliative care on patient and provider satisfaction, quality improvement, and cost savings; and ensuring sustainability through adequate reimbursement and incentives, including linkage of performance data to quality indicators, and coordination with training efforts and maintenance of certification requirements for providers. In light of these findings, we believe the confluence of increasing importance of incorporation of palliative care education in oncology education, emphasis on value-based care, growing use of technology, and potential cost savings makes developing and incorporating palliative care into current service models a meaningful goal.

  5. The palliative management of fungating malignant wounds. (United States)

    Grocott, P


    This study focused on the palliative management of fungating malignant wounds and individual experiences of living with such a wound. Dressings were evaluated for the ability to contain these wounds and reduce their impact on daily life. The project extended to collaboration with industry for the development and evaluation of dressings designed to meet patient needs. A longitudinal multiple case study design was adopted. The methodology evolved through three principal phases: quasi-experimental design; emergent collaborative design; and emergent theory-driven evaluation. The radical departure from the initial approach was in response to the methodological problems encountered in a study of individuals with uncontrolled disease. A non-probability sampling plan was adopted, mainly because of the lack of homogeneity in the patient population; 45 participants were included. The length of time patients remained in the study depended on how long they lived. This ranged from a few days to more than two years. A sampling plan was, however, adopted for the data collection. The study had a dual focus: methodology, and the generation of explanations for dressing performance and the management of fungating wounds. The methodological aspect included development of the Teler system as a method of measuring dressing performance against goals of optimal practice in fungating wound management. The second component was a system of reasoning developed as an analytical strategy for abstracting general issues from individual case study data in order to construct explanations. Theory was used to generalize beyond the individual cases. Two forms of explanation for fungating wound management were constructed. These included explanations of individual experiences of living with such a wound and knowledge of the elements of fungating wound management. The impact on the individual was explained in terms of the stigma attached to public disability and a revulsion in society for uncontrolled

  6. Interprofessional collaboration in palliative nursing: what is the patient-family role? (United States)

    McDonald, Christine; McCallin, Antoinette


    Interprofessional collaboration occurs when health professionals from different disciplines work together to identify needs, solve problems, make joint decisions on how best to proceed, and evaluate outcomes collectively. Interprofessional collaboration supports patient-centred care and takes place through teamwork. Team interactions, wider organizational issues, and environmental structures, such as safety, quality, efficiency and effectiveness issues influence this model of care. These broader contextual influences affect practice where there are tensions between the ideals of interprofessional collaboration and the realities of practice. This is evident when the patient and family position in interprofessional collaboration is considered. This article will discuss factors that affect interprofessional collaboration in relation to patients and families in palliative care. First, a definition of interprofessional collaboration is given, followed by an outline of the need for interprofessional collaboration. A brief discussion of key issues that influence collaboration follows, and a review of the implications for practice is presented.

  7. Biofield therapies for symptom management in palliative and end-of-life care. (United States)

    Henneghan, Ashley M; Schnyer, Rosa N


    Terminally ill patients experience negative symptoms at end of life (EOL) that hinder well-being and quality of life (QOL). Current intervention strategies are not always effective or feasible. A focused literature review to evaluate the use of biofield therapies (ie, Therapeutic Touch, Healing Touch, and Reiki) to manage the symptoms in EOL revealed no studies on the use these therapies, specifically in this population. Evidence from studies on relevant populations (patients with cancer, elderly patients, and patients experiencing chronic pain), which addressed the outcomes relevant to palliative and EOL care (EOLC; pain levels, changes in psychological symptoms, well-being, and QOL), supports the use of biofield therapies in relieving pain, improving QOL and well-being, and reducing psychological symptoms of stress. Further research to assess the use of biofield therapies in EOLC is clearly needed.

  8. Risk Factors for Anticipatory Grief in Family Members of Terminally Ill Veterans Receiving Palliative Care Services. (United States)

    Burke, Laurie A; Clark, Karen A; Ali, Khatidja S; Gibson, Benjamin W; Smigelsky, Melissa A; Neimeyer, Robert A


    Anticipatory grief is the process associated with grieving the loss of loved ones in advance of their inevitable death. Because anticipatory grief has been associated with a variety of outcomes, risk factors for this condition deserve closer consideration. Fifty-seven family members of terminally ill, hospice-eligible veterans receiving palliative care services completed measures assessing psychosocial factors and conditions. Elevated anticipatory grief was found in families characterized by relational dependency, lower education, and poor grief-specific support, who also experienced discomfort with closeness and intimacy, neuroticism, spiritual crisis, and an inability to make sense of the loss. Thus, in this sample, anticipatory grief appears to be part of a cluster of factors and associated distress that call for early monitoring and possible intervention.

  9. Palliative care team visits. Qualitative study through participant observation

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    María del Mar Alfaya Góngora


    Full Text Available Objectives:To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants.Methods:A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed.Results:The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources.Conclusion:Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.

  10. Attachment theory and spirituality: two threads converging in palliative care? (United States)

    Loetz, Cécile; Müller, Jakob; Frick, Eckhard; Petersen, Yvonne; Hvidt, Niels Christian; Mauer, Christine


    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.

  11. Attachment Theory and Spirituality: Two Threads Converging in Palliative Care?

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    Cécile Loetz


    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.

  12. Spirituality in palliative home care: a framework for the clinician

    NARCIS (Netherlands)

    Vermandere, M.; Lepeleire, J. De; Mechelen, W. van; Warmenhoven, F.C.; Thoonsen, B.A.; Aertgeerts, B.


    PURPOSE: Spiritual care at the end of life remains poorly understood despite its promotion by the World Health Organisation. The purpose of this paper was to develop a consensus-based framework of the main elements of spiritual care in palliative home care. METHODS: Expert meeting using the nominal

  13. [The role of the mobile palliative care team nurse]. (United States)

    Chrétien, Sophie


    The mobile palliative care and support team nurse works in different departments within the hospital. The clinical situation of a patient enables the team to identify in what ways she is declining and thereby participate in the care management in order to favour the patient's return home.

  14. Acceptance of dying: a discourse analysis of palliative care literature. (United States)

    Zimmermann, Camilla


    The subject of death denial in the West has been examined extensively in the sociological literature. However, there has not been a similar examination of its "opposite", the acceptance of death. In this study, I use the qualitative method of discourse analysis to examine the use of the term "acceptance" of dying in the palliative care literature from 1970 to 2001. A Medline search was performed by combining the text words "accept or acceptance" with the subject headings "terminal care or palliative care or hospice care", and restricting the search to English language articles in clinical journals discussing acceptance of death in adults. The 40 articles were coded and analysed using a critical discourse analysis method. This paper focuses on the theme of acceptance as integral to palliative care, which had subthemes of acceptance as a goal of care, personal acceptance of healthcare workers, and acceptance as a facilitator of care. For patients and families, death acceptance is a goal that they can be helped to attain; for palliative care staff, acceptance of dying is a personal quality that is a precondition for effective practice. Acceptance not only facilitates the dying process for the patient and family, but also renders care easier. The analysis investigates the intertextuality of these themes with each other and with previous texts. From a Foucauldian perspective, I suggest that the discourse on acceptance of dying represents a productive power, which disciplines patients through apparent psychological and spiritual gratification, and encourages participation in a certain way to die.

  15. Living on borrowed time: experiences in palliative care.

    NARCIS (Netherlands)

    Groot, M.M.; Derksen, E.W.C.; Crul, B.J.P.; Grol, R.P.T.M.; Vernooij-Dassen, M.J.F.J.


    OBJECTIVE: To gain insight into the experiences of a palliative care patient and her husband who were living on borrowed time. METHODS: A qualitative single case design was used. Systematic content analysis of the interview data, obtained in an in-depth semi-structured interview, from the husband an

  16. Palliative care: a challenge for orthopaedic nursing care. (United States)

    Watters, Carol L; Harvey, Carol V; Meehan, Anita J; Schoenly, Lorry


    Patients who face chronic, incurable, or life-ending musculoskeletal conditions often receive inadequate care either due to a lack of caregiver awareness or inattention to maintaining the highest quality at the end of life. Palliative care focuses on the comprehensive physical, psychological, social, spiritual, and existential needs of patients with life-threatening or debilitating illness. Orthopaedic nurses and all nurses in general are challenged to incorporate palliative care principles into care planned with patients and families facing end-of-life issues. This article addresses the leadership role the National Association of Orthopaedic Nurses (NAON) has taken to develop a consensus document which endorses the Last Acts Precepts of Palliative Care and affirms the need for palliative care with patients who experience life-threatening illness. A case study is used to illustrate the opportunity a multidisciplinary team has to center care on the individual, while remaining sensitive to the holistic needs of the patient for self-determination at the end of life.

  17. Palliative Rehabilitation: Call for an everyday and activity perspective

    DEFF Research Database (Denmark)

    la Cour, Karen

    professionals can learn from each other. One of the challenges raised by hospices in the turn towards rehabilitation in palliative care is the understanding and awareness of how to address issues related to forthcoming death. This paper discusses how occupational therapist meet the challenges of integrating...

  18. Palliative Care for Extremely Premature Infants and Their Families (United States)

    Boss, Renee D.


    Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining…

  19. Symptoms in the palliative phase of children with cancer.

    NARCIS (Netherlands)

    Theunissen, J.M.J.; Hoogerbrugge, P.M.; Achterberg, T. van; Prins, J.B.; Vernooij-Dassen, M.J.F.J.; Ende, C.H.M. van den


    BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address those symptoms. PROCEDURE: Forty parents of children w

  20. Moral differences in deep continuous palliative sedation and euthanasia. (United States)

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


    In palliative care there is much debate about which end of life treatment strategies are legitimate and which are not. Some writers argue that there is an important moral dividing-line between palliative sedation and euthanasia, making the first acceptable and the latter not. We have questioned this. In a recent article, Lars Johan Materstvedt has argued that we are wrong on two accounts: first, that we fail to account properly for the moral difference between continuous deep palliative sedation at the end of life and euthanasia, and, second, that we fail to account properly for the difference between permanent loss of consciousness and death. Regarding the first objection, we argue that Materstvedt misses the point: we agree that there is a difference in terms of intentions between continuous deep palliative sedation and euthanasia, but we question whether this conceptual difference makes up for a moral difference. Materstvedt fails to show that it does. Regarding the second objection, we argue that if nothing else is at stake than the value of the patient's life, permanent unconsciousness and death are morally indifferent.

  1. Issues in Rural Palliative Care: Views from the Countryside (United States)

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


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

  2. Intercultural palliative care: do we need cultural competence? (United States)

    Gunaratnam, Yasmin


    Recognition of the importance of 'cultural competence' is now central to health care policy and to nurse education and training across the international spectrum. Detailed engagement with models of cultural competence is comparatively recent in palliative care nursing. This article presents the findings from a development project on elders and carers from 'minority ethnic' groups, funded by the Department of Health, to increase awareness of palliative care and to improve understanding of the needs of these groups of service users. The article describes the experiences of nurses involved in the delivery of palliative care who were interviewed in focus groups as a part of the project. It draws attention to the complicated relationships between cultural knowledge and practice and to the non-rational and visceral dimensions of intercultural care. These aspects of nursing are marginalised in current approaches to cultural competence, which emphasise the rational acquisition and application of cultural knowledge and skills by practitioners. It is suggested that recognition of these marginalised experiences can contribute to the development of new approaches to intercultural nursing that are also more attuned to the ethos and values of palliative care.

  3. The Nurses' Knowledge and Attitudes towards the Palliative Care (United States)

    Ayed, Ahmad; Sayej, Sumaya; Harazneh, Lubna; Fashafsheh, Imad; Eqtait, Faeda


    Background: Palliative care (PC) is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems like physical, psychosocial and…

  4. Barriers to palliative radiotherapy referral: A Canadian perspective

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    Samant, Rajiv S.; Fitzgibbon, Edward; Meng, Joanne; Graham, Ian D. [Univ. of Ottawa. Ottawa, ON (Canada)


    Radiotherapy is an effective but underutilized treatment modality for cancer patients. We decided to investigate the factors influencing radiotherapy referral among family physicians in our region. A 30-item survey was developed to determine palliative radiotherapy knowledge and factors influencing referral. It was sent to 400 physicians in eastern Ontario (Canada) and the completed surveys were evaluated. The overall response rate was 50% with almost all physicians seeing cancer patients recently (97%) and the majority (80%) providing palliative care. Approximately 56% had referred patients for radiotherapy previously and 59% were aware of the regional community oncology program. Factors influencing radiotherapy referral included the following: waiting times for radiotherapy consultation and treatment, uncertainty about the benefits of radiotherapy, patient age, and perceived patient inconvenience. Physicians who referred patients for radiotherapy were more than likely to provide palliative care, work outside of urban centres, have hospital privileges and had sought advice from a radiation oncologist in the past. A variety of factors influence the referral of cancer patients for radiotherapy by family physicians and addressing issues such as long waiting times, lack of palliative radiotherapy knowledge and awareness of Cancer Centre services could increase the rate of appropriate radiotherapy patient referral.

  5. Multiprofessional team approach in palliative care units in Japan. (United States)

    Maeyama, Etsuko; Kawa, Masako; Miyashita, Mitsunori; Ozawa, Taketoshi; Futami, Noriko; Nakagami, Yuriko; Sugishita, Chieko; Kazuma, Keiko


    Health-care providers engaged in palliative care experience difficulty with the practice of team care. However, the details of the difficulties have not been not clarified. To obtain an overview of team care in the Japanese palliative inpatient care setting, a descriptive and cross-sectional study was performed. The participants were physicians, nurses, dietitians, medical social workers (MSWs), and pharmacists. A representative from each discipline was selected. They were asked about their participation in services provided by government-approved palliative care units (PCUs) and the practice of team care. A total of 38 institutions participated in this study. In these institutions, 97% of physicians, 37% of dietitians, 39% of MSWs, 27% of pharmacists, and 13% of physical therapists attended PCU care meetings once a week or more, and 35% of religious workers and 11% of counselors attended. About 70% of institutions held regular care meetings with more than three types of health-care providers. Physicians and nurses had different perceptions regarding the practice of team care. The former had a positive perception of team care and the latter had a negative perception. In addition, nurses' perception of overall team care was related to their perception of care meetings ( P=0.052) and the number of types of professional participating in care meetings ( P=0.054). To promote team care in the Japanese palliative care setting, it is necessary to consider a practical standard of team care, and to conduct effective care meetings.

  6. Geritalk: communication skills training for geriatric and palliative medicine fellows. (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


    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 skills practice (mean 4.3 on 5-point scale). In sum, the intensive 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.

  7. Reporting characteristics of cancer pain: A systematic review and quantitative analysis of research publications in palliative care journals

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    Senthil P Kumar


    Full Text Available Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model.

  8. Effectiveness of "palliative care information booklet" in enhancing nurses′ knowledge

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    Anita David


    Full Text Available Context: Patients diagnosed with a disease like cancer require not only physical control of disease but also they need psychological reassurance, social and spiritual support in coming to terms with their disease. Nurses working in the specialized cancer hospitals play a significant role in the care of terminally ill patients. They must be knowledgeable, skilled and sensitive to the needs of these patients and their families in order to provide active, holistic care. Aims: In this study, we attempted to assess the level of knowledge about palliative care among nurses working in the oncology department using a self administered structured questionnaire and also to assess the effectiveness of information booklet designed on various aspects of palliative care on their knowledge. Settings and Design: Indo American Cancer Hospital, Hyderabad, AP, India. The design adopted for this study was One Group pretest - posttest, pre - experimental design. Materials and Methods: Hundred nurses working in Indo American Cancer Hospital, Hyderabad, AP, India were selected by using the non probability purposive sampling technique. A structured self administered questionnaire was prepared and administered as a pretest. An information booklet was developed pertaining to the general concepts of palliative care, care components (physical, social, emotional and spiritual and role of the nurse in palliative care and it was given to the participants. As a post test, the same questionnaire was re-administered after four days to the same study subjects. Pretest and post test knowledge scores were compared and the findings were analyzed statistically. Statistical analysis used : Microsoft Excel and Statistical Package for Social Science package. Results: The post test scores were significantly higher than the pretest knowledge scores, which indicate that the developed information booklet regarding palliative care was highly effective in enhancing the knowledge levels of the

  9. Hospice and palliation in the English-speaking Caribbean. (United States)

    Macpherson, Cheryl Cox; Chiochankitmun, Nina; Akpinar-Elci, Muge


    This article presents empirical data on the limited availability of hospice and palliative care to the 6 million people of the English-speaking Caribbean. Ten of the 13 nations therein responded to a survey and reported employing a total of 6 hospice or palliative specialists, and having a total of 15 related facilities. The evolving socioeconomic and cultural context in these nations bears on the availability of such care, and on the willingness to report, assess, and prioritize pain, and to prescribe opiates for pain. Socioeconomics and culture also impinge on what medications and modalities of care are routinely available for pain or other conditions and can challenge professionalism, empathy, and responsiveness to patients' unrelieved pain. Although all respondents report having a protocol for pain management, hospice, or end-of-life care, their annual medical use of opiates is well below the global mean. The International Narcotics Control Board (INCB), which monitors such use, encourages Caribbean and other low- and middle-income countries to increase their use of opiates to treat pain, and to overcome both unfounded fears of addiction and overly restrictive interpretation of related laws and regulations. Contextual considerations like those described here are important to the success of policies and capacity-building programs aiming to increase access to hospice and palliation, and perhaps to improving other aspects of health and healthcare. Exploring and responding to the realities of socioeconomic and cultural conditions will enhance public and policy dialogue and improve the design of interventions to increase access to palliative and hospice care. Improving access to palliative and hospice care in the Caribbean demonstrates beneficence and helps to fulfill human rights conventions.


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    A. P. Rebrov


    Full Text Available Objective: to estimate the rehabilitation  or palliative care needs of patients with spondyloarthritis  (SpA and to determine the specific features of palliative care in them.Subjects and methods. The literature on the investigated problem was analyzed using the electronic resources of Pubmed,  Medline,  and E-library. The authors obtained data based on the prospective follow-up of 182 patients with SpA in January 2010 to March 2014 (PROGRESS study. The degree of axial skeletal immobility (Bath Ankylosing Spondylitis Metrology Index (BASMI was estimated; the presence of irreversible organ changes (uveitis-induced visual loss, chronic renal failure due to amyloidosis, etc., and X-ray changes of the joints and spine were specified. The number of people with varying degrees of disability and that of those needing surgery were taken into account.Results. The investigation showed that mobility changes and disability might progress rapidly in patients with SpA: in 2010 to 2014, the number of disable patients with SpA increased from 20.5 to 48.9%. In 2014, more than one third (37.8% of the patients needed rehabilitation  and orthopedic  correction; 5 (2.74% patients had IV functional class and required nursing and palliative care.Conclusion. SpA is a chronic disease that can lead to a rapid functional impairment. Chronic  pain, loss of mobility, vision deterioration, amyloidosis, and other causes show the need for palliative care in some patients with SpA. Special tools for evaluating the health status of patients with SpA should be elaborated to determine whether the patient needs rehabilitation  and palliative care.

  11. Heart Disease and African Americans (United States)

    ... Minority Population Profiles > Black/African American > Heart Disease Heart Disease and African Americans Although African American adults are ... were 30 percent more likely to die from heart disease than non-Hispanic whites. African American women are ...

  12. Palliative care in advanced kidney disease: a nurse-led joint renal and specialist palliative care clinic. (United States)

    Harrison, Kerry; Watson, Sarah


    The National Service Framework for Renal Services Part 2 identifies quality requirements for end-of-life care for individuals with kidney failure, recognizing the potential to forge closer relationships between renal and specialist palliative care providers. This article describes a pilot project set up by two Clinical Nurse Specialists, one working in hospice specialist palliative care and the other in renal palliative care within an acute trust. The purpose of the pilot was to work in collaboration to run a streamlined nurse-led clinic that would meet the palliative care needs of chronic kidney disease (CKD) Stage 5 patients and their carers. To achieve this the clinic would have to provide optimal symptom management, empower patients to make their own choices, and support them with advance care planning underpinned by the End of Life Care Strategy. The partnership also aimed to promote service improvement and practice development using transference of knowledge, skills, and expertise. Initial informal feedback, including a very small patient survey, suggests that the clinic was well received by patients, carers, and other health professionals. The clinic is ongoing and deserves more formal evaluation to encourage future service development.

  13. Impact of a home-based social welfare program on care for palliative patients in the Basque Country (SAIATU Program

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    Molina Emilio Herrera


    Full Text Available Abstract Background SAIATU is a program of specially trained in-home social assistance and companionship which, since February 2011, has provided support to end-of-life patients, enabling the delivery of better clinical care by healthcare professionals in Osakidetza (Basque Health Service, in Guipúzcoa (Autonomous Community of the Basque Country. In January 2012, a retrospective observational study was carried out, with the aim of describing the characteristics of the service and determining if the new social service and the associated socio-health co-ordination had produced any effect on the use of healthcare resources by end-of-life patients. The results of a comparison of a cohort of cases and controls demonstrated evidence that the program could reduce the use of hospital resources and promote the continuation of living at home, increasing the home-based activity of primary care professionals. The objective of this study is to analyse whether a program of social intervention in palliative care (SAIATU results in a reduction in the consumption of healthcare resources and cost by end-of-life patients and promotes a shift towards a more community-based model of care. Method/design Comparative prospective cohort study, with randomised selection of patients, which will systematically measure patient characteristics and their consumption of resources in the last 30 days of life, with and without the intervention of a social support team trained to provide in-home end-of-life care. For a sample of approximately 150 patients, data regarding the consumption of public healthcare resources, SAIATU activity, home hospitalisation teams, and palliative care will be recorded. Such data will also include information dealing with the socio-demographic and clinical characteristics of the patients and attending carers, as well as particular characteristics of patient outcomes (Karnofsky Index, and of the outcomes of palliative care received (Palliative

  14. Study protocol: delayed intervention randomised controlled trial within the Medical Research Council (MRC Framework to assess the effectiveness of a new palliative care service

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    Hart Sam


    Full Text Available Abstract Background Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. Methods/Design Using the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS. We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patients newly referred to the new service were randomised to either receive the palliative care service immediately (fast-track or after a 12-week wait (standard best practice. Face to face interviews were conducted at baseline (before intervention, and at 4–6, 10–12 (before intervention for the standard-practice group, 16–18 and 22–24 weeks with patients and their carers using standard questionnaires to assess symptoms, palliative care outcomes, function, service use and open comments. Ethics committee approval was granted separately for the qualitative phase and then for the trial. Discussion We publish the protocol trial here, to allow methods to be reviewed in advance of publication of the results. The MRC Framework for the Evaluation of Complex Interventions was helpful in both the design of the service, methods for evaluation in convincing staff and the ethics committee to accept the trial. The research will provide valuable

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

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    Miles Gail


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


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    Full Text Available ABSTRACT: BACKGROUND: Palliation reduces the severity of disease symptoms, rather than reversing its progression or providing a cure. Metast atic cancer cervix (Ca Cx is incurable by surgery, radiation or chemotherapy, but these modali ties are useful for palliation. Globally about five to six lakh new cases of carcinoma cervi x are diagnosed every year. Of these, one lakh cases are diagnosed in India of which 25.0% are fro m West Bengal only. OBJECTIVES: Our objective was to study the role of palliation in Sta ge IV Carcinoma Cervix. SETTINGS AND DESIGN: During the study period of five years from January 2 007 to December 2011, consecutive seventy five new cases of stage IV carc inoma cervix diagnosed at Netaji Subhas Chandra Bose Cancer Research Institute, Kolkata, we re included in our study. MATERIALS AND METHODS: Clinical examination with relevant investigations l ike kidney function tests (KFT, biopsy, cystoscopy, CT scan etc were done for diagno sis & staging. Treatment was decided based on woman's age, general health and the locati on & type of the tumour. Treatment options were surgery, radiotherapy (RT, chemotherapy (CT an d simple palliation. In our study, combined CT+RT was done in 18.67% patients most of w ho presented with Stage IV disease. Radiation was given as brachytherapy following telet herapy. Chemotherapy was used as adjunct to RT or for palliation or as neo-adjuvant c hemotherapy (NACT, most commonly using paclitaxel (135mg/square metre, cisplatin (50mg/ squ are metre and 5- fluorouracil (600mg/ square metre. At times, chemotherapy could provide pa in relief only. Vault smear and metastatic workup was done during follow-up visits ev ery 8-12 weeks after treatment completion. RESULTS: Majority of patients belonged to the age group 42-69 years with a median age of 53 years. Bladder involvement was see n in 15(20.0% cases, bowel involvement in 14(19.0% and distant metastasis in 46(61.0% ca ses. Most cases were of Squamous

  17. Depression and African Americans (United States)

    ... You are here Home » Depression And African Americans Depression And African Americans Not “Just the Blues” Clinical ... or spiritual communities. Commonly Asked Questions about Clinical Depression How do I get help for clinical depression? ...

  18. Towards a standardized method of developing quality indicators for palliative care: protocol of the Quality indicators for Palliative Care (Q-PAC) study.

    NARCIS (Netherlands)

    Leemans, K.; Cohen, J.; Francke, A.L.; Stichele, R. Vander; Claessen, S.J.J.; Block, L. van den; Deliens, L.


    Background: In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive an

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

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


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

  20. Systematic quality monitoring for specialized palliative care services: development of a minimal set of wuality indicators for palliative care study (QPAC).

    NARCIS (Netherlands)

    Leemans, K.; Deliens, L.; Block, L. van den; Stichele, R. Vander; Francke, A.L.; Cohen, J.


    Background: A feasibility evaluation of a comprehensive quality indicator set for palliative care identified the need for a minimal selection of these indicators to monitor quality of palliative care services with short questionnaires for the patients, caregivers, and family carers. Objectives: To d

  1. Palliative care provision for patients with chronic obstructive pulmonary disease

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    Yohannes Abebaw


    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

  2. A survey of chaplains' roles in pediatric palliative care: integral members of the team. (United States)

    Lyndes, Kathryn A; Fitchett, George; Berlinger, Nancy; Cadge, Wendy; Misasi, Jennifer; Flanagan, Erin


    To date, the field of health care chaplaincy has had little information about how pediatric palliative care (PPC) programs meet the spiritual needs of patients and families. We conducted a qualitative study consisting of surveys of 28 well-established PPC programs in the United States followed by interviews with medical directors and professional chaplains in 8 randomly selected programs among those surveyed. In this report, we describe the PPC chaplain activities, evidence regarding chaplain integration with the PPC team, and physician and chaplain perspectives on the chaplains' contributions. Chaplains described their work in terms of processes such as presence, while physicians emphasized outcomes of chaplains' care such as improved communication. Learning to translate what they do into the language of outcomes will help chaplains improve health care colleagues' understanding of chaplains' contributions to care for PPC patients and their families. In addition, future research should describe the spiritual needs and resources of PPC patients and families and examine the contribution chaplains make to improved outcomes for families and children facing life-limiting illnesses.

  3. Linguistic Imperialism: African Perspectives. (United States)

    Phillipson, Robert


    Responds to an article on aspects of African language policy and discusses the following issues: multilingualism and monolingualism, proposed changes in language policy from the Organization for African Unity and South African initiatives, the language of literature, bilingual education, and whose interests English-language teaching is serving.…

  4. Improving Vocational Rehabilitation Access and Return to Work and Career Outcomes among African American Wounded Warriors, Gulf War, and Vietnam War Era Veterans with Disabilities: A White Paper Series (United States)

    Moore, Corey L., Ed.: Johnson, Jean E., Ed.; Washington, Andre L., Ed.


    The purpose of this monograph is to present documents that discuss issues related to improving access to vocational rehabilitation services and return to work rates of African American Wounded Warriors, Gulf War and Vietnam War Era veterans with disabilities. This monograph also includes a review of relevant literature on barriers to employment…

  5. Twin pregnancy in a Fontan-palliated patient. (United States)

    Nair, Anupama; Radhakrishnan, Sitaraman; Iyer, Krishna S


    The Fontan connection, originally described in 1971, is used to provide palliation for patients with many forms of CHDs that cannot support a biventricular circulation. An increasing number of females who have undergone these connections in childhood are now surviving into adulthood and some are becoming pregnant. We report a case of a 29-year-old woman who presented with a twin pregnancy at 33 weeks of gestation. She had significant deterioration of her cardiovascular status before the twin babies were delivered by emergency caesarean section owing to associated obstetric complications. This report also highlights the various maternal and fetal complications occurring in pregnancy of Fontan-palliated patients and suggests the need for meticulous pre-conception counselling and strict perinatal care.

  6. Radiologically placed tunneled peritoneal catheter in palliation of malignant ascites

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    Akinci, Devrim; Erol, Bekir; Ciftci, Tuerkmen T. [Hacettepe University, Faculty of Medicine, Department of Radiology, 06100 Ankara (Turkey); Akhan, Okan, E-mail: [Hacettepe University, Faculty of Medicine, Department of Radiology, 06100 Ankara (Turkey)


    The purpose of this study was to evaluate retrospectively the safety and effectiveness of radiologically placed tunneled peritoneal catheter in palliation of malignant ascites. Between July 2005 and June 2009, 41 tunneled peritoneal catheters were placed under ultrasonographic and fluoroscopic guidance in 40 patients (mean age, 55 years; 22 women) who had symptomatic malignant ascites. No procedure related mortality was observed. Major complication occurred in one patient (2.5%) in the form of serious bacterial peritonitis that necessitated catheter removal. Minor complications such as minor bacterial peritonitis, catheter dislodgement, tunnel infection, and catheter blockage occurred in 11 patients (27.5%). The mean duration of survival after catheter placement was 11.8 weeks. All patients expired of their primary malignancies in the follow-up. Radiologically placed tunneled peritoneal catheter is safe and effective in palliation of symptomatic malignant ascites.

  7. 'Busyness' and the preclusion of quality palliative district nursing care. (United States)

    Nagington, Maurice; Luker, Karen; Walshe, Catherine


    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.

  8. Medical students' views and ideas about palliative care communication training. (United States)

    Wittenberg-Lyles, Elaine M; Goldsmith, Joy; Ragan, Sandra L; Sanchez-Reilly, Sandra


    This study focused on the undergraduate medical student to identify views and ideas held toward palliative care communication training, pedagogical approaches to this training, and its perceived effectiveness and use in the medical field. Two focus groups consisting of fourth-year medical students were conducted, and their responses were analyzed using grounded theory categorization. Results indicated that students: (a) prefer to learn nonverbal communication techniques, (b) believe that natural ability and experience outweigh communication curriculum, (c) view the skill of breaking bad news as largely dependent on knowledge and expertise, and (d) prefer curriculum on palliative care and hospice to consist of information (eg, advance directives) rather than communication skills. Implications for these interpretive themes are discussed as well as future research and practice.

  9. Palliative home care: A designer′s perspective

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    Tigmanshu Bhatnagar


    Full Text Available The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice.

  10. Symptom management in palliative care and end of life care. (United States)

    Bookbinder, Marilyn; McHugh, Marlene E


    There is a need for generalist- and specialist-level palliative care clinicians proficient in symptom management and care coordination. Major factors contributing to this need include changed disease processes and trajectories, improved medical techniques and diagnostic testing, successful screening for chronic conditions, and drugs that often prolong life. The rapid progressive illnesses and deaths that plagued the first half of the twentieth century have been replaced in the twenty-first century by increased survival rates. Conditions that require ongoing medical care beyond a year define the current chronic illness population. Long years of survival are often accompanied by a reduced quality of life that requires more medical and nursing care and longer home care. This article reviews the management of selected symptoms in palliative and end of life care.

  11. Cultural competency and diversity among hospice palliative care volunteers. (United States)

    Jovanovic, Maja


    This case study examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area (GTA). Because of changing demographic trends and ethnic minorities underutilizing hospice palliative care services, this research examined the current state of culturally competent care in a hospice setting, and the challenges to providing culturally competent care in a hospice in the GTA. A case study was conducted with a hospice and included in-depth interviews with 14 hospice volunteers. The findings reveal that volunteers encountered cultural clashes when their level of cultural competency was weak. Second, volunteers revealed there was a lack of adequate cultural competency training with their hospice, and finally, there was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers.

  12. Developing children's palliative care in Africa through beacon centres: lessons learnt. (United States)

    Downing, Julia D; Marston, Joan; Selwyn, Casey; Ross-Gakava, Laura


    Much progress has been made in the provision of palliative care across sub-Saharan Africa, however much still remains to be done, particularly in the area of children's palliative care (CPC). The Beacon Centres programme was set up in 2009, aimed at improving access to CPC in South Africa, Uganda and Tanzania through more and better-trained health professionals and CPC clinical services of a high standard. Having identified sites in each country to develop into CPC Beacon Centres, Navigators were identified who would be the 'champions' for CPC in those sites and lead a programme of training, mentorship and support. Five navigators (2 in Uganda and Tanzania and 1 in South Africa) were trained between September and December 2009. Following this they undertook CPC needs assessments at the 3 centres and set up and delivered a six-month CPC training programme, providing mentorship and support to students to enable them to integrate CPC into their workplaces. To date, 188 participants have commenced the six-month course, with 80 having completed it. CPC has been integrated into the activities of the centres and a CPC virtual resource centre set up in South Africa. The achievements from the Beacon project have been great and the work of the navigators immense, but as in all projects it has not been without its challenges. Lessons learnt include issues around: the focus of the project; the length and nature of the training; assessment; accreditation; the choice of navigators; mentoring; administrative support; co-ordination; the choice of project sites; and the integration of CPC into services. The need for CPC is not going to go away and it is therefore important that models of scaling-up are found that are not only practical, feasible, affordable and sustainable, but that focus on the outcome of improved CPC for all those who need it. It is hoped that the lessons shared from the Beacon Project will help in developing and implementing such models.

  13. Does the Culture of Modern Day Palliative Care Social Work Leave Room for Leadership?


    Davidson, Jason


    This paper describes research undertaken as part of an MA study in leadership. It draws on interviews with six high profile leaders at the fore front of end of life care sector in the UK. Its findings and emerging themes offer insights about the opportunities for social work leaders in palliative care in the future and how the profession and palliative care sector address current barriers to taking advantage of such opportunity. The main focus of this paper is leadership related to palliative...

  14. Changes in symptoms and pain intensity of cancer patients after enrollment in palliative care at home


    Dumitrescu, Luminita; van den Heuvel-Olaroiu, Marinela; van den Heuvel, Wim J. A.


    This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical characteristics were related to these changes. The analysis is based on 102 cancer patients. Data were collected through systematic registration during the palliative care process. At enrollment, patien...

  15. The view of pulmonologists on palliative care for patients with COPD: a survey study (United States)

    Duenk, RG; Verhagen, C; Dekhuijzen, PNR; Vissers, KCP; Engels, Y; Heijdra, Y


    Introduction Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results The 256 respondents (31.8%) covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2%) indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%), communication between pulmonologist and general practitioner (77%), and identification of the palliative phase (75.8%), while the latter was considered the most important aspect for improvement (67.6%). Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%), while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT). In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%). Conclusion To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification criteria. Furthermore, pulmonologists should improve their skills of palliative care, and the members of the SPCT should be better informed about the management of COPD to improve care during hospitalization. Communication between pulmonologist and general practitioner should be emphasized in training to improve

  16. Integration of palliative medicine into comprehensive cancer care. (United States)

    Lagman, Ruth; Walsh, Declan


    Because of the advent of disease-modifying agents for patients with malignancies, cancer is now a chronic illness. However, most cancer patients will experience significant symptoms and complications during the course of their illness or its treatment. In addition to their physical symptoms, patient and families are burdened with psychological, social, and spiritual difficulties. Palliative medicine addresses all these issues and complements attempts to cure the disease; it is an essential part of modern comprehensive cancer care.

  17. Philosophizing social justice in rural palliative care: Hayek's moral stone? (United States)

    Pesut, Barbara; Beswick, Frances; Robinson, Carole A; Bottorff, Joan L


    Increasingly, palliative care is being referred to as an essential programme and in some cases as a human right. Once it is recognized as such, it becomes part of the lexicon of social justice in that it can be argued that all members of society should have access to such care. However, this begs the question of how that care should be enacted, particularly in rural and remote areas. This question illustrates some of Friedrich Hayek's critiques of social justice. Hayek has likened social justice to a 'moral stone' arguing that social justice is meaningless to the extent that society is impersonal and as such cannot be just, only those individuals who make up that society can be just. When responsibility for justice is assigned to an impersonal society, ideas of social justice can become a clarion call for whom no one is directly accountable. This opens the door for questionable macro-level political agendas that have no capacity to enact the ideal, and worse, may suppress individual moral acts towards the desired end. Further, acts of interference at the macro level with the ideal of equal opportunity run the risk of disadvantaging other members of society. Instead, he has argued that a better approach lies in finding ways to induce and support individual moral acts that promote the human good. Hayek's arguments are particularly compelling for rural palliative care. In this paper we draw upon data from an ethnographic study in rural palliative care to illustrate the potential misfit between the ethical ideal of palliative care as expressed by rural participants and the narratives of social justice.

  18. Supportive and Palliative Care Research | Division of Cancer Prevention (United States)

    Supportive and palliative care research includes studies to prevent or treat the acute and chronic symptoms and morbidities related to cancer and its treatment, and to examine the effects of cancer and its treatment on quality of life and psychosocial issues and treatment strategies at the end of life. Active Projects can range from caregiver issues to geriatrics, physical functioning to cognitive dysfunction. | Examining symptoms and morbidities related to cancer, its treatment, quality of life and end of life.

  19. Intrathecal analgesia and palliative care: A case study

    Directory of Open Access Journals (Sweden)

    Naveen S Salins


    Full Text Available Intrathecal analgesia is an interventional form of pain relief with definite advantages and multiple complications. Administration of intrathecal analgesia needs a good resource setting and expertise. Early complications of intrathecal analgesia can be very distressing and managing these complications will need a high degree of knowledge, technical expertise and level of experience. Pain control alone cannot be the marker of quality in palliative care. A holistic approach may need to be employed that is more person and family oriented.

  20. [Laser palliative destruction of rectum carcinoma--case reports]. (United States)

    Hladík, P; Simkovic, D


    The palliative treatment of developed primary or recurrent rectum carcinoma is still an important issue in treatment of this disease. The aim of the surgery is in such case to remove the tumorous obstacle and to prevent the development of ileus, to reduce pain, to limit the volume of tumorous tissue, to prevent bleeding and possible incontinence or mucous secretion. The transanal laser thermodestruction of the tumor represents one of the possible ways of palliative treatment of rectum carcinoma. The method is very considerate even for the high risk patients. On the other hand it requires a short-term hospitalization. The method of transanal laser evaporisation of carcinoma is also important from the ethical point of view: in many cases it may prevent the creation of palliative derivative colostomy. This fact is very important especially in patients with the terminal stage of the malign carcinoma because they live the rest of their lives in acceptable conditions. The important benefits are described in three case histories. The method is presented as an urgent surgery in solution of ileus which is based on tumorous rectum stenosis.

  1. The impact of volunteering in hospice palliative care. (United States)

    Claxton-Oldfield, Stephen; Claxton-Oldfield, Jane


    The goal of this study was to examine the impact of hospice palliative care work on volunteers' lives. In-depth interviews were conducted with 23 direct-patient care volunteers. More than half of the volunteers became involved in hospice palliative care because of their own experiences with family members and/or friends who have died. Most of the volunteers reported that they were different now or had changed in some way since they have been volunteering (e.g., they had grown in some way, have learned how to keep things in perspective). In addition, most of the volunteers felt that their outlook on life had changed since they started volunteering (e.g., they were more accepting of death, and they learned the importance of living one day at a time). Volunteers reported doing a number of different things to prevent compassion fatigue or burnout (e.g., reading a book, listening to music, talking to others, and taking time off from volunteering). Most of the volunteers said that they would tell anyone who might be thinking of volunteering in hospice palliative care that it is a very rewarding activity and/or that they should try it. Finally, many of the volunteers offered suggestions for doing things differently in their programs.

  2. Cancer patients, emergencies service and provision of palliative care

    Directory of Open Access Journals (Sweden)

    Bruno Miranda


    Full Text Available SUMMARY Objective: To describe the clinical and sociodemographic profile of cancer patients admitted to the Emergency Center for High Complexity Oncologic Assistance, observing the coverage of palliative and home care. Method: Cross sectional study including adult cancer patients admitted to the emergency service (September-December/2011 with a minimum length of hospital stay of two hours. Student’s t-test and Pearson chi-square test were used to compare the means. Results: 191 patients were enrolled, 47.6% elderly, 64.4% women, 75.4% from the city of Recife and greater area. The symptom prevalent at admission was pain (46.6%. 4.2% of patients were linked to palliative care and 2.1% to home care. The most prevalent cancers: cervix (18.3%, breast (13.6% and prostate (10.5%; 70.7% were in advanced stages (IV, 47.1%; 39.4% without any cancer therapy. Conclusion: Patients sought the emergency service on account of pain, probably due to the incipient coverage of palliative and home care. These actions should be included to oncologic therapy as soon as possible to minimize the suffering of the patient/family and integrate the skills of oncologists and emergency professionals.

  3. Surgical palliation of gastric outlet obstruction in advanced malignancy (United States)

    Potz, Brittany A; Miner, Thomas J


    Gastric outlet obstruction (GOO) is a common problem associated with advanced malignancies of the upper gastrointestinal tract. Palliative treatment of patients’ symptoms who present with GOO is an important aspect of their care. Surgical palliation of malignancy is defined as a procedure performed with the intention of relieving symptoms caused by an advanced malignancy or improving quality of life. Palliative treatment for GOO includes operative (open and laparoscopic gastrojejunostomy) and non-operative (endoscopic stenting) options. The performance status and medical condition of the patient, the extent of the cancer, the patients prognosis, the availability of a curative procedure, the natural history of symptoms of the disease (primary and secondary), the durability of the procedure, and the quality of life and life expectancy of the patient should always be considered when choosing treatment for any patient with advanced malignancy. Gastrojejunostomy appears to be associated with better long term symptom relief while stenting appears to be associated with lower immediate procedure related morbidity. PMID:27648158

  4. Stomach-interposed cholecystogastrojejunostomy: A palliative approach for periampullary carcinoma

    Institute of Scientific and Technical Information of China (English)

    Chun-Yi Hao; Xiang-Qian Su; Jia-Fu Ji; Xin-Fu Huang; Bao-Cai Xing


    AIM: For patients of periampullary carcinoma found to be unresectable at the time of laparotomy, surgical palliation is the primary choice of treatment. Satisfactory palliation to maximize the quality of life with low morbidity and mortality is the gold standard for a good procedure.Our aim is to explore such a procedure as an alternative to the traditional ones.METHODS: A modified double-bypass procedure is performed by, in addition to the usual gastrojejunostomy,implanting a mushroom catheter from the gall bladder into the jejunum through the interposed stomach as an internal drainage. A retrospective review was performed including 22 patients with incurable periampullary carcinomas who underwent this surgery.RESULTS: Both jaundice and impaired liver function improved significantly after surgery. No postoperative deaths, cholangitis, gastrojejunal, biliary anastomotic leaks, recurrent jaundice or late gastric outlet obstruction occurred. Delayed gastric emptying occurred in two patients. The total surgical time was 150±26 min. The estimated blood loss was 160±25 mL. The mean length of hospital stay after surgery was 22±6 d. The mean survival was 8 mo (range 1.5-18 mo).CONCLUSION: In patients of unresectable periampullary malignancies, stomach-interposed cholecystogastrojejunostomy is a safe, simple and efficient technique for palliation.

  5. Palliative care for patients with end-stage liver disease. (United States)

    Larson, Anne M


    Liver disease results in over four million physician visits and over 750,000 hospitalizations per year in the USA. Those with chronic liver disease frequently progress to cirrhosis, end-stage liver disease (ESLD), and death. Patients with ESLD experience numerous complications, including muscle cramps, confusion (hepatic encephalopathy), protein calorie malnutrition, muscle wasting, fluid overload (ascites, edema), bleeding (esophagogastric variceal hemorrhage), infection (spontaneous bacterial peritonitis), fatigue, anxiety, and depression. Despite significant improvements in palliation of these complications, patients still suffer reduced quality of life and must confront the fact that their disease will often inexorably progress to death. Liver transplantation is a valid option in this setting, increasing the duration of survival and palliating many of the symptoms. However, many patients die waiting for an organ or are not candidates for transplantation due to comorbid illness. Others receive a transplant but succumb to complications of the transplant itself. Patients and families must struggle with simultaneously hoping for a cure while facing a life-threatening illness. Ideally, the combination of palliative care with life-sustaining therapy can maximize the patients' quality and quantity of life. If it becomes clear that life-sustaining therapy is no longer an option, these patients are then already in a system to help them with end-of-life care.

  6. Palliative care curriculum for speech-language pathology students. (United States)

    Mathisen, Bernice; Yates, Patsy; Crofts, Penny


    This paper reports on the experience of undergraduate speech-language pathology students at one university chosen for the implementation stage of the Palliative Care Curriculum for Undergraduates (PCC4U) Project. Funded by a government department for health and ageing through a national palliative care programme, the project was managed by a team of researchers from the discipline of nursing. The PCC4U project championed the inclusion of palliative care education as an integral part of medical, nursing, and allied healthcare undergraduate training. Of the pilot sites chosen for the PCC4U project, only one site, reported here, included both speech-language pathology and social work disciplines, providing an important opportunity for interdisciplinary collaboration on novel curriculum development in an area of mutual interest. This synergy served as an excellent foundation for ongoing opportunities for interdisciplinary teaching and learning in the university. Speech-language pathology students reported that the project was an invaluable addition to their education and preparation for clinical practice.

  7. Short-course palliative radiotherapy for uterine cervical cancer

    Energy Technology Data Exchange (ETDEWEB)

    Kim, Dong Hyun; Lee, Ju Hye; Ki, Yong Kan; Kim, Won Taek; Park, Dahl; Kim, Dong Won [Dept. of Radiation Oncology, Biomedical Research Institute, Pusan National University Hospital, Busan (Korea, Republic of); Nam, Ji Ho; Jeon, Sang Ho [Dept. of Radiation Oncology, Pusan National University Yangsan Hospital, Yangsan (Korea, Republic of)


    The purpose of this retrospective study was to evaluate the efficacy and feasibility of short-course hypofractionated radiotherapy (RT) for the palliation of uterine cervical cancer. Seventeen patients with cancer of the uterine cervix, who underwent palliative hypofractionated 3-dimensional conformal radiotherapy between January 2002 and June 2012, were retrospectively analyzed. RT was delivered to symptomatic lesions (both the primary mass and/or metastatic regional lymph nodes). The total dose was 20 to 25 Gy (median, 25 Gy) in 5 Gy daily fractions. The median follow-up duration was 12.2 months (range, 4 to 24 months). The median survival time was 7.8 months (range, 4 to 24 months). Vaginal bleeding was the most common presenting symptom followed by pelvic pain (9 patients). The overall response rates were 93.8% and 66.7% for vaginal bleeding control and pelvic pain, respectively. Nine patients did not have any acute side effects and 7 patients showed minor gastrointestinal toxicity. Only 1 patient had grade 3 diarrhea 1 week after completion of treatment, which was successfully treated conservatively. Late complications occurred in 4 patients; however, none of these were of grade 3 or higher severity. Short-course hypofractionated RT was effective and well tolerated as palliative treatment for uterine cervical cancer.

  8. Palliative treatment of malignant ascites: profile of catumaxomab

    Directory of Open Access Journals (Sweden)

    Lila Ammouri


    Full Text Available Lila Ammouri, Eric E PrommerMayo Clinic Hospice and Palliative Medicine Program, Mayo Clinic College of Medicine, Mayo Clinic Hospital, Scottsdale, AZ, USAAbstract: Malignant ascites is the abnormal accumulation of fluid in the peritoneal cavity associated with several intrapelvic and intra-abdominal malignancies. The development of ascites leads to significant symptoms and poor quality of life for the cancer patient. Available therapies for palliation include treatment of the underlying disease, but when there are no treatment options, the use of diuretics, implantation of drainage catheters, and surgical shunting techniques are considered. None of these symptom palliation options affect the course of disease. The development of trifunctional antibodies, which attach to specific overexpressed surface markers on tumor cells, and trigger an immune response leading to cytoreductive effects, represents a new approach to the management of malignant ascites. The purpose of this review is to highlight current therapies for malignant ascites and review data as to the effectiveness of a new trifunctional antibody, catumaxomab.Keywords: catumaxomab, ascites, trifunctional

  9. Nozick's experience machine and palliative care: revisiting hedonism. (United States)

    Barilan, Y Michael


    In refutation of hedonism, Nozick offered a hypothetical thought experiment, known as the Experience Machine. This paper maintains that end-of-life-suffering of the kind that is resistant to state-of-the-art palliation provides a conceptually equal experiment which validates Nozick's observations and conclusions. The observation that very many terminal patients who suffer terribly do no wish for euthanasia or terminal sedation is incompatible with motivational hedonism. Although irreversible vegetative state and death are equivalently pain-free, very many people loath the former even at the price of the latter. This attitude cannot be accounted for by hedonism. Following these observations, the goals of palliative care are sketched along four circles. The first is mere removal or mitigation of noxious symptoms and suffering. The second targets sufferings that stymie patients' life-plans and do not allow them to be happy, the third targets sufferings that interfere with their pursuance of other goods (palliation as a primary good). The fourth is the control of sufferings that do not allow the person to benefit from any human good whatsoever ("total pain" or critical suffering). Only in the fourth circle are people hedonists.

  10. Exploring the leadership role of the clinical nurse specialist on an inpatient palliative care consulting team. (United States)

    Stilos, Kalli; Daines, Pat


    Demand for palliative care services in Canada will increase owing to an aging population and the evolving role of palliative care in non-malignant illness. Increasing healthcare demands continue to shape the clinical nurse specialist (CNS) role, especially in the area of palliative care. Clinical nurse specialists bring specialized knowledge, skills and leadership to the clinical setting to enhance patient and family care. This paper highlights the clinical leadership role of the CNS as triage leader for a hospital-based palliative care consulting team. Changes to the team's referral and triage processes are emphasized as key improvements to team efficiency and timely access to care for patients and families.

  11. Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives.

    LENUS (Irish Health Repository)

    Bede, Peter


    Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive neurodegenerative condition. Optimal management requires a palliative approach from diagnosis with emphasis on patient autonomy, dignity and quality of life.

  12. Tendencies of institutionalization of palliative care in modern Russia: interdisciplinary analysis

    Directory of Open Access Journals (Sweden)

    Krom I.L.


    Full Text Available The analysis of the institutionalization of palliative care trends in contemporary Russian is given by the authors in the methodological plane of the system of social and structural functions (AGIL, proposed by Talcott Parsons. The medicalization of palliative care in Russia is considered by the authors from the perspective of the dysfunctional practices. It is noted that the legislative documents adopted in Russia define palliative care as palliative medical care. The organization of palliative care in Russia takes place simultaneously with the improvement of legal acts, which significantly slows down the process of becoming of palliative care to population and predetermines the limit of its availability. The principle of an integrative approach to the organization of palliative care was not reflected in the process of formation of the normative base. The interdisciplinary view on the organization of palliative care and increase of its availability will allow to verify and to overcome the dysfunctions in the organization of palliative care to the population.

  13. Care or custody? An evaluation of palliative care in prisons in North West England. (United States)

    Turner, Mary; Payne, Sheila; Barbarachild, Zephyrine


    This study aimed to evaluate health professionals' views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice.

  14. Negotiating the equivocality of palliative care: a grounded theory of team communicative processes in inpatient medicine. (United States)

    Ledford, Christy J W; Canzona, Mollie Rose; Cafferty, Lauren A; Kalish, Virginia B


    In the majority of U.S. hospitals, inpatient medicine teams make palliative care decisions in the absence of a formalized palliative system. Using a grounded theory approach, interviews with inpatient team members were systematically analyzed to uncover how participants conceptualize palliative care and how they regard the communicative structures that underlie its delivery. During analysis, Weick's model of organizing emerged as a framework that fit the data. The 39 participant inpatient team members discussed palliative care as primarily a communicative process. Themes describing the meaning of palliative care emerged around the concepts of receiver of care, timeline of care, and location of care. The emerging model included four stages in the communicative processes of inpatient palliative care: (a) interpret the need, (b) initiate the conversation, (c) integrate the processes, and (d) identify what works. In contrast to stable, focused palliative care teams or hospice care teams, which have prescribed patient populations and processes, the inpatient medicine team faces the equivocality of providing palliative care within a broader practice. This research offers a four-phase model to show how these inpatient teams communicate within this context. Implications for the provision of palliative care are discussed.

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

    DEFF Research Database (Denmark)

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


    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...... 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...... 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....

  16. Poverty, safety net programs, and African Americans' mental health. (United States)

    Snowden, Lonnie R


    African Americans' poverty and deep-poverty rates are higher than those of Whites, and African Americans' poverty spells last longer. Furthermore, nonpoor African Americans are especially likely to slip into poverty, and over the course of a lifetime, very many African Americans will experience poverty. Accordingly, African Americans are disproportionately likely to be assisted by safety net programs providing income support and health and social assistance. When mental health-related outcomes are assessed, U.S.-focused and international studies of safety net programs sometimes find that adults and children show a decline in symptoms of mental illness after participating. All things being equal, these improvements can disproportionately benefit African Americans' mental health. Safety net programs' mental health-related impact should be routinely assessed when evaluating the programs' economic and social outcomes and the impact they have on African Americans' mental health. Policy research of this kind can help us to understand whether these very large interventions show society-wide mental health-related improvement in the disproportionately large number of African Americans who participate in them.

  17. Palliative care physicians′ religious / world view and attitude towards euthanasia: A quantitative study among flemish palliative care physicians

    Directory of Open Access Journals (Sweden)

    B Broeckaert


    Full Text Available Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147 working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation,religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. Results: We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. Conclusions: In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia.

  18. 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)


    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

  19. Application of adenosine 5'-triphosphate (ATP infusions in palliative home care: design of a randomized clinical trial

    Directory of Open Access Journals (Sweden)

    van den Borne Ben E


    Full Text Available Abstract Background Palliative care in cancer aims at alleviating the suffering of patients. A previous study in patients with advanced non-small-cell lung cancer showed that adenosine 5'-triphosphate (ATP infusions had a favourable effect on fatigue, appetite, body weight, muscle strength, functional status and quality of life. The present study was designed 1. To evaluate whether ATP has favourable effects in terminally ill cancer patients, 2. To evaluate whether ATP infusions may reduce family caregiver burden and reduce the use of professional health care services, and 3. To test the feasibility of application of ATP infusions in a home care setting. Methods/Design The study can be characterized as an open-labelled randomized controlled trial with two parallel groups. The intervention group received usual palliative care, two visits by an experienced dietician for advice, and regular ATP infusions over a period of 8 weeks. The control group received palliative care as usual and dietetic advice, but no ATP. This paper gives a description of the study design, selection of patients, interventions and outcome measures. Discussion From April 2002 through October 2006, a total of 100 patients have been randomized. Follow-up of patients will be completed in December 2006. At the time of writing, five patients are still in follow up. Of the 95 patients who have completed the study, 69 (73% have completed four weeks of follow-up, and 53 (56% have completed the full eight-week study period. The first results are expected in 2007.

  20. Reading the African context

    Directory of Open Access Journals (Sweden)

    Musonda Bwalya


    Full Text Available There is so much alienation, pain and suffering in our today�s world. In this vein, African Christianity, a voice amongst many voices, should seek to be a transformational religion for the whole of life, affecting all facets of human life towards a fuller life of all in Africa. This article sought to highlight and point to some of the major societal challenges in the African context which African Christianity, as a life-affirming religion, should continue to embrace, re-embrace and engage with, if it has to be relevant to the African context. In this vein, the article argued that a correct reading of the African context would lead to a more relevant theory and praxis of African Christianity for the benefit of all African peoples and their global neighbours. The contention of this article was that African Christianity has a significant role to play in the re-shaping of the African society and in the global community of humans, only that this role must be executed inclusively, responsibly and appropriately, together with all those who seek the holistic development of Africa towards one common destiny.

  1. Perioperative management of infants undergoing fundoplication and gastrostomy after stage I palliation of hypoplastic left heart syndrome. (United States)

    Watkins, Scott; Morrow, Stephen E; McNew, Brent S; Donahue, Brian S


    Infants with hypoplastic left heart syndrome (HLHS) represent a high-risk population when they present for noncardiac surgery. To assist clinicians in the care of these infants, we present our experience of 36 HLHS patients who underwent abdominal surgery after stage I palliation. We reviewed patients with HLHS who underwent gastrostomy and/or fundoplication after stage I palliation during an 18-month period. We assessed the impact of preoperative echocardiographic predictors and regional anesthesia on use of intraoperative inotropes, extubation in the OR, perioperative instability, postoperative escalation of care, and length of hospital and intensive care unit stay. Of 39 abdominal operations, all but 2 were performed with open laparotomy. There was a positive association between regional anesthesia and instability during induction. Escalation of respiratory care occurred in 9 (23.1%) cases, and escalation of hemodynamic care occurred in 6 (15.4%) cases. Neoaortic valve insufficiency was associated with increased length of stay, and ventricular outflow obstruction was associated with escalation of hemodynamic care. Extubation in the OR was successful in 31 cases (79.5%). In-hospital death occurred in 1 patient (2.7%). HLHS infants often undergo abdominal surgery, but intraoperative instability and need for escalation of care is common. Specific echocardiographic findings were associated with length of stay and escalation of care. Regional anesthesia was associated with transient intraoperative instability but not with other adverse outcomes.

  2. Self-expandable metallic stents for palliation of patients with malignant gastric outlet obstruction caused by stomach cancer

    Institute of Scientific and Technical Information of China (English)

    Tae Oh Kim; Dae Hwan Kang; Gwang Ha Kim; Jeong Heo; Geun Am Song; Mong Cho; Dong Heon Kim; Mun Sup Sim


    AIM: To ascertain clinical outcome and complications of self-expandable metal stents for endoscopic palliation of patients with malignant obstruction of the gastrointestinal (GI) tract.METHODS: A retrospective review was performed throughout August 2000 to June 2005 of 53 patients with gastric outlet obstruction caused by stomach cancer. All patients had symptomatic obstruction including nausea, vomiting, and decreased oral intake. All received self-expandable metallic stents.RESULTS: Stent implantation was successful in all 53 (100%) patients. Relief of obstructive symptoms was achieved in 43 (81.1%) patients. No immediate stent-related complications were noted. Seventeen patients had recurrent obstruction (tumor ingrowth in 14 patients, tumor overgrowth in 1 patient, and partial distal stent migration in 2 patients). The mean survival was 145 d. Median stent patency time was 187 d.CONCLUSION: Endoscopic placement of self-expandable metallic stents is a safe and effective treatment for the palliation of patients with inoperable malignant gastric outlet obstruction caused by stomach cancer.

  3. African Americans,hypertension and the renin angiotensin system

    Institute of Scientific and Technical Information of China (English)

    Sandra; F; Williams; Susanne; B; Nicholas; Nosratola; D; Vaziri; Keith; C; Norris


    African Americans have exceptionally high rates of hypertension and hypertension related complications. It is commonly reported that the blood pressure lowering efficacy of renin angiotensin system(RAS) inhibitors is attenuated in African Americans due to a greater likelihood of having a low renin profile. Therefore these agents are often not recommended as initial therapy in African Americans with hypertension. However, the high prevalence of comorbid conditions, such as diabetes, cardiovascular and chronic kidney disease makes treatment with RAS inhibitors more compelling. Despite lower circulating renin levels and a less significant fall in blood pressure in response to RAS inhibitors in African Americans, numerous clinical trials support the efficacy of RAS inhibitors to improve clinical outcomes in this population, especially in those with hypertension and risk factors for cardiovascular and related diseases. Here, we discuss the rationale of RAS blockade as part of a comprehensive approach to attenuate the high rates of premature morbidity and mortality associated with hypertension among African Americans.

  4. Evaluation of hospital palliative care teams: strengths and weaknesses of the before-after study design and strategies to improve it. (United States)

    Simon, S; Higginson, I J


    Hospital palliative care teams (HPCTs) are well established as multi-professional services to provide palliative care in an acute hospital setting and are increasing in number. However, there is still limited evaluation of them, in terms of efficacy and effectiveness. The gold standard method of evaluation is a randomised control trial, but because of methodological (e.g., randomisation), ethical and practical difficulties such trials are often not possible. HPCT is a complex intervention, and the specific situation in palliative care makes it challenging to evaluate (e.g., distress and cognitive impairment of patients). The quasi-experimental before-after study design has the advantage of enabling an experimental character without randomisation. But this has other weaknesses and is prone to bias, for example, temporal trends and selection bias. As for every study design, avoidance and minimisation of bias is important to improve validity. Therefore, strategies of selecting an appropriate control group or time series and applying valid outcomes and measurement tools help reducing bias and strengthen the methods. Special attention is needed to plan and define the design and applied method.

  5. Palliative care personnel and services: a national survey in Thailand 2012. (United States)

    Phungrassami, Temsak; Thongkhamcharoen, Rojanasak; Atthakul, Narumol


    Research on palliative care services in Thailand is incomplete. We conducted a countrywide cross-sectional postal survey to update the situation. We approached hospitals and asked them to respond to a questionnaire. The overall response rate of government hospitals was 61 percent (537 of 882 hospitals). Of these, 59 percent reported that they had personnel trained in palliative care; the majority had received less than a week of such training. In all, 60 percent of the hospitals reported that they offered palliative care services, but 25 percent of these services were delivered by staff who had no palliative care training. The criteria of having at least one trained doctor and nurse on staff was met by 17 percent of the hospitals. Only seven hospitals, most of them associated with medical schools, employed both a doctor and a nurse who had been trained in palliative care for one month or more; these professionals mainly provided hospital and home palliative care team services. Our survey reveals the lack of both health care personnel fully trained in palliative care and specialist palliative care services in Thailand.

  6. Transmural palliative care by means of teleconsultation: a window of opportunities and new restrictions

    NARCIS (Netherlands)

    Gurp, J.L. van; Selm, M. van; Leeuwen, E. van; Hasselaar, J.G.


    BACKGROUND: Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural pal

  7. Transmural palliative care by means of teleconsultation: a window of opportunities and new restrictions

    NARCIS (Netherlands)

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


    Background: Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural pal

  8. Perception of Palliative Care among Medical Students in a Teaching Hospital

    Directory of Open Access Journals (Sweden)

    Samiksha Pandey


    Conclusions: The perception of palliative care medicine is low in first couple of year of medical study. It is increased in clinically exposed students but is surprisingly more in fourth year than final year undergraduate medical students. However, it should be included in undergraduate medical study. Keywords: medical students; palliative care; perception.

  9. Changes in symptoms and pain intensity of cancer patients after enrollment in palliative care at home

    NARCIS (Netherlands)

    Dumitrescu, Luminita; van den Heuvel-Olaroiu, Marinela; van den Heuvel, Wim J. A.


    This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical chara

  10. Integrating Speech-Language Pathology Services in Palliative End-of-Life Care (United States)

    Pollens, Robin D.


    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…

  11. The perspectives on including palliative care in the Indian undergraduate physiotherapy curriculum. (United States)

    Veqar, Zubia


    According to the guidelines which were published by WHO in 2008, palliative care has been defined as "An approach that improves the quality of life of the patients and their families who face the problems which are associated with life-threatening illnesses, through the prevention and relief of suffering by means of an early identification, an impeccable assessment and the treatment of pain and other problems, physical, psychosocial and spiritual". The intervention which is provided as a part of the palliative care has to be provided by health professionals who strictly work as a part of multidisciplinary team and have been specifically trained to an optimal level of competency in the field. The impairment of the physical function and pain are two key problem areas in palliative care, which a physiotherapist deals with. Is a physiotherapist who is trained in India, trained to work as an efficient member of the team in this field? THIS ARTICLE DEALS WITH THE FOLLOWING: What is palliative care and what is its importance?A multidisciplinary approach to palliative careThe scenario of palliative care in IndiaThe role of physiotherapy in palliative care.The current scenario of physiotherapy education vis a vis palliative care.

  12. Clinical oncology and palliative medicine as a combined specialty--a unique model in Hong Kong. (United States)

    Yeung, Rebecca; Wong, Kam-Hung; Yuen, Kwok-Keung; Wong, Ka-Yan; Yau, Yvonne; Lo, Sing-Hung; Liu, Rico


    The importance of early integration of palliative care (PC) into oncology treatment is increasingly being recognized. However, there is no consensus on what is the optimal way of integration. This article describes a unique model in Hong Kong where clinical oncology and palliative medicine (PM) is integrated through the development of PM as a subspecialty under clinical oncology.

  13. Integration of early specialist palliative care in cancer care: Survey of oncologists, oncology nurses, and patients

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    Naveen Salins


    Conclusion: Oncologists, oncology nurses, and patients felt that integration of early specialist palliative care in cancer improves symptom control, end-of-life care, health-related communication, and continuity of care. The perceptions of benefit of the palliative care intervention in the components surveyed, differed among the three groups.

  14. Review of palliative sedation and its distinction from euthanasia and lethal injection. (United States)

    Hahn, Michael P


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

  15. How do GPs recognize needs for palliative care in their patients?

    NARCIS (Netherlands)

    Claessen, S.J.; Francke, A.L.; Deliens, L.


    Aim: The aim of this study was to explore how GPs in the Netherlands recognize patients’ needs for palliative care. Methods: We conducted qualitative semi-structured interviews with about 25 GPs. These GPs were interviewed about recognition of the needs for palliative care in their patients and how

  16. Living in the face of death: Studies on palliative care in upper GI cancer patients

    NARCIS (Netherlands)

    M.J. Uitdehaag (Madeleen)


    textabstractThis thesis explores palliative care provided to patients with advanced upper gastrointestinal (GI) cancer. The 5-year survival rates for these cancer sites range between 4 and 17%, which implies that many of these patients require palliative care. Considering the fact that there is no u

  17. Palliative Care Education: Focusing on Care and Not Just Disease | Division of Cancer Prevention (United States)

    At the Institute for Palliative Medicine (IPM) in San Diego, medical residents are re-tooling for one of the most essential aspects of medicine: caring for seriously ill patients. “The goal is to teach them the core competencies in palliative care,” explained Dr. Charles von Gunten, the institute’s provost. |

  18. Sexuality and Life-Threatening Illness: Implications for Social Work and Palliative Care (United States)

    Cagle, John G.; Bolte, Sage


    Social workers in hospice and palliative care settings have been charged with the responsibility of addressing sexuality with their patients and families. However, little direction has been offered as to how to approach this difficult subject within the context of palliative care. This article provides a critical analysis of the previous…

  19. Providing palliative care for the newly diagnosed cancer patient: concepts and resources. (United States)

    Gabriel, Michelle


    Palliative care has evolved from end-of-life care following exhaustion of curative therapy to care across the cancer-management continuum. Often initiated concurrently with curative care at the time of diagnosis, palliative care ensures both effective symptom management and the best possible quality of life in four key domains-physical, psychological, social, and spiritual. The significant growth and development of palliative care in the United States is evident in that one in four hospitals now has a palliative care program, palliative medicine is now recognized as an official medical subspecialty by the American Board of Medical Specialties, and national programs offer comprehensive continuing education in palliative care for nurses and physicians. The oncology nurse who provides palliative care does so as part of a multidisciplinary team that includes not only physicians but also can involve chaplains, massage therapists, pharmacists, nutritionists, and other specialists. This article provides resources and reviews and highlights pertinent palliative care issues to guide oncology nurses managing newly diagnosed cancer patients.

  20. Inappropriateness of using opioids for end-stage palliative sedation: a Dutch study.

    NARCIS (Netherlands)

    Reuzel, R.P.B.; Hasselaar, J.G.J.; Vissers, K.C.P.; Wilt, G.J. van der; Groenewoud, J.M.M.; Crul, B.J.P.


    To be able to distinguish end-stage palliative sedation from euthanasia without having to refer to intentions that are difficult to verify, physicians must be able to manage palliative sedation appropriately (i.e., see that death is not hastened as a result of disproportionate medication). In the pr

  1. Patient autonomy problems in palliative care: systematic development and evaluation of a questionnaire.

    NARCIS (Netherlands)

    Vernooy-Dassen, M.J.F.J.; Osse, B.H.P.; Schade, E.; Grol, R.P.T.M.


    No instrument to assess autonomy problems in palliative care is currently available. The purpose of this study was to develop a comprehensive and concise questionnaire to measure autonomy problems in palliative cancer patients and to study its validity and reliability. We systematically developed a

  2. The view of pulmonologists on palliative care for patients with COPD: a survey study

    Directory of Open Access Journals (Sweden)

    Duenk RG


    Full Text Available RG Duenk,1 C Verhagen,1 PNR Dekhuijzen,2 KCP Vissers,1 Y Engels,1,* Y Heijdra2,* 1Department of Anesthesiology, Pain and Palliative Medicine, 2Department of Lung Diseases, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands *These authors contributed equally to this work Introduction: Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective: Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods: A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results: The 256 respondents (31.8% covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2% indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%, communication between pulmonologist and general practitioner (77%, and identification of the palliative phase (75.8%, while the latter was considered the most important aspect for improvement (67.6%. Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%, while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT. In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%. Conclusion: To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification

  3. Palliative care in advanced dementia; A mixed methods approach for the development of a complex intervention

    Directory of Open Access Journals (Sweden)

    Tookman Adrian


    Full Text Available Abstract Background There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will die within 6 months. These patients have complex needs but often lack capacity to express their wishes. Often carers are expected to make decisions. Advance care planning discussions are rarely performed, despite potential benefits such more consistent supportive healthcare, a reduction in emergency admissions to the acute hospital and better resolution of carer bereavement. Design/Methods We have used the MRC complex interventions framework, a "bottom-up" methodology, to develop an intervention for patients with advanced dementia and their carers aiming to 1 define end of life care needs for both patients and carers, 2 pilot a palliative care intervention and 3 produce a framework for advance care planning for patients. The results of qualitative phase 1 work, which involved interviews with carers, hospital and primary care staff from a range of disciplines, have been used to identify key barriers and challenges. For the exploratory trial, 40 patients will be recruited to each of the control and intervention groups. The intervention will be delivered by a nurse specialist. We shall investigate and develop methodology for a phase 3 randomised controlled trial. For example we shall explore the feasibility of randomisation, how best to optimise recruitment, decide on appropriate outcomes and obtain data for power calculations. We will evaluate whether the intervention is pragmatic, feasible and deliverable on acute hospital wards and test model fidelity and its acceptability to carers, patients and staff. Discussion Results of qualitative phase 1 work

  4. The National Palliative Care Research Center and the Center to Advance Palliative Care: a partnership to improve care for persons with serious illness and their families. (United States)

    Morrison, R Sean; Meier, Diane E


    The elimination of suffering and the cure of disease are the fundamental goals of medicine. While medical advances have transformed previously fatal conditions such as cancer and heart disease into illnesses that people can live with for many years, they have not been accompanied by corresponding improvements in the quality of life for these patients and their families. Living with a serious illness should not mean living in pain or experiencing symptoms like shortness of breath, nausea, or fatigue. Yet, multiple studies over the past decade suggest that medical care for patients with advanced illness is characterized by inadequately treated physical distress; fragmented care systems; poor communication between doctors, patients, and families; and enormous strains on family caregiver and support systems. Palliative care is interdisciplinary care focused on relief of pain and other symptoms and support for best possible quality of life for patients with serious illness, and their families. It is appropriate at the point of diagnosis of a serious illness. It goes beyond hospice care to offer patients and their families treatments focused on improving quality of life while they are receiving life-prolonging and curative treatments. Palliative care programs have been shown to reduce symptoms, improve doctor-patient-family communication and satisfaction with care, as well as enhance the efficiency and effectiveness of hospital services. In the last 5 years alone the number of palliative care programs has more than doubled. This growth is in response to the increasing numbers and needs of Americans living with serious, complex and chronic illnesses, and the realities of the care responsibilities faced by their families. In order to ensure that all persons with serious illness and their families receive the quality of care they deserve, palliative care must become an integral part of the U.S. healthcare landscape. Specifically, persons facing serious illness and their

  5. Virtual reality for the palliative care of cancer. (United States)

    Oyama, H


    We have been developing a VR system to provide patients with emotional support and to encourage them to assume an active life against cancer, since patients with an active lifestyle survive longer than those with a passive lifestyle. A possible explanation for this latter fact is that psychological stimulation may also activate the endocrine system and the immune system. Both systems may be able to rapidly repair tissue damaged by cancer and change the characteristics of the cancer itself. Although microelectrical analysis and molecular and genetic analyses are rapidly solving the riddles of the relationship between the brain and thought, we think that our VR research for palliative medicine may also play an important role in this area with regard to the development of new tools for treatment and support. This notion is based on the hypothesis that the brain can reorganize itself to compensate for irrationality or inappropriateness through pharmacological adaptation and/or anatomical regeneration of synapses. Another reason why VR research in palliative medicine is useful is that VR techniques represent not only an enhanced human-machine interface, but also an enhanced human communication technology. VR technology may also be used to help patients accept their disease. The mental state of a patient in the terminal stage of cancer changes step by step from denial of cancer, hope for a new treatment for cancer, suspicion of medical treatment, uneasiness regarding their future life, irritation, depression, and acceptance or despair. We plan to develop a new type of counseling system in medical cyberspace to provide mental care. It can also be used for group therapy or humor therapy to reduce loneliness. In summary, we conclude that VR technology can be applied to palliative medicine (1) to support communication between the patient and others, (2) to provide psychological support to treat neurosis and help to stabilize the patient's mental state, and (3) to actually

  6. [Importance of Anesthesiologists in the Work of a Palliative Care Team]. (United States)

    Hozumi, Jun; Sumitani, Masahiko


    World Health Organization has proposed that palliative medicine should be applied early in the course of the malignant diseases. Regrettably, however, palliative care has been usually provided to patients with the advanced stage of cancer, as terminal care. Recently, palliative medicine begins at the time when patients are diagnosed with cancer. In response to changes in clinical settings of palliative medicine, anesthesiologists, with substantial experience in interdisciplinary pain management, can utilize their advantages in providing palliative medicine to cancer patients: 1) use of opioid analgesics; 2) considering the biopsychosocial model of pain; 3) helping patients live as actively as possible until death; and 4) helping the family cope with the patient's illness and their own bereavement.

  7. Palliative cancer care ethics: Principles and challenges in the Indian setting

    Directory of Open Access Journals (Sweden)

    Tejaswi Mudigonda


    Full Text Available Palliative cancer treatment is a system of care that seeks to relieve suffering in patients with progressive cancer. Given the intractable symptoms with which certain malignancies manifest, palliative care offers a practical approach towards improving the patient′s quality of life. However, there are an array of ethical issues associated with this treatment strategy such as particular methods of pain relief, a reliable assessment of suffering, autonomy, and multi-specialist care. While these principles are important to increase and improve the network of palliative care, the resource-poor Indian environments present numerous barriers for these principles to be practically applied. As the infrastructure of comprehensive cancer centers develop, paralleled with an increase in training of palliative care professionals, significant improvements need to be made in order to elevate the status of palliative cancer care in India.

  8. Organization and evaluation of generalist palliative care in a Danish hospital

    DEFF Research Database (Denmark)

    Bergenholtz, H; Hølge-Hazelton, B; Jarlbæk, Lene


    Background Hospitals have a responsibility to ensure that palliative care is provided to all patients with life-threatening illnesses. Generalist palliative care should therefore be acknowledged and organized as a part of the clinical tasks. However, little is known about the organization...... and evaluation of generalist palliative care in hospitals. Therefore the aim of the study was to investigate the organization and evaluation of generalist palliative care in a large regional hospital by comparing results from existing evaluations. Methods Results from three different data sets, all aiming...... to evaluate generalist palliative care, were compared retrospectively. The data-sets derived from; 1. a national accreditation of the hospital, 2. a national survey and 3. an internal self-evaluation performed in the hospital. The data were triangulated to investigate the organization and evaluation...

  9. Optimization of dose and fractionation of endobronchial brachytherapy with or without external radiation in the palliative management of non-small cell lung cancer: A prospective randomized study

    Directory of Open Access Journals (Sweden)

    Mallick I


    Full Text Available Aims: Endobronchial brachytherapy (EBBT is an established modality for the palliation in advanced non-small cell lung cancer. We compared three different schedules using EBBT with or without external radiation (XRT in this setting. Materials and Methods: Forty-five patients were randomized to three treatment arms. Arm A received XRT to a dose of 30 Gy/ 10 fr/ 2 weeks and two sessions of EBBT 8 Gy each. Arm B received the same XRT and a single session of EBBT 10 Gy at 1 cm. Arm C received only a single fraction of brachytherapy to a dose of 15 Gy at 1 cm without XRT. Symptomatic response rates, duration of symptom palliation, obstruction scores, quality of life outcomes and complications were assessed and compared. Results: The overall symptomatic response rates were 91% for dyspnea, 84% for cough, 94% for hemoptysis and 83% for obstructive pneumonia. There was no significant difference between the arms. The median time to symptom relapse was 4-8 months for all symptoms and the median time to symptom progression was 6-11 months. The results were comparable between groups except for hemoptysis, where a shorter palliation was seen in Arm C that achieved statistical significance ( P < 0.01. Quality of life showed significant improvement, with maximum benefit in Arm A. Complication rates were low. Only one patient died of fatal hemoptysis. Conclusion: EBBT is thus a safe and effective palliative tool in advanced non-small cell lung cancer, either alone or in conjunction with XRT. The difference between the treatment arms were not statistically significant in most categories, but patients treated with XRT and two endobronchial sessions of 8 Gy had the most consistent benefit in terms of all the parameters studied.

  10. Quality of Life After Palliative Radiation Therapy for Patients With Painful Bone Metastases: Results of an International Study Validating the EORTC QLQ-BM22

    Energy Technology Data Exchange (ETDEWEB)

    Zeng Liang [Department of Radiation Oncology, Odette Cancer Centre, University of Toronto, Toronto, Ontario (Canada); Chow, Edward, E-mail: [Department of Radiation Oncology, Odette Cancer Centre, University of Toronto, Toronto, Ontario (Canada); Bedard, Gillian; Zhang, Liying [Department of Radiation Oncology, Odette Cancer Centre, University of Toronto, Toronto, Ontario (Canada); Fairchild, Alysa [Department of Radiation Oncology, Cross Cancer Institute, Edmonton, Alberta (Canada); Vassiliou, Vassilios [Department of Radiation Oncology, Bank of Cyprus Oncology Centre, Nicosia (Cyprus); Alm El-Din, Mohamed A. [Department of Clinical Oncology, Tanta University Hospital, Tanta Faculty of Medicine, Tanta (Egypt); Jesus-Garcia, Reynaldo [Department of Orthopedic Oncology, Federal University of Sao Paulo, Sao Paulo (Brazil); Kumar, Aswin [Division of Gynaecology and Genitourinary Oncology, Department of Radiation Oncology, Regional Cancer Center, Trivandrum (India); Forges, Fabien [Inserm CIE3, Saint Etienne University Hospital, Saint-Etienne (France); Unit of Clinical Research, Innovation, and Pharmacology, Saint Etienne University Hospital, Saint-Etienne (France); Tseng, Ling-Ming [Department of Surgery, Taipei Veterans General Hospital, National Yang-Ming University, Taipei, Taiwan (China); Hou, Ming-Feng [Department of Gastroenterologic Surgery, Kaohsiung Medical University Hospital, Kaohsiung, Taiwan (China); Chie, Wei-Chu [Department of Public Health and Institute of Epidemiology and Preventative Medicine, National Taiwan University, Taipei, Taiwan (China); Bottomley, Andrew [European Organisation for Research and Treatment of Cancer, EORTC Headquarters, Brussels (Belgium)


    Purpose: Radiation therapy (RT) is an effective method of palliating painful bone metastases and can improve function and reduce analgesic requirements. In advanced cancer patients, quality of life (QOL) is the primary outcome of interest over traditional endpoints such as survival. The purpose of our study was to compare bone metastasis-specific QOL scores among patients who responded differently to palliative RT. Methods and Materials: Patients receiving RT for bone metastases across 6 countries were prospectively enrolled from March 2010-January 2011 in a trial validating the QLQ-BM22 and completed the QLQ-BM22 and the core measure (QLQ-C30) at baseline and after 1 month. Pain scores and analgesic intake were recorded, and response to RT was determined according to the latest published guidelines. The Kruskal-Wallis nonparametric and Wilcoxon rank sum tests compared changes in QOL among response groups. A Bonferroni-adjusted P<.003 indicated statistical significance. Results: Of 79 patients who received palliative RT, 59 were assessable. Partial response, pain progression, and indeterminate response were observed in 22, 8, and 29 patients, respectively; there were no patients with a complete response. Patients across all groups had similar baseline QOL scores apart from physical functioning (patients who progressed had better initial functioning). One month after RT, patients who responded had significant improvements in 3 of 4 QLQ-BM22 domains (painful site, P<.0001; painful characteristic, P<.0001; and functional interference, P<.0001) and 3 QLQ-C30 domains (physical functioning, P=.0006; role functioning, P=.0026; and pain, P<.0001). Patients with progression in pain had significantly worse functional interference (P=.0007) and pain (P=.0019). Conclusions: Patients who report pain relief after palliative RT also have better QOL with respect to bone metastasis-specific issues. The QLQ-BM22 and QLQ-C30 are able to discriminate among patients with varying

  11. Holism and a health-promoting approach to palliative care. (United States)

    Buckley, Jenny


    This article draws on Illich's definition of health and explores the perspective of facing death as a process of adaptation. Research into psychoneuroimmunology is discussed. This focuses on using one's own resources, which the author sees as a central tenet of holism. A key aspect of this approach is not only empowerment of patients, but also of nurses, allowing them to be self-aware, self-valuing and to practise self-care. The article mentions an educational strategy to encourage a health-promoting approach. This course uses the concept of holism as a framework for teaching and practice of palliative care.

  12. Pain and Symptom Management in Pediatric Palliative Care. (United States)

    Komatz, Kelly; Carter, Brian


    Pain and symptom management is considered one of the cornerstones of palliative and hospice medicine. However, general clinicians and specialists are not usually comfortable addressing the most common forms of pain seen in the pediatric population. In addition, non-pain symptom management, especially when related to underlying chronic medical conditions, can be managed by the general clinician and specialists. The goal of this article is to educate clinicians about pain categories, taking a detailed pain history, and developing a plan for treatment, including nonpharmacologic methods. Finally, we discuss common symptoms in patients with chronic medical conditions, including first-line treatment options.

  13. Primary peritoneal serous carcinoma: A rare case and palliative approach

    Directory of Open Access Journals (Sweden)

    Viral M Bhanvadia


    Full Text Available Primary peritoneal serous carcinoma (PPSC is a rare primary malignancy that diffusely involves the peritoneum, indistinguishable clinically and histopathologically from primary serous ovarian carcinoma. The origin of PPSC has not been well characterized. Here we present a case of PPSC diagnosed in ultrasonography-guided fine needle aspiration cytology (FNAC in a 76- old female presenting with ascites, abdominal pain, distension and constipation. PPSC is an unusual tumour but cytomorphology is distinctive enough to diagnose preoperatively. In the case report hereby described PPSC is an inoperable malignancy, hence chemotherapy and palliative care are the only offered treatment.

  14. Comfort, hygiene, and safety in veterinary palliative care and hospice. (United States)

    Downing, Robin; Adams, Valarie Hajek; McClenaghan, Ann P


    Hygiene, comfort, and safety during pet palliative care and hospice are usually straightforward. The veterinary health care team must coordinate care to ensure that the pet and the family are fully informed and engaged in the process. End-of-life issues, euthanasia, and death are typically not everyday concerns for the pet owner. Pet owners and veterinary patients rely on the veterinary health care team to help create the structure within which the pet will die. The veterinary team can give the family-pet unit the gift of structure and multifaceted comfort. The veterinary profession must take seriously this unique niche of care.

  15. Palliative treatment of skin metastases in dermato-oncology. (United States)

    Kähler, Katharina C; Egberts, Friederike; Gutzmer, Ralf


    Patients with metastatic melanoma, but also other solid tumors (e.g., lung or breast cancer), may develop cutaneous metastases in advanced stages. The goal of treatment is to alleviate symptoms such as pain, fetor, secretions, or bleeding. Current treatment modalities are based on a multimodal treatment approach. Beside surgery, treatment options such as electrochemotherapy, isolated limb perfusion, radiotherapy, and local administration of cytokines or chemotherapy agents are available. In case of concomitant visceral metastases, this local treatment approach may not affect overall survival, but the palliation of these tumor-associated symptoms very often improves the quality of life for the patient.

  16. Emotion management in children′s palliative care nursing

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    Eryl Zac Maunder


    Full Text Available This article explores the emotional labor involved for nurses providing palliative care for children/young people living with life-limiting illnesses/conditions, and their families. It highlights the challenges nurses face in managing their emotion when caring for children/young people and their families, and explores strategies to enable nurses to cope with this aspect of their role without compromising their personal wellbeing. It suggests that emotional labor within nursing goes largely unrecorded, and remains undervalued by managers and health care services.

  17. Companion animals in palliative care: a hidden quality option? (United States)

    Tanneberger, S; Köhler, U


    In the light of the unprecedented demographic changes in many countries it is important to review and adapt existing strategies for giving old and incurable patients the adequate health care. Based on available data the importance of companion animals needs to be considered as part of individual care planning. Despite intensive research in other areas of health care, there is limited data concerning the use of companion animals in palliative care. The field demands much more recognition. For many people companion animals can be a chance for better quality of life.

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

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    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: [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)


    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


    Pace, A.; Villani, V.; Benincasa, D.; Di Pasquale, A.; Carapella, C.M.; Pompili, A.


    BACKGROUND: Therapeutic (or palliative) sedation in the context of palliative medicine is the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable suffering in a manner that is ethically acceptable to the patient, family and health-care providers. There is a large debate about the use of palliative sedation, sometime defined as terminal sedation. There are very few data about the role of palliative sedation in brain tumor patients at the end of life. However, in brain tumor patients palliative sedation may be necessary in case of uncontrolled delirium, agitation, death rattle or refractory seizures. METHODS: We retrospectively analyzed the clinical records of patients assisted at home until death by the Regina Elena Cancer Institute Palliative Home Care for brain tumor patients. All patients died for brain tumor in the last 2 years (2012-2013) were included in this study. RESULTS: Out of 190 brain tumor patients assisted at home in 2012-2013, 108 died and were included in this study. All patients were affected by malignant glioma. Palliative sedation was utilized in 12 cases (11%). In 8 cases for the control of refractory seizures and in 4 cases for delirium. Given the lack of advanced directives and low competence of patients, the decision about sedation was discussed by the care team with caregivers and family members. Palliative sedation was started with midazolam 0.5-1 mg/hr and prolonged until symptoms' control. CONCLUSION: The use of palliative sedation is relatively frequent in the practice of a neuro-oncologic palliative team. The most frequent refractory symptoms in this population of patients were seizures and delirium. The process of end of life treatment decisions in neuro-oncology requires to be better defined.

  20. The experience of palliative patients and their families of a family meeting utilised as an instrument for spiritual and psychosocial care: A qualitative study

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    Olver Ian


    Full Text Available Abstract Background This study explores the experience of palliative patients and their family members of a family meeting model, utilised as an instrument for the provision of spiritual and psychosocial care. In doing so the study embraces a broad understanding of spirituality which may or may not include formal religious practice and a concept of psychosocial care that includes: social and emotional well-being, communication, self esteem, mental health and adaptation to illness. The meeting of spiritual and psychosocial needs is considered to be an important aspect of palliative care. Methods This qualitative study, philosophically underpinned by hermeneutic phenomenology, investigates the participatory experience of palliative care patients and their significant family members of such a family meeting. People registered with two large metropolitan palliative care services, who met selection criteria, were referred by medical staff. Twelve of the 66 referred took part in family meetings which also included significant others invited by the patient. A total of 36 family members participated. The number of participants of individual family meetings ranged from two to eleven. After the family meeting every participant was invited to take part in an individual in-depth interview about their experience of the meeting. Forty seven interviews were conducted. These were audio recorded and transcribed. Results Data analysis, utilising Ricoeur's theory of interpretation, revealed seven main themes: personal experience of the meeting, personal outcomes, observation of others' experience, observation of experience and outcomes for the family unit, meeting facilitation, how it could have been different and general applicability of the family meeting. Throughout these themes were numerous references to aspects of the web of relationships which describe the concept of spirituality as it is defined for the purpose of this study. Conclusions The findings

  1. Empowering African States

    Institute of Scientific and Technical Information of China (English)


    China helps bring lasting peace and stability to Africa African think tanks expressed a high opinion of China’s role in helping build African peace and security at the first meeting of the China-Africa Think Tanks Forum. The

  2. African Literature as Celebration. (United States)

    Achebe, Chinua


    Describes the Igbo tradition of "Mbari," a communal creative enterprise that celebrates the world and the life lived in it through art. Contrasts the cooperative, social dimension of pre-colonial African culture with the exclusion and denial of European colonialism, and sees new African literature again celebrating human presence and…

  3. African American Suicide (United States)

    African American Suicide Fact Sheet Based on 2012 Data (2014) Overview • In 2012, 2,357 African Americans completed suicide in the U.S. Of these, 1,908 (80. ... rate of 9.23 per 100,000). The suicide rate for females was 1.99 per 100, ...

  4. African Peacekeepers in Africa

    DEFF Research Database (Denmark)

    Emmanuel, Nikolas G.


    behind African participation in United Nations (UN) peacekeeping operations in Africa. In doing so, this research focuses on US military aid and foreign troop training from 2002 to 2012, and its impact on African deployments into UN peacekeeping missions in Africa. As can be expected, such third...

  5. African agricultural trade

    DEFF Research Database (Denmark)

    Jensen, Hans Grinsted; Sandrey, Ron


    This article starts with a profile of African agricultural trade. Using the pre-release version 9.2 of the GTAP database, we then show that the results for tariff elimination on intra-African trade are promising, but these tariff barriers are not as significant as the various trade-related barriers...

  6. Does land abundance explain African institutions?



    The land abundance view of African history uses sparse population to explain pre-colonial land tenure and slavery. I document the geographic forcing variables that predict land rights, slavery, and population density in a cross section of global societies. I discuss whether these correlations support theories of land rights and slavery, including the land abundance view. I show that pre-colonial institutions predict institutional outcomes in Africa in the present, including land transactions,...

  7. Parents' Voices Supporting Music Therapy within Pediatric Palliative Care

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    Kathryn Lindenfelser


    Full Text Available It has been my experience that parents are willing and open to express their voices to promote and advocate for music therapy services for their terminally ill children. By listening to parents' voices when providing care for terminally ill children, much can be done to ease the suffering of children and families at the end of life (Widger & Wilkins, 2004. My music therapy masters research at the University of Melbourne with Dr. Katrina McFerran will investigate bereaved parents' experiences of music therapy with their terminally ill child. This inquiry unfolded through my music therapy work with several children and families within hospice and palliative care. Parents have reflected that music therapy was a vital component in their child's care at the end of life. As one mom commented, "I don't care what anyone says, it has made a world of a difference." In order to further explore parents' experiences of music therapy, in-depth interviews will be conducted and transcripts will be analyzed using phenomenological strategies. It has been reported that parents find the interview process helpful in working through grief. They have also reported feeling an overall eagerness to share their child's story in order to provide input that might assist other families in the future (Widger & Wilkins, 2004. This article will describe pediatric palliative and hospice care, discuss parents as advocates for their terminally ill children, portray the use of music therapy within pediatrics, and share an example of music therapy with Jack.

  8. Changing the focus of care: from curative to palliative care

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    Silvia Soffritti


    Full Text Available The improvements in the obstetrical and neonatal diagnosis and therapies have resulted into an increase in the survival rate of infants previously considered as non-viable. Debate is focusing on professionals’ behaviour about withdrawal or withholding of life sustaining treatment (LST and administration of palliative care for newborns whose conditions are incompatible with a prolonged life. Decisions about treatment should be made jointly by the professionals’ team and the family, placing the interest of the baby at the very heart of the decision process. It is very important that the environment in which the family has to make the decision is characterized by openness, dialogue and frankness. A proper and effective communication with parents is always necessary and can resolve any conflict caused by disagreement. Furthermore, parents need time in the decision making process. Other supports, which could help the family in the final decision are the possibility to ask for a specialist’s second opinion and the involvement of religious leaders and of an indipendent clinical ethics committee. Withholding or withdrawal of LST does not mean cessation of care for the baby, it means to change the focus of care from curative to palliative care. Proceedings of the 10th International Workshop on Neonatology · Cagliari (Italy · October 22nd-25th, 2014 · The last ten years, the next ten years in Neonatology Guest Editors: Vassilios Fanos, Michele Mussap, Gavino Faa, Apostolos Papageorgiou 

  9. Pediatric palliative care and pediatric medical ethics: opportunities and challenges. (United States)

    Feudtner, Chris; Nathanson, Pamela G


    The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong communication skills of both sets of providers, as well as the potential for resource sharing and research collaboration. At the same time, the personal and professional relationships between PPC and PME present challenges, including potential conflict with colleagues, perceived or actual bias toward a palliative care perspective in resolving ethical problems, potential delay or underuse of PME services, and a potential undervaluing of the medical expertise required for PPC consultation. We recommend that these challenges be managed by: (1) clearly defining and communicating clinical roles of PPC and PME staff, (2) developing questions that may prompt PPC and PME teams to request consultation from the other service, (3) developing explicit recusal criteria for PPC providers who also provide PME consultation, (4) ensuring that PPC and PME services remain organizationally distinct, and (5) developing well-defined and broad scopes of practice. Overall, the rich relationship between PPC and PME offers substantial opportunities to better serve patients and families facing difficult decisions.

  10. Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions. (United States)

    Slomka, Jacquelyn; Prince-Paul, Maryjo; Webel, Allison; Daly, Barbara J


    People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care will require changing public perceptions and individuals' views in this high-risk population.

  11. Single nucleotide polymorphisms and inherited risk of chronic lymphocytic leukemia among African Americans (United States)

    Coombs, Catherine C.; Rassenti, Laura Z.; Falchi, Lorenzo; Slager, Susan L.; Strom, Sara S.; Ferrajoli, Alessandra; Weinberg, J. Brice; Kipps, Thomas J.


    The incidence of chronic lymphocytic leukemia (CLL) is significantly lower in African Americans than whites, but overall survival is inferior. The biologic basis for these observations remains unexplored. We hypothesized that germline genetic predispositions differ between African Americans and whites with CLL and yield inferior clinical outcomes among African Americans. We examined a discovery cohort of 42 African American CLL patients ascertained at Duke University and found that the risk allele frequency of most single nucleotide polymorphisms known to confer risk of development for CLL is significantly lower among African Americans than whites. We then confirmed our results in a distinct cohort of 68 African American patients ascertained by the CLL Research Consortium. These results provide the first evidence supporting differential genetic risk for CLL between African Americans compared with whites. A fuller understanding of differential genetic risk may improve prognostication and therapeutic decision making for all CLL patients. PMID:22745306

  12. Role of radiation therapy in palliative care of the patient with cancer. (United States)

    Lutz, Stephen T; Jones, Joshua; Chow, Edward


    Radiotherapy is a successful, time-efficient, well-tolerated, and cost-effective intervention that is crucial for the appropriate delivery of palliative oncology care. The distinction between curative and palliative goals is blurred in many patients with cancer, requiring that treatments be chosen on the basis of factors related to the patient (ie, poor performance status, advanced age, significant weight loss, severe comorbid disease), the cancer (ie, metastatic disease, aggressive histology), or the treatment (ie, poor response to systemic therapy, previous radiotherapy). Goals may include symptom relief at the site of primary tumor or from metastatic lesions. Attention to a patient's discomfort and transportation limitations requires hypofractionated courses, when feasible. Innovative approaches include rapid response palliative care clinics as well as the formation of palliative radiotherapy specialty services in academic centers. Guidelines are providing better definitions of appropriate palliative radiotherapy interventions, and bone metastases fractionation has become the first radiotherapy quality measure accepted by the National Quality Forum. Further advances in the palliative radiation oncology subspecialty will require integration of education and training between the radiotherapy and palliative care specialties.

  13. Inclusion of palliative care in Indian undergraduate physiotherapy curriculum-course guidelines and content

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    Zubia Veqar


    Full Text Available According to the guidelines published by the WHO in 2010, palliative care has been defined as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” Intervention provided as a part of the palliative care has to be by health professionals who strictly work as a part of the multidisciplinary team and have been specifically trained to an optimal level of competency in the field. Two key problem areas in palliative care which a physiotherapist deals with are poor physical function and pain. This article deals with the following issues: (1 What is palliative care education and its importance? (2 Current scenario of palliative care in medical and allied fields internationally. (3 Current scenario of palliative care education in medical and allied fields in India. (4 Proposed curriculum guidelines for palliative care in physiotherapy.

  14. Tough choices: dialysis, palliative care, or a third option for elderly ESRD. (United States)

    Williams, Mark E


    Dialysis should not be presumed to be the treatment of choice for all elderly chronic kidney disease stage 5 patients. Nondialysis active medical management, as an alternative to dialysis or palliative care, is a reasonable alternative in select cases. Early referral of CKD 5 elderly patients may lead to early initiation of dialysis, which may not be advantageous; it also provides an opportunity to institute active management as a treatment alternative. The informed decision to proceed with dialysis must involve both an assessment of evidence-based outcomes applicable to the patient, and allowance of patient preference. Prognostic tools are increasingly sought to aid in decision-making for elderly CKD 5 patients. Chronological age alone is not a sufficient predictor of benefit from dialysis treatments, according to observational studies and limited clinical trial data. The survival advantage of dialysis appears to be lost in patients with high levels of comorbidity. Establishing patient preference is an imperfect process, and many patients appear to regret their decision to undergo dialysis. With active medical management, efforts shift from prolonging life to emphasis on symptom control, dietary and medical treatment, and quality of life. Patient survival time can be remarkably long.

  15. What's the diagnosis? Organisational culture and palliative care delivery in residential aged care in New Zealand. (United States)

    Frey, Rosemary; Boyd, Michal; Foster, Sue; Robinson, Jackie; Gott, Merryn


    Organisational culture has been shown to impact on resident outcomes in residential aged care (RAC). This is particularly important given the growing number of residents with high palliative care needs. The study described herein (conducted from January 2013 to March 2014) examined survey results from a convenience sample of 46 managers, alongside interviews with a purposively selected sample of 23 bereaved family members in order to explore the perceptions of organisational culture within New Zealand RAC facilities in one large urban District Health Board. Results of the Organisational Culture Assessment Instrument (OCAI) completed by managers indicated a preference for a 'Clan' and the structured 'Hierarchy' culture. Bereaved family interviews emphasised both positive and negative aspects of communication, leadership and teamwork, and relationship with residents. Study results from both managers' OCAI survey scores and next of kin interviews indicate that while the RAC facilities are culturally oriented towards providing quality care for residents, they may face barriers to adopting organisational processes supportive of this goal.

  16. Uncertainty quantification in virtual surgery hemodynamics predictions for single ventricle palliation. (United States)

    Schiavazzi, D E; Arbia, G; Baker, C; Hlavacek, A M; Hsia, T Y; Marsden, A L; Vignon-Clementel, I E


    The adoption of simulation tools to predict surgical outcomes is increasingly leading to questions about the variability of these predictions in the presence of uncertainty associated with the input clinical data. In the present study, we propose a methodology for full propagation of uncertainty from clinical data to model results that, unlike deterministic simulation, enables estimation of the confidence associated with model predictions. We illustrate this problem in a virtual stage II single ventricle palliation surgery example. First, probability density functions (PDFs) of right pulmonary artery (PA) flow split ratio and average pulmonary pressure are determined from clinical measurements, complemented by literature data. Starting from a zero-dimensional semi-empirical approximation, Bayesian parameter estimation is used to find the distributions of boundary conditions that produce the expected PA flow split and average pressure PDFs as pre-operative model results. To reduce computational cost, this inverse problem is solved using a Kriging approximant. Second, uncertainties in the boundary conditions are propagated to simulation predictions. Sparse grid stochastic collocation is employed to statistically characterize model predictions of post-operative hemodynamics in models with and without PA stenosis. The results quantify the statistical variability in virtual surgery predictions, allowing for placement of confidence intervals on simulation outputs.

  17. African American Diaspora

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    Angela Brown


    Full Text Available The migration of blacks in North America through slavery became united.  The population of blacks past downs a tradition of artist through art to native born citizens. The art tradition involved telling stories to each generation in black families. The black culture elevated by tradition created hope to determine their personal freedom to escape from poverty of enslavement and to establish a way of life through tradition. A way of personal freedoms was through getting a good education that lead to a better foundation and a better way of life. With regard to all historic migrations (forced and voluntary, the African Union defined the African diaspora as "[consisting] of people of African origin living outside the continent, irrespective of their citizenship and nationality and who are willing to contribute to the development of the continent and the building of the African Union." Its constitutive act declares that it shall "invite and encourage the full participation of the African diaspora as an important part of our continent, in the building of the African Union." Keywords: literature concepts, African American abstracts

  18. Palliative care for the elderly - developing a curriculum for nursing and medical students

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    Bongartz Maren


    Full Text Available Abstract Background Delivering palliative care to elderly, dying patients is a present and future challenge. In Germany, this has been underlined by a 2009 legislation implementing palliative care as compulsory in the medical curriculum. While the number of elderly patients is increasing in many western countries multimorbidity, dementia and frailty complicate care. Teaching palliative care of the elderly to an interprofessional group of medical and nursing students can help to provide better care as acknowledged by the ministry of health and its expert panels. In this study we researched and created an interdisciplinary curriculum focussing on the palliative care needs of the elderly which will be presented in this paper. Methods In order to identify relevant learning goals and objectives for the curriculum, we proceeded in four subsequent stages. We searched international literature for existing undergraduate palliative care curricula focussing on the palliative care situation of elderly patients; we searched international literature for palliative care needs of the elderly. The searches were sensitive and limited in nature. Mesh terms were used where applicable. We then presented the results to a group of geriatrics and palliative care experts for critical appraisal. Finally, the findings were transformed into a curriculum, focussing on learning goals, using the literature found. Results The literature searches and expert feedback produced a primary body of results. The following deduction domains emerged: Geriatrics, Palliative Care, Communication & Patient Autonomy and Organisation & Social Networks. Based on these domains we developed our curriculum. Conclusions The curriculum was successfully implemented following the Kern approach for medical curricula. The process is documented in this paper. The information given may support curriculum developers in their search for learning goals and objectives.

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

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    Mylvaganam S


    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.

  20. Retrospective Study of Palliative Radiotherapy in Newly Diagnosed Head and Neck Carcinoma

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    Stevens, Christiaan M.; Huang Shaohui [Department of Radiation Oncology, Princess Margaret Hospital, University Health Network, and University of Toronto, Toronto, ON (Canada); Fung, Sharon [Department of Biostatistics, Princess Margaret Hospital, University Health Network, Toronto, ON (Canada); Bayley, Andrew J.; Cho, John B.; Cummings, Bernard J.; Dawson, Laura A.; Hope, Andrew J.; Kim, John J.; O' Sullivan, Brian; Waldron, John N. [Department of Radiation Oncology, Princess Margaret Hospital, University Health Network, and University of Toronto, Toronto, ON (Canada); Ringash, Jolie, E-mail: [Department of Radiation Oncology, Princess Margaret Hospital, University Health Network, and University of Toronto, Toronto, ON (Canada)


    Purpose: To examine the patterns of care, outcomes, and prognostic factors for patients with head-and-neck cancer (HNC) treated with palliative radiotherapy (RT). Methods and Materials: An institutional HNC anthology and electronic patient records were used to identify patients with previously untreated HNC of mucosal or salivary gland origin who underwent palliative RT at our institution between July 2003 and June 2008. Overall survival was determined from the start date of RT to either the date of death or the date of last follow-up for living patients. The data were censored if the subject was either lost to follow-up or had not been seen for follow-up at our institution for {>=}4 months. Results: We identified 148 eligible patients. The median age was 72 years (range, 19-94). Of the 148 patients, 12 had Stage II-III, 39 Stage IVA, 36 Stage IVB, and 54 Stage IVC; for 7 patients, the stage was unknown. Oropharyngeal primary cancer (40) was the most common primary site. The Eastern Cooperative Oncology Group performance status was 0 in 15, 1 in 69, 2 in 40, 3 in 19, and 4 in 5 patients. The Adult Co-morbidity Evaluation-27 scale was 0 in 33, 1 in 47, 2 in 44, and 3 in 21. The median radiation dose was 50 Gy (range, 2-70), the median fraction number was 20 (range, 1-40), and the median total treatment time (including breaks) was 29 days (range, 1-80). At analysis, 108 patients (73%) had died, 20 (13.5%) were alive, and 20 (13.5%) had been censored. The median follow-up was 4.8 months, and the median survival time was 5.2 months. Information on the treatment response was available for 103 patients (70%). On multivariate analysis, the radiation dose was an independent predictor of both overall survival (hazard ratio 0.97, 95% confidence interval 0.96-0.99, p <.01) and treatment response (odds ratio 1.05, 95% confidence interval 1.01-1.08, p <.01). Conclusion: For patients considered unsuitable for curative RT, the radiation dose might be an independent predictive