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Sample records for palliative care services

  1. Palliative Care

    MedlinePlus

    ... 5 Things to Know About Zika & Pregnancy Palliative Care KidsHealth > For Parents > Palliative Care Print A A ... decisions about their child's care. Who Needs Palliative Care? Any child who has a serious, complex, or ...

  2. A global update on the development of palliative care services.

    PubMed

    Morris, Claire

    2011-10-01

    On World Hospice and Palliative Care Day-8 October 2011-the Worldwide Palliative Care Alliance (WPCA) launched a global update highlighting the progress that has been made in hospice and palliative care over the past 5 years (Lynch et al, 2011; WPCA 2011). Encouragingly, the study shows that there has been a marked increase in the number of countries providing one or more hospice and palliative care services-from 49% of countries in 2006 to 58% in 2011. Here we explore some of the key factors behind this progress, focusing particularly on advocacy and policy.

  3. [eLearning service for home palliative care].

    PubMed

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

    2008-12-01

    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. PMID:20443298

  4. [Development of a specialised paediatric palliative home care service].

    PubMed

    Kuhlen, M; Balzer, S; Richter, U; Fritsche-Kansy, M; Friedland, C; Borkhardt, A; Janssen, G

    2009-01-01

    In Germany annually 1,500-3,000 children die from life-limiting diseases. Symptoms and course of disease differ considerably depending on the character of the underlying disease. Due to the desire of the children and their families to spend the end of life at home a paediatric palliative home care service was founded at the university children's hospital of Duesseldorf. In the last 20 years a specialised paediatric palliative team evolved from an unstructured voluntary activity. Prospective aims are an area-wide professional supply of all paediatric palliative patients and the improvement of the cooperation with the resident paediatrician and paediatric palliative nursing services. Furthermore the establishment of networks as well as a proper communication among the professionals is inalienable.

  5. Underutilization of palliative care services in the liver transplant population

    PubMed Central

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

    2016-01-01

    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

  6. Underutilization of palliative care services in the liver transplant population

    PubMed Central

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

    2016-01-01

    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.

  7. Palliative Care

    MedlinePlus

    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 ...

  8. Palliative care providers' perspectives on service and education needs.

    PubMed

    Sellick, S M; Charles, K; Dagsvik, J; Kelley, M L

    1996-01-01

    To obtain the information necessary for coordinated regional program development, we examined (a) the multidisciplinary viewpoint of palliative care service provision and (b) the continuing education needs reported by non-physician service providers. Of 146 surveys distributed to care providers from multiple settings, 135 were returned. Respondents cited these problems: fragmented services, poor pain and symptom control, lack of education for providers, lack of public awareness, problems with the continuity and coordination of care, lack of respite, and lack of hospice beds. Stress management for caregivers, pain management, communication skills, and symptom assessment were rated as priorities in continuing education. Lectures, small group discussions, practicum, and regular medical centre rounds were the preferred learning formats, while costs and staff shortages were cited as educational barriers.

  9. Developing Successful Models of Cancer Palliative Care Services

    PubMed Central

    Bakitas, Marie; Bishop, Margaret Firer; Caron, Paula; Stephens, Lisa

    2010-01-01

    Objectives This article describes successful institutionally-based programs for providing high quality palliative care to people with cancer and their family members. Challenges and opportunities for program development are also described. Data Sources Published literature from 2000 to present describing concurrent oncology palliative care clinical trials, standards and guidelines were reviewed. Conclusion Clinical trials have demonstrated feasibility and positive outcomes and formed the basis for consensus guidelines that support concurrent oncology palliative care models. Implications for nursing practice Oncology nurses should advocate for all patients with advanced cancer and their families to have access to concurrent oncology palliative oncology care from the time of diagnosis with a life-limiting cancer. PMID:20971407

  10. What is palliative care?

    MedlinePlus

    Comfort care; End of life - palliative care; Hospice - palliative care ... Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is ...

  11. Hospice and palliative care development in India: a multimethod review of services and experiences.

    PubMed

    McDermott, Elizabeth; Selman, Lucy; Wright, Michael; Clark, David

    2008-06-01

    Palliative care has been developing in India since the mid-1980s, but there is a dearth of evidence about service provision on which to base national policy and practice. The aim of this study was to assess the current state of palliative care in India, mapping the existence of services state by state, and documenting the perspectives and experiences of those involved. A multimethod review was used, which included synthesis of evidence from published and grey literature, ethnographic field visits, qualitative interviews with 87 individuals from 12 states, and collation of existing public health data. The review identified 138 hospice and palliative care services in 16 states and union territories. These are mostly concentrated in large cities, with the exception of Kerala, where they are much more widespread. Nongovernmental organizations, public and private hospitals, and hospices are the predominant sources of provision. We were unable to identify palliative care services in 19 states/union territories. Development of services is uneven, with greater provision evident in the south than the north, but for the majority of states, coverage is poor. Barriers to the development of palliative care include: poverty, population density, geography, opioid availability, workforce development, and limited national palliative care policy. Successful models exist for the development of affordable, sustainable community-based palliative care services. These have arisen from adapting Western models of hospice and palliative care for implementation in the Indian cultural context. Further work is required to ensure that the growing interest in hospice and palliative care in India is used to increase the momentum of progress.

  12. Palliative Care in Cancer

    MedlinePlus

    ... palliative care is beneficial? Yes. Research shows that palliative care and its many components are beneficial to patient and family health and well-being. A number of studies in recent years have shown that patients who ...

  13. Coverage and development of specialist palliative care services across the World Health Organization European Region (2005–2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries

    PubMed Central

    Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David

    2015-01-01

    Background: The evolution of the provision of palliative care specialised services is important for planning and evaluation. Aim: To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region – home care teams, hospital support teams and inpatient palliative care services. Design and setting: Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Results: Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005–2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Conclusion: Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient

  14. Palliative care in Thailand.

    PubMed

    Krongyuth, Panit; Campbell, Cathy L; Silpasuwan, Pimpan

    2014-12-01

    In Thailand, several barriers exist that prevent people with life-limiting illnesses from accessing good-quality palliative care, namely: lack of palliative care providers; lack of training and education for the palliative care workforce; and issues with availability and distribution of opioids. Without palliative care, people suffer needlessly during the last months of their life. This paper gives an analysis of these issues and provides recommendations for clinical practice, research and health policy that may help to alleviate these issues.

  15. Availability of palliative care services for children with cancer in economically diverse regions of the world

    PubMed Central

    Delgado, Eduardo; Barfield, Raymond C.; Baker, Justin N.; Hinds, Pamela S.; Yang, Jie; Nambayan, Ayda; Quintana, Yuri; Kane, Javier R

    2010-01-01

    Purpose We assessed the availability and quality of palliative care for children with cancer according to national income per capita. Methods We surveyed physicians who care for children with cancer using the Cure4Kids website (http://www.cure4kids.org). Queries addressed oncology practice site; reimbursement; specialized palliative care, pain management, and bereavement care; location of death; decision-making support; and perceived quality of care. Responses were categorized by low -, middle-, and high-income country (LIC, MIC, HIC). Results Of 262 completed questionnaires from 58 countries (response rate, 59.8%), 242 were evaluable (55%). Out-of-pocket payment for oncology (14.8%), palliative care (21.9%), and comfort care medications (24.3%) was most likely to be required in LIC (p<0.001). Availability of specialized palliative care services, pain management, bereavement care, and institutional or national decision-making support was inversely related to income level. Availability of high-potency opioids (p=0.018) and adjuvant drugs (p=0.006) was significantly less likely in LIC. Physicians in LIC were significantly less likely than others to report high-quality pain control (p<0.001), non-pain symptom control (p=0.003), and emotional support (p=0.001); bereavement support (p=0.035); interdisciplinary care (p<0.001); and parental participation in decisions (p=0.013). Conclusion Specialized palliative care services are unavailable to children with cancer in economically diverse regions, but particularly in LIC. Access to adequate palliation is associated with national income. Program development strategies and collaborations less dependent on a single country’s economy are suggested. PMID:20541395

  16. Referral to a specialist paediatric palliative care service in oncology patients.

    PubMed

    Fraser, Lorna K; Miller, Michael; McKinney, Patricia A; Parslow, Roger C; Feltbower, Richard G

    2011-04-01

    Cancer is the second most common cause of death in children and young people (0-19 years) accounting for 16.2% of deaths in England and Wales in 2005. Only 37.6% children and young people who died from cancer in Yorkshire were referred to Martin House Children's Hospice (MH) during the period 1990-2005. A significantly higher proportion with central nervous system tumours and a significantly lower than expected proportion with leukaemia or lymphoma were referred for palliative care. There is potential to increase the proportion of children and young people with cancer who are referred to specialist palliative care services.

  17. Pediatric palliative care.

    PubMed

    Moody, Karen; Siegel, Linda; Scharbach, Kathryn; Cunningham, Leslie; Cantor, Rabbi Mollie

    2011-06-01

    Progress in pediatric palliative care has gained momentum, but there remain significant barriers to the appropriate provision of palliative care to ill and dying children, including the lack of properly trained health care professionals, resources to finance such care, and scientific research, as well as a continued cultural denial of death in children. This article reviews the epidemiology of pediatric palliative care, special communication concerns, decision making, ethical and legal considerations, symptom assessment and management, psychosocial issues, provision of care across settings, end-of-life care, and bereavement. Educational and supportive resources for health care practitioners and families, respectively, are included.

  18. Cancer rehabilitation and palliative care: critical components in the delivery of high-quality oncology services.

    PubMed

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

    2015-12-01

    Palliative care and rehabilitation practitioners are important collaborative referral sources for each other who can work together to improve the lives of cancer patients, survivors, and caregivers by improving both quality of care and quality of life. Cancer rehabilitation and palliative care involve the delivery of important but underutilized medical services to oncology patients by interdisciplinary teams. These subspecialties are similar in many respects, including their focus on improving cancer-related symptoms or cancer treatment-related side effects, improving health-related quality of life, lessening caregiver burden, and valuing patient-centered care and shared decision-making. They also aim to improve healthcare efficiencies and minimize costs by means such as reducing hospital lengths of stay and unanticipated readmissions. Although their goals are often aligned, different specialized skills and approaches are used in the delivery of care. For example, while each specialty prioritizes goal-concordant care through identification of patient and family preferences and values, palliative care teams typically focus extensively on using patient and family communication to determine their goals of care, while also tending to comfort issues such as symptom management and spiritual concerns. Rehabilitation clinicians may tend to focus more specifically on functional issues such as identifying and treating deficits in physical, psychological, or cognitive impairments and any resulting disability and negative impact on quality of life. Additionally, although palliative care and rehabilitation practitioners are trained to diagnose and treat medically complex patients, rehabilitation clinicians also treat many patients with a single impairment and a low symptom burden. In these cases, the goal is often cure of the underlying neurologic or musculoskeletal condition. This report defines and describes cancer rehabilitation and palliative care, delineates their

  19. Developing a template to plan palliative care services: the Welsh experience.

    PubMed

    Finlay, Ilora G

    2009-07-01

    Much specialist palliative care in the U.K. is provided through the voluntary sector, with funding in part from the National Health Service and the remainder from donations. Service development has been ad hoc to date. In Wales, with a population of just under three million, the Minister has allocated specific ring fenced funding for the voluntary sector, to ensure that there is equity of evidence-based care provision. To do this, a formula has been developed to meet the specialist palliative care needs across Wales, appropriate to both urban and rural settings, for populations of all ages and to take into account the requirements for hospital support teams and those working in cancer centers. In addition, where hospice inpatient beds exist, a funding formula has been developed to guide reimbursement for basic care costs. Where there are no beds, hospice-at-home provision provides an alternative model of care, with funding adjusted pro rata. The formula aims to ensure fairness of specialist palliative care provision, available out of hours as well as during the working day, providing patient-focused evidence-based care. This means that the specialist team must meet specialist education standards, act as a resource to generalist teams and use a core clinical data set to allow comparable audits against agreed all-Wales standards.

  20. 78 FR 35942 - Proposed Collection; Comment Request: Palliative Care: Conversations Matter Evaluation

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-14

    ... HUMAN SERVICES National Institutes of Health Proposed Collection; Comment Request: Palliative Care.... Proposed Collection Palliative Care: Conversations Matter Evaluation -0925--New--National Institute of... developed Palliative Care: Conversations Matter, a pediatric palliative care campaign to address...

  1. Nonwhite ethnicity and the provision of specialist palliative care services: factors affecting doctors' referral patterns.

    PubMed

    Karim, K; Bailey, M; Tunna, K

    2000-11-01

    The aim of this paper was to examine the use of palliative care services by members of black/minority ethnic communities. Referral patterns of hospital consultants and general practitioners (GPs) to Birmingham St Mary's Hospice were examined. Semistructured interviews were carried out to explore doctors' perceptions of the benefits and limitations of hospice services for their black/minority ethnic patients and to identify potential barriers to referral. In total, 27 doctors were interviewed: 15 hospital consultants and 12 GP. The GPs were selected according to size of practice within areas of Birmingham with significant black/minority ethnic populations. Referrals received by the hospice for the period April 1996 to November 1997 were collected from the Hospice's computerized database. Results show that, compared to white Europeans, there was an underutilization of day care and inpatient hospice services by members of black/minority ethnic communities. Doctors did, however, refer their black/minority ethnic patients for hospice home-care services: 8.5% of referrals received by the hospice were for nonwhite patients. This referral rate increased to 19.3% in specific postcode areas known to have significant black/minority ethnic communities. Further research is needed to establish levels of awareness, explore attitudes towards palliative care services and assess the demand for specific services within various black/minority ethnic communities.

  2. 'Good palliative care' orders.

    PubMed

    Maddocks, I

    1993-01-01

    A Select Committee of the Parliament of South Australia, considering revisions to legislation governing care of the dying, did not support allowing doctors to assist suicide. They recommended that no liability attach to the provision of reasonable palliative care which happens to shorten life. The Committee affirmed the suggestion that positive open orders to provide 'good palliative care' should replace 'do not resuscitate' orders. PMID:7506978

  3. Spirituality and Palliative Care

    PubMed Central

    Broeckaert, Bert

    2011-01-01

    This paper shows how palliative care developed as a reaction to the compartimentalized technical approach of modern medicine. But what does it mean if we say palliative care wants to treat patients as whole persons? A few pitfalls need to avoided. All disciplines involved in palliative care should act within the limits of their own specific professional role. Physicians and nurses should certainly not force patients into spiritual or religious discussions or practices. They should understand that religion and spirituality also influence the ethical (and thus medical) choices people make, respect their own conscience and worldview too and cultivate conscious compassion. PMID:21811369

  4. Integrating Palliative Care into Primary Care.

    PubMed

    Gorman, Rosemary D

    2016-09-01

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

  5. 78 FR 53152 - Submission for OMB Review; Comment Request: Palliative Care: Conversations Matter Evaluation

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-08-28

    ... HUMAN SERVICES National Institutes of Health Submission for OMB Review; Comment Request: Palliative Care... requested in writing. Proposed Collection: Palliative Care: Conversations Matter Evaluation, -0925-New... Information Collection: NINR developed Palliative Care: Conversations Matter, a pediatric palliative...

  6. Why palliative care?

    PubMed

    Nyman, K

    1994-07-01

    And so there we have it in a nutshell--palliative care is about caring. Caring for those who are dying and for those who look after them and then grieve their loss. Palliative care has risen like a phoenix from the ashes of neglect and bad management which, until recently, had been the lot of the dying. Perhaps this new specialty may become a guiding beacon leading a profession, somewhat bewitched and side tracked by its own scientific cleverness, back to the road of caring. I sincerely hope that as the specialty gains recognition it does not lose its present identify and fine sense of purpose.

  7. Meditation and palliative care.

    PubMed

    Van Tilburg, E

    1991-01-01

    Embert Van Tilburg, a specialist in palliative care, shares his insights about the total care of those who are terminally ill due to cancer or AIDS, or of the many elderly who are "dying in the slow lane" in so many of our chronic care institutions.

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

    MedlinePlus

    ... Questions Frequently Asked Questions: What is pediatric palliative care? Pediatric palliative (pal-lee-uh-tiv) care is ... for patients and families. Who provides pediatric palliative care? Every palliative care team is different. The team ...

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

    ERIC Educational Resources Information Center

    Pollens, Robin D.

    2012-01-01

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

  10. Turkish healthcare professionals' views on palliative care.

    PubMed

    Turgay, Gulay; Kav, Sultan

    2012-01-01

    The concept of modern palliative care has been disseminating slowly in Turkey and has recently been included in the National Cancer Control Program. The aim of this study was to explore healthcare professionals' knowledge and views of palliative care. It was conducted at three hospitals with a sample of 369 healthcare professionals working in adult clinics. Data were collected via open-ended questions and 16 statements from healthcare professionals on their views of palliative care. Most respondents stated that there was a lack of in-service/continuing education in palliative care, and more than half said they had not received any education in palliative care. A majority stated that the meaning and goal of palliative care is "improving the quality of life of a patient who is in the terminal stage." Lack of awareness of palliative care and a lack of educational resources in that field are the most frequently reported barriers to the development of palliative care in Turkey. Palliative care should be included in curricula for healthcare professionals and in-service education programs should be established. PMID:23413762

  11. Oncologist Factors That Influence Referrals to Subspecialty Palliative Care Clinics

    PubMed Central

    Schenker, Yael; Crowley-Matoka, Megan; Dohan, Daniel; Rabow, Michael W.; Smith, Cardinale B.; White, Douglas B.; Chu, Edward; Tiver, Greer A.; Einhorn, Sara; Arnold, Robert M.

    2014-01-01

    Purpose: Recent research and professional guidelines support expanded use of outpatient subspecialty palliative care in oncology, but provider referral practices vary widely. We sought to explore oncologist factors that influence referrals to outpatient palliative care. Methods: Multisite, qualitative interview study at three academic cancer centers in the United States with well-established palliative care clinics. Seventy-four medical oncologists participated in semistructured interviews between February and October 2012. The interview guide asked about experiences and decision making regarding outpatient palliative care use. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine themes related to palliative care referral decisions. Results: We identified three main oncologist barriers to subspecialty palliative care referrals at sites with comprehensive palliative care clinics: persistent conceptions of palliative care as an alternative philosophy of care incompatible with cancer therapy, a predominant belief that providing palliative care is an integral part of the oncologist's role, and a lack of knowledge about locally available services. Participants described their views of subspecialty palliative care as evolving in response to increasing availability of services and positive referral experiences, but emphasized that views of palliative care as valuable in addition to standard oncology care were not universally shared by oncologists. Conclusions: Improving provision of palliative care in oncology will likely require efforts beyond increasing service availability. Raising awareness of ways in which subspecialty palliative care complements standard oncology care and developing ways for oncologists and palliative care physicians to collaborate and integrate their respective skills may help. PMID:24301842

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

    PubMed Central

    Higginson, Irene J; Hart, Sam; Burman, Rachel; Silber, Eli; Saleem, Tariq; Edmonds, Polly

    2008-01-01

    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 associated with

  13. Evaluation of clinical pharmacy services offered for palliative care patients in Qatar.

    PubMed

    Wilby, Kyle John; Mohamad, Alaa Adil; AlYafei, Sumaya AlSaadi

    2014-09-01

    Palliative care is an emerging concept in the countries of the Gulf Cooperation Council, a political and economic union of Arab states bordering the Persian Gulf, namely Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates. Clinical pharmacy services have not yet been evaluated in this region. The objectives of this study were to create a baseline inventory of clinical pharmacy interventions in palliative care and to assess the perceived importance of interventions made. This was a prospective, single-center characterization study. Interventions were documented from September 30 to December 1, 2013. They were characterized into predetermined categories and analyzed using descriptive statistics. Physician acceptance rate and intervention rate per patient were calculated. Classification categories were sent to 10 practicing pharmacists in each of Qatar and Canada, who ranked the categories on the basis of perceived importance. A total of 96 interventions were documented, giving 3 interventions per patient and an acceptance rate of 81%. Discontinuing therapy (29%), initiating therapy (25%), and provision of education/counseling (13.5%) were most common. No differences were found between rankings from pharmacists in Qatar or Canada. Clinical pharmacy interventions are frequent, and those relating to alterations in drug therapy are most common. Interventions align with the perceived importance from pharmacists in both Qatar and Canada.

  14. The development of a 7-day community specialist palliative care service.

    PubMed

    Gallagher, Jennifer

    2013-12-01

    The author worked as a clinical nurse specialist (CNS) in community palliative care in the Central Lancashire area of England when the CNS service was extended to a 9am-to-5pm 7-day service. A project group was set up to canvas some of the key stakeholders for their views on the extension of the service. The group undertook a literature search, a telephone survey of services in other areas that were providing this level of service, and interviews to ascertain the views of district nurses in the locality of the proposed service extension. The extension of service has long been advocated and was one of the key recommendations in the UK Department of Health's peer-review process. Such an extension was implemented following the research phase and was then evaluated by the project lead and the community services manager. The extension was found to be effective in the ongoing monitoring and support of patients. Anecdotally, the CNS team also felt it had been proactive in preventing unnecessary hospital admissions, although this specific aspect is difficult to quantify. This article looks at how the service was developed, how it has evolved over time, and how it works today. Consideration is also given to benefits and limitations. PMID:24356506

  15. The Use of Inpatient Palliative Care Services In Patients With Metastatic Incurable Head and Neck Cancer

    PubMed Central

    Mulvey, Carolyn L.; Smith, Thomas J.; Gourin, Christine G.

    2015-01-01

    Background Substantial health care resources are used on aggressive end-of-life care, despite an increasing recognition that palliative care improves quality of life and reduces health care costs. We examined the incidence of palliative care encounters in inpatients with incurable head and neck cancer (HNCA) and associations with in-hospital mortality, length of hospitalization, and costs. Methods Data from the Nationwide Inpatient Sample for 80,514 HNCA patients with distant metastatic disease in 2001–2010 was analyzed using cross-tabulations and multivariate regressions. Results Palliative care encounters occurred in 4,029 cases (5%) and were significantly associated with age ≥80 years, female sex, self-pay pay or status, and prior radiation. Palliative care was significantly associated with increased in-hospital mortality and reduced hospital-related costs. Conclusions Inpatient palliative care consultation in terminal HNCA is associated with reduced hospital-related costs, but appears to be underutilized and restricted to the elderly, uninsured, and patients with an increased risk of mortality. PMID:25331744

  16. Impact of Palliative Care Consultation Service on Terminally Ill Cancer Patients

    PubMed Central

    Lu, Ching-Yi; Shen, Wen-Chi; Kao, Chen-Yi; Wang, Hung-Ming; Tang, Shu-Chuan; Chin, Tsu-Ling; Chi, Chuan-Chuan; Yang, Jin-Mei; Chang, Chih-Wen; Lai, Ying-Fen; Yeh, Ya-Chi; Hung, Yu-Shin; Chou, Wen-Chi

    2016-01-01

    Abstract The palliative care consultation service (PCCS) that has been enthusiastically promoted in Taiwan since 2005 was designed to provide comprehensive end-of-life care for terminally ill patients with qualified interdisciplinary specialists in acute care ward setting. This study aims to evaluate the impact of PCCS on terminally ill cancer patients. A total of 10,594 terminal cancer patients who were referred to PCCS from a single medical center in Taiwan between 2006 and 2014 were enrolled. The percentages of patients’ and their families’ disease awareness, do-not-resuscitate (DNR) designation, refusal and acceptance of palliative care among terminally ill cancer patients were analyzed retrospectively. At the beginning of PCCS, the percentages of disease awareness among patients and their family were increased from 25.4% to 37.9% (P = 0.007) and from 61.2% to 84.7% between 2006 and 2014 (P = 0.001), respectively. Patients’ disease awareness after PCCS referral between 2006 and 2014 was increased from 47.1% to 64.5% (P = 0.016). Family's awareness of diagnosis and prognosis after PCCS referral researched to a steady plateau, 94.1% to 97.8% in different year cohort (P = 0.34). The percentage of DNR designation rate at the beginning of PCCS (in 2006) was 15.5%, and the designation rate was increased annually and finally reached to 42.0% in 2014 (P = 0.004). The percentage of DNR consents after PCCS was also improved from 44.0% in 2006 up to 80.0% in 2014 (P = 0.005). PCCS refusal rate decreased gradually and dropped to 1.6% in 2014 (P = 0.005). The percentage of PCCS utilization was increased 5-fold during the 9-year period after the promotion of PCCS In the program of PCCS promotion, an increasing trend of PCCS utilization, better patients’ and their families’ awareness of diagnosis and prognosis, more consent to DNR, more patients were discharged with stable condition at the end of PCCS and a decrease refusal rate of end

  17. Risk Factors for Anticipatory Grief in Family Members of Terminally Ill Veterans Receiving Palliative Care Services.

    PubMed

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

    2015-01-01

    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. PMID:26654060

  18. The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada.

    PubMed

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

    2014-01-01

    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. PMID:23758771

  19. Pharmaceutical services in a Mexican pain relief and palliative care institute

    PubMed Central

    Escutia Gutiérrez, Raymundo; Cortéz Álvarez, César R.; Álvarez Álvarez, Rosa M.; Flores Hernández, Jorge LV.; Gutiérrez Godínez, Jéssica; López Y López, José G.

    Neither the purchase nor the distribution of pharmaceuticals in hospitals and community pharmacies in Mexico is under the care of pharmacists. Some are under control of physicians. This report presents the results of the implementation of somef pharmaceutical services for the Jalisco Pain Relief, and Palliative Care Institute (Palia Institute), under the direction of the Secretary of Health, Government of Jalisco. The services implemented were drug distribution system, Drug Information Service, Pharmacovigilance Program, and home pharmacotherapy follow-up pilot program for patients with advanced illness, with the ultimate using the appropriate medication. The drug distribution system included dispensing of opioid pain medications, antidepressants, anticonvulsants, NSAIDs, anxiolytic drugs, steroid drugs, laxatives, and anti-emetics. The frequently used drugs were morphine sulfate (62%), amitriptyline (6.4%), and dextropropoxyphene (5.8%). The Drug Information Service answered 114 consultations, mainly asked by a physician (71%) concerned with adverse drug reactions and contraindications (21%). The pharmacovigilance program identified 146 suspected adverse drug reactions and classified them reasonably as possible (27%), probable (69%), and certain (4%). These were attributed mainly to pregabalin and tramadol. The home pharmacotherapy follow-up pilot program cared patients with different cancer diagnoses and drug-related problems (DRP), which were identified and classified (according to second Granada Consensus) for pharmaceutical intervention as DRP 1 (5%), DRP 2 (10%), DRP 3 (14%), DRP 4 (19%), DRP 5 (24%), or DRP 6 (28%). This report provides information concerning the accurate use of medication and, above all, an opportunity for Mexican pharmacists to become an part of health teams seeking to resolve drug-related problems. PMID:25170355

  20. [Palliative care for glioblastoma].

    PubMed

    Dieudonné, Nathalie; De Micheli, Rita; Hottinger, Andreas

    2016-04-27

    Patients with glioblastoma have a limited life expectancy and an impaired quality of life and they should be offered palliative care soon after the diagnosis is established. Still, only a quarter of patients aged over 65 return home or medical institution after completing treatments. Home care must be promoted by coordinating assistance and care, combining disciplines such as physiotherapy and ergotherapy, medical and nursing care and psychosocial support. Patients are at risk of mood, personality and behavioural disorders. Limited awareness of these troubles and their physical limitations alter their capacity of rehabilitation and social relationships. Isolation of relatives, exhaustion and misunderstandings should be prevented. The therapeutic goals should be discussed and determined upstream to anticipate difficulties and questions concerning end of life. PMID:27281945

  1. Sexuality in palliative care: patient perspectives.

    PubMed

    Lemieux, Laurie; Kaiser, Stefanie; Pereira, Jose; Meadows, Lynn M

    2004-10-01

    This qualitative study investigated the meaning of sexuality to palliative patients. Face-to-face interviews were conducted with ten patients receiving care in a tertiary palliative care unit, a hospice or by palliative home care services in their homes. Several themes emerged. Emotional connection to others was an integral component of sexuality, taking precedence over physical expressions. Sexuality continues to be important at the end of life. Lack of privacy, shared rooms, staff intrusion and single beds were considered barriers to expressing sexuality in the hospital and hospice settings. Only one subject had previously been asked about sexuality as part of their clinical care, yet all felt that it should have been brought up, especially after the initial cancer treatments were completed. Home care nurses and physicians were seen as the appropriate caregivers to address this issue. Subjects unanimously mentioned that a holistic approach to palliative care would include opportunities to discuss the impact of their illness on their sexuality.

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

    PubMed Central

    Gomes, Barbara; Calanzani, Natalia; Curiale, Vito; McCrone, Paul; Higginson, Irene J

    2013-01-01

    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 summarise the current evidence on cost-effectiveness. 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 (CHF), chronic obstructive

  3. A qualitative study examining the sustainability of shared care in the delivery of palliative care services in the community

    PubMed Central

    2013-01-01

    Background This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind. Methods Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams. Results Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale to better illustrate how actors and organizations could move forward. Conclusions This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared

  4. Need for palliative care for neurological diseases.

    PubMed

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

    2016-10-01

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

  5. Need for palliative care for neurological diseases.

    PubMed

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

    2016-10-01

    The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients. PMID:27299428

  6. Community Pharmacists' Attitudes Toward Palliative Care: An Australian Nationwide Survey

    PubMed Central

    Hewitt, Lauren Y.; Tuffin, Penelope H.R.

    2013-01-01

    Abstract Background: Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. Objective: We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. Method: A cross-sectional descriptive survey design was used. Subjects: Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. Measurements: A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Results: Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted—and therefore underpinned—a positive attitude towards palliative care and the provision of services and supports for palliative care patients. Conclusion: The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on. PMID:24147876

  7. Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar

    PubMed Central

    2013-01-01

    Background Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently

  8. Palliative Care in Iran: Moving Toward the Development of Palliative Care for Cancer.

    PubMed

    Rassouli, Maryam; Sajjadi, Moosa

    2016-04-01

    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.

  9. Palliative care situation in Palestinian Authority.

    PubMed

    Shawawra, Mousa; Khleif, Amal Dweib

    2011-04-01

    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

  10. Training Physicians in Palliative Care.

    ERIC Educational Resources Information Center

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

    1999-01-01

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

  11. Situational Analysis of Palliative Care Education in Thai Medical Schools

    PubMed Central

    Suvarnabhumi, Krishna; Sowanna, Non; Jiraniramai, Surin; Jaturapatporn, Darin; Kanitsap, Nonglak; Soorapanth, Chiroj; Thanaghumtorn, Kanate; Limratana, Napa; Akkayagorn, Lanchasak; Staworn, Dusit; Praditsuwan, Rungnirand; Uengarporn, Naporn; Sirithanawutichai, Teabaluck; Konchalard, Komwudh; Tangsangwornthamma, Chaturon; Vasinanukorn, Mayuree; Phungrassami, Temsak

    2013-01-01

    Objective The Thai Medical School Palliative Care Network conducted this study to establish the current state of palliative care education in Thai medical schools. Methods A questionnaire survey was given to 2 groups that included final year medical students and instructors in 16 Thai medical schools. The questionnaire covered 4 areas related to palliative care education. Results An insufficient proportion of students (defined as fewer than 60%) learned nonpain symptoms control (50.0%), goal setting and care planning (39.0%), teamwork (38.7%), and pain management (32.7%). Both medical students and instructors reflected that palliative care education was important as it helps to improve quality of care and professional competence. The percentage of students confident to provide palliative care services under supervision of their senior, those able to provide services on their own, and those not confident to provide palliative care services were 57.3%, 33.3%, and 9.4%, respectively. Conclusions The lack of knowledge in palliative care in students may lower their level of confidence to practice palliative care. In order to prepare students to achieve a basic level of competency in palliative care, each medical school has to carefully put palliative care content into the undergraduate curriculum. PMID:25278759

  12. Center to Advance Palliative Care

    MedlinePlus

    ... Take me to the Registry Registry Jobs For Job Seekers CAPC posts positions for palliative care professionals ... field. Browse the listings , and please contact the job poster directly for further information. Browse Jobs For ...

  13. Palliative and hospice care in gynecologic cancer: a review.

    PubMed

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

    2013-10-01

    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.

  14. Ideals and compromises in palliative care.

    PubMed

    Philip, Jennifer A M; Komesaroff, Paul

    2006-12-01

    This qualitative study explores the concept of ideal palliative care as it broadens its field of application from terminal care to include people earlier in the course of an illness. Focus groups were held with palliative care professionals from community, inpatient, and hospital consultancy services to examine this issue. Palliative care professionals have clear views of what constitutes ideal care that include: establishing a relationship, setting goals, communication, acceptance, advocacy, flexibility, symptom relief, and recognising the identity of each person. There was agreement upon the nature of obstacles that prevented ideal care being achieved including obstacles created by families, other health professionals, administrative structures, and conflicts between the aims of care for a particular patient. Finally each clinician has a well-developed set of personal views of the acceptable limits to practice, although these views vary widely. The clusters of ideas emerging in this study describe three objects of different ontologic status. The elements of ideal care are conceptual in nature, highlighting the aspirations for workers. The obstacles reflect the real world that palliative care professionals must negotiate each day, giving rise to a form of care that was good enough. The acceptable standards and their limits is the degree to which staff will or will not accept the compromises in care raised by the real world of practice, reflecting the ethical stance of the workers. The pursuit of ideal care may be motivated by a complex mix of aspirations, real-world practicalities and fulfilment for both patients and staff.

  15. Providing paediatric palliative care: collaboration in practice.

    PubMed

    Farrell, M; Sutherland, P

    One of the main aims of palliative care is to enable clients to receive and access services in a way that maximizes their choice in relation to where, when and how they receive care. To achieve this end, it is essential that statutory and voluntary care agencies collaborate to provide an effective range of services. This article offers for consideration the experience of a children's hospice service and a paediatric oncology outreach service who collaborated to provide a service for children requiring paediatric and terminal care. It identifies a number of elements which are important for positive and effective collaboration.

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

    PubMed Central

    Gomes, Barbara; Calanzani, Natalia; Curiale, Vito; McCrone, Paul; Higginson, Irene J

    2013-01-01

    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 summarise the current evidence on cost-effectiveness. 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 (CHF), chronic obstructive

  17. Rawlsian Justice and Palliative Care.

    PubMed

    Knight, Carl; Albertsen, Andreas

    2015-10-01

    Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and 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.

  18. [Seeds of palliative care: nurses' discourse order].

    PubMed

    da Silva, Karen Schein; Kruse, Maria Henriqueta Luce

    2009-06-01

    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.

  19. Policy analysis: palliative care in Ireland.

    PubMed

    May, Peter; Hynes, Geralyn; McCallion, Philip; Payne, Sheila; Larkin, Philip; McCarron, Mary

    2014-03-01

    Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the 'policy analysis triangle' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation. PMID:23932413

  20. End-of-life care in Germany: Study design, methods and first results of the EPACS study (Establishment of Hospice and Palliative Care Services in Germany)

    PubMed Central

    2010-01-01

    Background In order to tackle the deficits in the provision of palliative home care, profound structural changes in the outpatient sector were introduced by law in Germany in 2007. The EPACS study was carried out (Research Accompanying the Establishment of Hospice and Palliative Care Services in Rhineland-Palatinate, Germany) to document the quality of inpatient and outpatient end-of-life care in Rhineland-Palatinate, Germany, before the implementation of these changes. With this article we focus on the study design and methods of the EPACS-Study. We further report first results regarding several aspects of outpatient end-of-life care. Methods The cross-sectional survey was based on a random sample of 5000 inhabitants of Rhineland-Palatinate that had died from May 25 until August 24 of the year 2008. Relatives of these randomly drawn deceased persons were interviewed by means of a written survey. Results The overall response proportion considering only those questionnaires that actually were delivered (n = 3833) was 36.0%. Factors influencing participation were age, sex, and marital status. 355 (25.8%) deceased persons had used professional home care in the four weeks prior to their death, but only very few persons had used a specialised palliative home care service (n = 30; 8.5%). There was a clear gap between the need for specialised outpatient care and the actual utilisation of these services. Conclusions Satisfaction with professional home care was relatively high, but physicians were rated less favourable than nurses. There were deficits especially with respect to physicians' communicative and supportive skills. Further analyses are necessary to provide more detailed information about quality of care in different care settings and for distinct groups. Predictors of good care, as well as obstacles to it, must be further investigated. In the long run, a follow-up survey must be conducted to compare quality of home care before and after the structural changes in

  1. Palliative Care Doula: an innovative model.

    PubMed

    Lentz, Judy C

    2014-01-01

    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.

  2. The Quality Imperative for Palliative Care

    PubMed Central

    Kamal, Arif H.; Hanson, Laura C.; Casarett, David J.; Dy, Sydney M.; Pantilat, Steven Z.; Lupu, Dale; Abernethy, Amy P.

    2015-01-01

    Palliative medicine must prioritize the routine assessment of the quality of clinical care we provide. This includes regular assessment, analysis, and reporting of data on quality. Assessment of quality informs opportunities for improvement and demonstrates to our peers and ourselves the value of our efforts. In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the United States shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), “here is what we do,” and increase the focus on “this is how well we do it” and “let’s see how we can do it better.” It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline. PMID:25057987

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

    PubMed

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

    2015-01-01

    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. Impact of Specialist Home-Based Palliative Care Services in a Tertiary Oncology Set Up: A Prospective Non-Randomized Observational Study

    PubMed Central

    Dhiliwal, Sunil R; Muckaden, Maryann

    2015-01-01

    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. PMID:25709182

  5. Pediatric Palliative Care at a Glance

    MedlinePlus

    ... can care start? • Receive services, like art or music therapy • Find ways to relax and play Palliative ... Nurses • Child life specialists • Respite providers • Art and music therapists • Chaplains • Case managers • Counselors • Home health aides • ...

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

    PubMed

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

    2014-08-01

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

  7. The Israel Cancer Association's role as a volunteer organization in forecasting, establishing, implementing and upgrading palliative care services in Israel.

    PubMed

    Kislev, Livia; Yaffe, Aliza; Ziv, Miri; Waller, Alexander

    2013-10-01

    The Israel Cancer Association has contributed, as a key player, to the establishment and upgrade of palliative care in Israel. The aim of this article is to describe the involvement and contribution of the ICA, as a volunteer organization, from a clinical, educational, legal, and organizational perspective. Another main goal of this survey is to shed light on the palliative care network in Israel, in each one of these infrastructures.

  8. Mapping levels of palliative care development: a global update.

    PubMed

    Lynch, Thomas; Connor, Stephen; Clark, David

    2013-06-01

    Our purpose is to categorize palliative care development, country by country, throughout the world, showing changes over time. We adopt a multi-method approach. Development is categorized using a six-part typology: Group 1 (no known hospice-palliative care activity) and Group 2 (capacity-building activity) are the same as developed during a previous study (2006), but Groups 3 and 4 have been subdivided to produce two additional levels of categorization: 3a) Isolated palliative care provision, 3b) Generalized palliative care provision, 4a) Countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision, and 4b) Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision. In 2011, 136 of the world's 234 countries (58%) had at least one palliative care service--an increase of 21 (+9%) from 2006, with the most significant gains having been made in Africa. Advanced integration of palliative care has been achieved in only 20 countries (8.5%). Total countries in each category are as follows: Group 1, 75 (32%); Group 2, 23 (10%); Group 3a, 74 (31.6%); Group 3b, 17 (7.3%); Group 4a, 25 (10.7%); and Group 4b, 20 (8.5%). Ratio of services to population among Group 4a/4b countries ranges from 1:34,000 (in Austria) to 1:8.5 million (in China); among Group 3a/3b countries, from 1:1000 (in Niue) to 1:90 million (in Pakistan). Although more than half of the world's countries have a palliative care service, many countries still have no provision, and major increases are needed before palliative care is generally accessible worldwide. PMID:23017628

  9. Pediatric End-of-Life Issues and Palliative Care

    PubMed Central

    Michelson, Kelly Nicole; Steinhorn, David M.

    2007-01-01

    Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care. In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information. PMID:18438449

  10. Palliative Care in Lung Cancer.

    PubMed

    Shinde, Arvind M; Dashti, Azadeh

    2016-01-01

    Lung cancer is the most common cancer worldwide and is the leading cause of cancer death for both men and women in the USA. Symptom burden in patients with advanced lung cancer is very high and has a negative impact on their quality of life (QOL). Palliative care with its focus on the management of symptoms and addressing physical, psychosocial, spiritual, and existential suffering, as well as medically appropriate goal setting and open communication with patients and families, significantly adds to the quality of care received by advanced lung cancer patients. The Provisional Clinical Opinion (PCO) of American Society of Clinical Oncology (ASCO) as well as the National Cancer Care Network's (NCCN) clinical practice guidelines recommends early integration of palliative care into routine cancer care. In this chapter, we will provide an overview of palliative care in lung cancer and will examine the evidence and recommendations with regard to a comprehensive and interdisciplinary approach to symptom management, as well as discussions of goals of care, advance care planning, and care preferences. PMID:27535397

  11. Hearing Loss in Palliative Care

    PubMed Central

    Jain, Nelia; Wallhagen, Margaret L.

    2015-01-01

    Abstract Background: Age-related hearing loss is remarkably common, affecting more than 60% of adults over the age of 75. Moreover, hearing loss has detrimental effects on quality of life and communication, outcomes that are central to palliative care. Despite its high prevalence, there is remarkably little written on the impact of hearing loss in the palliative care literature. Objective: The objective was to emphasize its importance and the need for further study. We use a case as a springboard for discussing what is known and unknown about the epidemiology, presentation, screening methodologies, and treatment strategies for age-related hearing loss in palliative care. Discussion: The case describes a 65-year-old man with acute myelogenous leukemia (AML) that has progressed despite treatment. No concerns are raised about communication challenges during conversations between the palliative care team and the patient in his quiet room. However, in the midst of a family meeting, shortly after discussing prognosis, the patient reports that he cannot hear what anyone is saying. Conclusion: We describe simple methods of screening patients for hearing loss, and suggest that practical approaches should be used universally in patient encounters. These include facing the patient, pitching one's voice low, using a pocket talker, and creating a hearing-friendly environment when planning a family or group meeting. PMID:25867966

  12. On the palliative care unit.

    PubMed

    Selwyn, Peter A

    2016-06-01

    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 PMID:27270255

  13. Palliative care: an evolving field in medicine.

    PubMed

    Eti, Serife

    2011-06-01

    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 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. This article discusses illness trajectories and prognostic estimates, prognostic tools, educating physicians and nurses in palliative care, research in palliative medicine, and palliative care in hospitals and the community. PMID:21628032

  14. Research sensitivities to palliative care patients.

    PubMed

    Addington-Hall, J

    2002-09-01

    This paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a 'palliative care patient' are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients' and families' experiences of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users' views. PMID:12296842

  15. Renal palliative care.

    PubMed

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

    2006-08-01

    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.

  16. Palliative Care for the Geriatric Anesthesiologist.

    PubMed

    Gustin, Allen N; Aslakson, Rebecca A

    2015-09-01

    Many seriously ill geriatric patients are at higher risk for perioperative morbidity and mortality, and incorporating proactive palliative care principles may be appropriate. Advanced care planning is a hallmark of palliative care in that it facilitates alignment of the goals of care between the patient and the health care team. When these goals conflict, perioperative dilemmas can occur. Anesthesiologists must overcome many cultural and religious barriers when managing the care of these patients. Palliative care is gaining ground in several perioperative populations where integration with certain patient groups has occurred. Geriatric anesthesiologists must be aware of how palliative care and hospice influence and enhance the care of elderly patients. PMID:26315640

  17. Impact of Palliative Care Consultation Service on Terminally Ill Cancer Patients: A 9-Year Observational Cohort Study in Taiwan.

    PubMed

    Lu, Ching-Yi; Shen, Wen-Chi; Kao, Chen-Yi; Wang, Hung-Ming; Tang, Shu-Chuan; Chin, Tsu-Ling; Chi, Chuan-Chuan; Yang, Jin-Mei; Chang, Chih-Wen; Lai, Ying-Fen; Yeh, Ya-Chi; Hung, Yu-Shin; Chou, Wen-Chi

    2016-03-01

    The palliative care consultation service (PCCS) that has been enthusiastically promoted in Taiwan since 2005 was designed to provide comprehensive end-of-life care for terminally ill patients with qualified interdisciplinary specialists in acute care ward setting. This study aims to evaluate the impact of PCCS on terminally ill cancer patients.A total of 10,594 terminal cancer patients who were referred to PCCS from a single medical center in Taiwan between 2006 and 2014 were enrolled. The percentages of patients' and their families' disease awareness, do-not-resuscitate (DNR) designation, refusal and acceptance of palliative care among terminally ill cancer patients were analyzed retrospectively.At the beginning of PCCS, the percentages of disease awareness among patients and their family were increased from 25.4% to 37.9% (P = 0.007) and from 61.2% to 84.7% between 2006 and 2014 (P = 0.001), respectively. Patients' disease awareness after PCCS referral between 2006 and 2014 was increased from 47.1% to 64.5% (P = 0.016). Family's awareness of diagnosis and prognosis after PCCS referral researched to a steady plateau, 94.1% to 97.8% in different year cohort (P = 0.34). The percentage of DNR designation rate at the beginning of PCCS (in 2006) was 15.5%, and the designation rate was increased annually and finally reached to 42.0% in 2014 (P = 0.004). The percentage of DNR consents after PCCS was also improved from 44.0% in 2006 up to 80.0% in 2014 (P = 0.005). PCCS refusal rate decreased gradually and dropped to 1.6% in 2014 (P = 0.005). The percentage of PCCS utilization was increased 5-fold during the 9-year period after the promotion of PCCSIn the program of PCCS promotion, an increasing trend of PCCS utilization, better patients' and their families' awareness of diagnosis and prognosis, more consent to DNR, more patients were discharged with stable condition at the end of PCCS and a decrease refusal rate of end-of-life palliative care

  18. Using a screening tool to improve timely referral of patients from acute oncology-haematology to palliative care services

    PubMed Central

    Begum, Akhtari

    2013-01-01

    This project was done at specialist cancer hospital in Qatar. At a haematology-oncology inpatient department most patients were not getting access to palliative care unless they were at the very end stages of life. Data collected from 2008-2011 showed significant numbers of patients were dying within one month of their transfer to palliative care. There was no standard measure to identify the prospective palliative care patients. A multidisciplinary team developed a Palliative care referral screening tool based on the National Cancer Care Network guideline. Retrospective medical record review done from January to April 2012 showed a mean of 68% of patients who scored more than five were not consulted, 32% of patients who scored more than seven were not transferred to palliative care and seven percent died without any referral. The team used various kinds of quality planning, analysis and improvement tools in the form of process mapping, value analysis, Fish Bone diagrams, stakeholders' analysis and communication, physician survey, “Pareto's principal” (80 / 20 rule, the law of vital few) and other data collection tools. The palliative care referral process was standardised by preparing and implementing an objective scoring tool based on international best practice. It changed the referral culture and helped manage the psychological barriers of patients, families and caregivers. Extensive orientation and education of all key stakeholders was implemented. Monthly auditing of patient records was carried out. The aim has been achieved, exceeded and sustained, and we reduced the percentage of patients who scored more than five without palliative consultation from a mean of 68% to 16% and those who scored more than seven without palliative care transfer from a mean of thirty two percent to three percent, after four months of the project's implementation. Standardising the referral process and creating an objective referral tool is needed to facilitate safe

  19. Drugs given by a syringe driver: a prospective multicentre survey of palliative care services in the UK.

    PubMed

    Wilcock, Andrew; Jacob, Jayin K; Charlesworth, Sarah; Harris, Elayne; Gibbs, Margaret; Allsop, Helen

    2006-10-01

    The use of a syringe driver to administer drugs by continuous subcutaneous infusion is common practice in the UK. Over time, drug combinations used in a syringe driver are likely to change and the aim of this survey was to obtain a more recent snapshot of practice. On four separate days, at two-week intervals, a questionnaire was completed for every syringe driver in use by 15 palliative care services. Of 336 syringe drivers, the majority contained either two or three drugs, but one-fifth contained only one drug. The median (range) volume of the infusions was 15 (9.5-48) mL, and duration of infusion was generally 24 hours. Only one combination was reported as visually incompatible, and there were 13 site reactions (4% of total). Laboratory physical and chemical compatibility data are available for less than half of the most frequently used combinations. PMID:17060264

  20. Paediatric Palliative Care: Theory to Practice

    PubMed Central

    Muckaden, Maryann; Dighe, Manjiri; Balaji, PD; Dhiliwal, Sunil; Tilve, Prajakta; Jadhav, Sunita; Goswami, Savita

    2011-01-01

    Paediatric palliative care is a holistic approach aimed at addressing the complex issues related to the care of children and families facing chronic life limiting illnesses. The needs of children are unique and often quite different from those of adults receiving palliative care. This review article outlines some of the salient features of paediatric palliative care which are relevant to all professionals caring for children with life limiting illnesses in their practice. PMID:21811373

  1. A palliative care initiative in Dokuz Eylul University Hospital.

    PubMed

    Mutafoglu, Kamer

    2011-04-01

    Turkey is among the countries with only "capacity building activity" in terms of palliative care development according to the mapping levels reported by the International Observatory on End of Life Care (http://www.eolc-observatory.net/global/pdf/world_map.pdf). Palliative care units are lacking even in major hospitals. Although some medical oncologists and pain specialists have been providing pain control and symptom relief to some extend, all these interventions remain a fragmented approach to care since there are no palliative care programs. Establishing palliative care services should be a priority in the development of comprehensive cancer care, particularly in a country where more than 60% of the cancer patients present with advanced stage disease. Like all the other university hospitals in the country, palliative care services have not been established so far in Dokuz Eylul University Hospital for several reasons although almost all the modern cancer treatment modalities have been provided to cancer patients. A group of health professionals have recently started a palliative care initiative in the hospital with an aim to raise awareness and to implement basic palliative care interventions to the current cancer care. This paper aims to tell the story of how this initiative get started and which step were taken so far.

  2. Edmonton, Canada: a regional model of palliative care development.

    PubMed

    Fainsinger, Robin L; Brenneis, Carleen; Fassbender, Konrad

    2007-05-01

    Palliative care developed unevenly in Edmonton in the 1980s and early 1990s. Health care budget cuts created an opportunity for innovative redesign of palliative care service delivery. This report describes the components that were developed to build an integrated comprehensive palliative care program, the use of common clinical assessments and outcome evaluation that has been key to establishing credibility and ongoing support. Our program has continued to develop and grow with an ongoing focus on the core areas of clinical care, education, and research. PMID:17482060

  3. Volunteer activity in specialist paediatric palliative care: a national survey

    PubMed Central

    Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L; Scott, Rosalind; Bravery, Ruth; Candy, Bridget

    2015-01-01

    Objective To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. Method Cross-sectional survey using a web-based questionnaire. Setting UK specialist paediatric palliative care services. Participants Volunteer managers/coordinators from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total). Main outcomes Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers’ professional skills and volunteer activities by setting. Results A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16–19 years in 23 services and 23–35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings. Conclusions This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers’ contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers’ roles. PMID:24644170

  4. Music therapy in palliative care.

    PubMed Central

    Munro, S.; Mount, B.

    1978-01-01

    Initial observations regarding the use of music therapy at one hospital in the palliative care of patients with advanced malignant disease are presented. In the hands of a trained music therapist, music has proven to be a potent tool for improving the quality of life. The diversity of its potential is particularly suited to the deversity of the challenges - physical, psychosocial and spiritual - that these patients present. Images FIG. 1 PMID:84704

  5. Palliative Care in Musculoskeletal Oncology.

    PubMed

    Gulia, Ashish; Byregowda, Suman; Panda, Pankaj Kumar

    2016-01-01

    Patients in advanced stages of illness trajectories with local and widespread musculoskeletal incurable malignancies, either treatment naive or having recurrence are referred to the palliative care clinic to relieve various disease-related symptoms and to improve the quality of life. Palliative care is a specialized medicine that offers treatment to the disease-specific symptoms, places emphasis on the psychosocial and spiritual aspects of life and help the patients and their family to cope with advance stage cancer in a stronger and reasonable way. The overall outcome of musculoskeletal malignancies has improved with the advent of multidisciplinary management. Even then these tumors do relapse and leads to organ failures and disease-specific deaths in children and young adults in productive age group thus requiring an integrated approach to improve the supportive/palliative care needs in end-stage disease. In this article, we would like to discuss the spectrum of presentation of advanced musculoskeletal malignancies, skeletal metastasis, and their management. PMID:27559251

  6. Palliative Care in Musculoskeletal Oncology

    PubMed Central

    Gulia, Ashish; Byregowda, Suman; Panda, Pankaj Kumar

    2016-01-01

    Patients in advanced stages of illness trajectories with local and widespread musculoskeletal incurable malignancies, either treatment naive or having recurrence are referred to the palliative care clinic to relieve various disease-related symptoms and to improve the quality of life. Palliative care is a specialized medicine that offers treatment to the disease-specific symptoms, places emphasis on the psychosocial and spiritual aspects of life and help the patients and their family to cope with advance stage cancer in a stronger and reasonable way. The overall outcome of musculoskeletal malignancies has improved with the advent of multidisciplinary management. Even then these tumors do relapse and leads to organ failures and disease-specific deaths in children and young adults in productive age group thus requiring an integrated approach to improve the supportive/palliative care needs in end-stage disease. In this article, we would like to discuss the spectrum of presentation of advanced musculoskeletal malignancies, skeletal metastasis, and their management. PMID:27559251

  7. Palliative wound care: principles of care.

    PubMed

    Dale, Barbara; Emmons, Kevin R

    2014-01-01

    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.

  8. Public health imperative of the 21st century: innovations in palliative care systems, services, and supports to improve health and well-being of older americans.

    PubMed

    Morrissey, Mary Beth; Herr, Keela; Levine, Carol

    2015-04-01

    A primary aim of federal aging and health policy must be promoting innovations in palliative care systems, services, and supports that improve the experience of growing old in America. Older adults must contend today with increasing burden over the life course often as the result of life-limiting chronic pain and chronic illnesses as well as social and economic factors beyond their control. These burdens are frequently shared with unpaid family caregivers who provide significant uncompensated medical care and social support to their loved ones. Enjoyment of the highest attainable standard of physical and mental health, recognized as a fundamental human right under international law, remains a goal for all older adults and encompasses the right to palliative care. For many older Americans, especially vulnerable subgroups who face health and pain disparities, however, this goal remains elusive. A public health strategy for implementing palliative care policy interventions will help to build age-friendly environments, assure the availability and accessibility of palliative systems of care, essential medicines, and an adequate generalist-level workforce, and sustain diffusion of innovation across all levels of health and social provision. The 2015 White House Conference on Aging must make these realignments a policy priority in order to foster social and economic development for all older Americans.

  9. Public health imperative of the 21st century: innovations in palliative care systems, services, and supports to improve health and well-being of older americans.

    PubMed

    Morrissey, Mary Beth; Herr, Keela; Levine, Carol

    2015-04-01

    A primary aim of federal aging and health policy must be promoting innovations in palliative care systems, services, and supports that improve the experience of growing old in America. Older adults must contend today with increasing burden over the life course often as the result of life-limiting chronic pain and chronic illnesses as well as social and economic factors beyond their control. These burdens are frequently shared with unpaid family caregivers who provide significant uncompensated medical care and social support to their loved ones. Enjoyment of the highest attainable standard of physical and mental health, recognized as a fundamental human right under international law, remains a goal for all older adults and encompasses the right to palliative care. For many older Americans, especially vulnerable subgroups who face health and pain disparities, however, this goal remains elusive. A public health strategy for implementing palliative care policy interventions will help to build age-friendly environments, assure the availability and accessibility of palliative systems of care, essential medicines, and an adequate generalist-level workforce, and sustain diffusion of innovation across all levels of health and social provision. The 2015 White House Conference on Aging must make these realignments a policy priority in order to foster social and economic development for all older Americans. PMID:26035600

  10. Surgical palliative care in Haiti.

    PubMed

    Huffman, Joan L

    2012-03-01

    Palliative care in itself has many challenges; these challenges are compounded exponentially when placed in the setting of a mass casualty event, such as the 2010 Haiti earthquake. Haiti itself was an austere environment with very little infrastructure before the disaster. US surgeons, intensivists, and nurses worked hand in hand with other international providers and Haitian volunteers to provide the best care for the many. Improvisation and teamwork as well as respect for the Haitian caregivers were crucial to their successes. Sisyphean trials lie ahead. Haiti and its people must not be forgotten.

  11. Surgical palliative care in Haiti.

    PubMed

    Huffman, Joan L

    2011-04-01

    Palliative care in itself has many challenges; these challenges are compounded exponentially when placed in the setting of a mass casualty event, such as the 2010 Haiti earthquake. Haiti itself was an austere environment with very little infrastructure before the disaster. US surgeons, intensivists, and nurses worked hand in hand with other international providers and Haitian volunteers to provide the best care for the many. Improvisation and teamwork as well as respect for the Haitian caregivers were crucial to their successes. Sisyphean trials lie ahead. Haiti and its people must not be forgotten.

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

    PubMed

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

    2016-01-01

    One-third of the global population is aged under 20 years. For children with life-limiting conditions, palliative care services are required. However, despite 80% of global need occurring in low- and middle-income countries (LMICs), the majority of children's palliative care (CPC) is provided in high-income countries. This paper reviews the status of CPC services in LMICs--highlighting examples of best practice among service models in Malawi, Indonesia and Belarus--before reviewing the status of the extant research in this field. It concludes that while much has been achieved in palliative care for adults, less attention has been devoted to the education, clinical practice, funding and research needed to ensure children and young people receive the palliative care they need.

  13. Comparing palliative care provision in India and the UK.

    PubMed

    Love, Barbara; Cook, Audra

    The Prince & Princess of Wales Hospice in Glasgow is committed to developing culturally competent, sensitive services to meet the needs of local ethnic minority communities. The clinical nurse specialist for widening access travelled to India, funded by a travel scholarship from the Florence Nightingale Foundation. The main rationale for this visit was to observe and compare palliative care practice in India in community, hospice and hospital settings with the current service provision by the hospice/hospital palliative care teams in Glasgow. A second focus was to study the cultural differences and potential challenges of providing palliative care to a diverse Indian population from multi-faith communities and different socio-economic classes. Throughout the visit the barriers to accessing palliative care services in India were observed as well as cultural norms that might impact on clinical practice in the UK. PMID:26500126

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

    PubMed

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

    2016-01-01

    One-third of the global population is aged under 20 years. For children with life-limiting conditions, palliative care services are required. However, despite 80% of global need occurring in low- and middle-income countries (LMICs), the majority of children's palliative care (CPC) is provided in high-income countries. This paper reviews the status of CPC services in LMICs--highlighting examples of best practice among service models in Malawi, Indonesia and Belarus--before reviewing the status of the extant research in this field. It concludes that while much has been achieved in palliative care for adults, less attention has been devoted to the education, clinical practice, funding and research needed to ensure children and young people receive the palliative care they need. PMID:26369576

  15. Working with a palliative care team.

    PubMed

    Wiebe, Lauren A; Von Roenn, Jamie H

    2010-01-01

    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.

  16. Palliative dental care- a boon for debilitating.

    PubMed

    Mulk, Bhavana Sujana; Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar

    2014-06-01

    World Health Organization defines "palliative care" as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enlightens the importance of dentist role in palliative team. PMID:25121074

  17. [Use of music in palliative care].

    PubMed

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

    2011-12-01

    allow the diversity of objectives in treating patients such as reducing anxiety and stress, relaxation, pain control, reducing confusion spiritual, emotional expression, experience, self-awareness, encourage creative expression, causing mood swings - emotional, cognitive and behavioral, inducing the patient's imagination, enabling patient's chronological classification of life experiences, and the elaboration of unresolved pain, sorrow or errors. Adequate selection and use of musical techniques in palliative care in the service of achieving the best possible quality of life for patients at the end of life.

  18. [Use of music in palliative care].

    PubMed

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

    2011-12-01

    allow the diversity of objectives in treating patients such as reducing anxiety and stress, relaxation, pain control, reducing confusion spiritual, emotional expression, experience, self-awareness, encourage creative expression, causing mood swings - emotional, cognitive and behavioral, inducing the patient's imagination, enabling patient's chronological classification of life experiences, and the elaboration of unresolved pain, sorrow or errors. Adequate selection and use of musical techniques in palliative care in the service of achieving the best possible quality of life for patients at the end of life. PMID:22994012

  19. Palliative Dental Care- A Boon for Debilitating

    PubMed Central

    Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar

    2014-01-01

    World Health Organization defines “palliative care” as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enlightens the importance of dentist role in palliative team. PMID:25121074

  20. Palliative care in chronic obstructive pulmonary disease.

    PubMed

    Lilly, Evan J; Senderovich, Helen

    2016-10-01

    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.

  1. Palliative care in chronic obstructive pulmonary disease.

    PubMed

    Lilly, Evan J; Senderovich, Helen

    2016-10-01

    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. PMID:27481751

  2. Palliative Care and legislation around dying.

    PubMed

    Baroness Finlay of Llandaff; Lancaster, Harriet

    2015-01-01

    Around the world forty million people a year need palliative care yet more than four in five of these have no access to basic analgesia with morphine. 6% of those dying with no pain relief are children. Those left behind carry with them the memory of the death and it can colour their future lives, making good palliative care an urgent public health issue around the world. Everyone providing healthcare needs core training in palliative care, including the fundamentals of pain and symptom relief. Governments must urgently address barriers to morphine availability and educators of health care professionals must eliminate myths and phobias, and teach good end of life care. PMID:26867342

  3. Integrating palliative care: a postmodern perspective.

    PubMed

    Zimmermann, Camilla; Wennberg, Richard

    2006-01-01

    Hospice and palliative care philosophy is becoming increasingly incorporated into medical practice, education, and research. However, this process of integration may be hindered by continued adherence to several perceived conceptual dichotomies: natural and medicalized death, research and clinical care, and acceptance and denial of dying. These dichotomies were perhaps essential for the initial development of palliative care but could undermine the continuing evolution of care for the terminally ill. In this article, the authors deconstruct these dichotomies and advocate for a fully integrated model of palliative care.

  4. [Development and prospects of hospice palliative care in Taiwan].

    PubMed

    Chao, Co-Shi Chantal

    2009-02-01

    Hospice palliative care is an approach to healthcare that integrates high technology and highly humanized care. Service, education, and policymaking are the three critical areas of focus in the development of this specialty of care. Under hospice palliative care, holistic, high quality services covering in-patient care, homecare, and shared care are provided for terminally ill patients and their families. Healthcare team members must be taught not only knowledge but also skills and attitudes that reflect their responsibilities and level of competence. General public education is important also. Regulations and relevant policies have been implemented by Department of Health (DOH) since 1995. The Natural Death Act was legislated in 2000. Members of Healthcare team concerned regarding the proper development of hospice palliative care in Taiwan have organized to, "do the right things and do things right." The future vision of hospice palliative care embraces: 1. Expanding services to other life threatening illness such as terminal liver, renal, respiratory and heart diseases; 2. Securing appropriate DOH supervision and funds; 3. Developing a care model appropriate to the needs of Taiwan's culture; 4. Expanding the limits of service models; 5. Integrating services and enhancing expertise among those charged with delivering services, conducting research, and education; 6. Integration into the long term care system and enhancing quality. PMID:19221994

  5. Growing Pains: Palliative Care Making Gains

    Cancer.gov

    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. Training Advanced Practice Palliative Care Nurses.

    ERIC Educational Resources Information Center

    Sherman, Deborah Witt

    1999-01-01

    Describes the role and responsibilities of advanced-practice nurses in palliative care and nursing's initiative in promoting high-quality care through the educational preparation of these nurses. (JOW)

  7. Does referral to specialist paediatric palliative care services reduce hospital admissions in oncology patients at the end of life?

    PubMed Central

    Fraser, L K; van Laar, M; Miller, M; Aldridge, J; McKinney, P A; Parslow, R C; Feltbower, R G

    2013-01-01

    Background: Despite advances in the treatment of childhood cancer, some children continue to die from their disease. This study aimed to assess the impact of specialist paediatric palliative care services (SPPCSs) on the number of hospital admissions in children who subsequently died from cancer in Yorkshire, UK. Methods: An extract of patients aged 0–19 years from the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP) diagnosed from 1990 to 2009 were linked to inpatient hospital episodes data and a SPPCS database. Deaths were included if they occurred before 31 August 2011. Differences in hospital admission patterns were assessed using negative binomial regression and presented as incidence rate ratios (IRRs). Results: Of 2508 children on the YSRCCYP, 657 (26%) had died by the censoring date. A total of 211 children had been referred to the local SPPCS, of whom 182 (86%) had subsequently died. Referral to SPPCS was associated with a significant reduction in the rate of planned hospital admissions (IRR=0.60, 95% CI 0.43–0.85). Central nervous system tumours showed significant decreases for all planned and emergency admissions compared with all other diagnostic groups. Conclusion: Referral to SPPCS significantly reduced the number of planned hospital admissions for children and young people with cancer before their death, which are often integral to paediatric oncology treatment regimens. Overall, our findings show that SPPCS have a role in reducing hospital admissions during end of life care of paediatric cancer patients with potential personal, social and economic benefits. PMID:23449361

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

    PubMed Central

    Victoria, Kitty; Patel, Sarita

    2016-01-01

    Background: Studies have shown that over 50% of end-of-life discussions take place for the first time in the hospital and that terminally ill patients often have unrealistic views regarding the possible scope of treatment. The Palliative Care information Act (PCIA) was passed in an attempt to address the lack of access for terminally ill patients to palliative care services. A multi-database systematic review was performed on published studies from 2010 to present, and there were none found measuring the effectiveness of the PCIA. Objectives: We aimed to study the effect of the PCIA on access to palliative care services. Methods: We conducted a retrospective chart review of all terminally ill patients who died at Kingsbrook Jewish Medical Center from January 2010 to August 2013 in relation to passing of the PCIA. Results: Prelaw (prior to the law passing), 12.3% of the terminal patients received palliative care consults, 25% during the transition period (time between passing of law and when it came into effect) and 37.7% postlaw (after coming into effect) (P < 0.001). Conclusions: Legislation can have a significant effect on terminally ill patient's access to palliative care services and can change the culture of a hospital to be more pro-palliative for the appropriate populations. PMID:27803564

  9. Introducing reflective narratives into palliative care home care education.

    PubMed

    Wessel, Elizabeth M; Garon, Maryanne

    2005-08-01

    The purpose of the research project was to determine the impact of palliative care education and the writing of a reflective narrative on nurses' self-awareness of their attitudes toward death and care of the dying. Findings support integration of narrative reflection into palliative care education as an effective teaching strategy.Only qualitative findings of a larger study are presented; quantitative results have been published in the Journal of Hospice & Palliative Nursing (Home care and hospice nurses' attitudes toward death and caring for the dying: effects of palliative care education. 2005;7[4], 212-218).

  10. Medical use of marijuana in palliative care.

    PubMed

    Johannigman, Suzanne; Eschiti, Valerie

    2013-08-01

    Marijuana has been documented to provide relief to patients in palliative care. However, healthcare providers should use caution when discussing medical marijuana use with patients. This article features a case study that reveals the complexity of medical marijuana use. For oncology nurses to offer high-quality care, examining the pros and cons of medical marijuana use in the palliative care setting is important. PMID:23899972

  11. [Specialized palliative home care: An interprofessional network].

    PubMed

    Alt-Epping, Bernd; Nauck, F

    2015-04-01

    Specialized palliative home care ("Spezialisierte Ambulante Palliativversorgung", SAPV) denotes an intensified, multi-professional support system at home for patients suffering from complex symptoms and needs associated with severe and advanced illness. In 2007, a change in legislation guaranteed SAPV to any patient (covered by public health insurance) in need of specialized palliative care. Despite further specifications by federal institutions, SAPV has been transferred into German clinical practice in a very regionally diverse manner. This contribution describes the legislative and conceptual framework of SAPV, the financial and clinical aspects, and its future perspectives for the comprehensive palliative care of patients with complex demands.

  12. Palliative Care in Rural Minnesota: Findings from Stratis Health's Minnesota Rural Palliative Care Initiative.

    PubMed

    McKinley, Deb; Shearer, Janelle; Weng, Karla

    2016-01-01

    Palliative care, which involves managing symptoms, controlling pain and addressing stress caused by a chronic or terminal illness, has been shown to keep patients out of the hospital and allow them to stay home and live more comfortably with their illness. Typically, it is provided by an interdisciplinary team led by a physician trained in palliative medicine. Rural areas have not always had access to such specialists. Yet, today, rural health care organizations are finding ways to create palliative care programs that meet the needs of their chronically ill and aging populations. This article describes a six-year initiative led by Stratis Health to advance palliative care in rural Minnesota. It highlights the work of FirstLight Health System in Mora and describes Stratis Health's Rural Palliative Care Measurement Pilot Project, an effort to develop and test measures for evaluating rural palliative care programs.

  13. New dimensions in palliative care: a palliative approach to neurodegenerative diseases and final illness in older people.

    PubMed

    Kristjanson, Linda J; Toye, Christine; Dawson, Sky

    2003-09-15

    A palliative care approach has much to offer people in the advanced stages of neurodegenerative diseases, as well as elderly people dying from diseases other than cancer. Palliative care can be part of the treatment repertoire of any health worker, supported by intermittent consultation or referral to specialist palliative care services (eg, for management of neuropathic pain). A palliative care approach encourages a focus on pain and symptom management, and prompts more open communication about end-of-life issues. This approach recruits as necessary the expertise of specialists and multidisciplinary teams to encourage a flexible, responsive service. Home carers and healthcare providers require education to ensure a palliative approach that meets the physical, psychological, spiritual and social challenges facing patients and their families, and enhances dignity and quality of life.

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

    PubMed

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

    2004-01-01

    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 January 2002.

  15. An Ecological Understanding of Caregiver Experiences in Palliative Care.

    PubMed

    Chandran, Devyani; Corbin, J Hope; Shillam, Casey

    2016-01-01

    Palliative care is specialized health care to improve quality of life for patients with serious illness and their families through prevention and relief of suffering. A Palliative Care Institute was held in western Washington to capture community voices about diverse needs, strengths, and opportunities for improvement of palliative care. Researchers employed qualitative methods to obtain thematic data, provide real-time analysis, and engage in a multivoting technique to reflect stakeholder interest in individual themes and prioritize larger group interests. Bronfenbrenner's ecological systems framework was used to explore caregiver experiences. Within the microsystem, caregivers reported difficulties in interactions with medical providers as a key challenge. Within the mesosysytem, interactions between patients and medical providers and the impact on caregivers were explored. Within the exosystem, caregivers reported lack of control over the schedules of personal care staff. Macrosystem influences included impact of local culture on the development of palliative care services. Chronosystem influences include de-medicalization of childbirth and its impact on perceptions of palliative care. Implications include the need for social workers to be proactive in fostering trust and effective communication between care providers and caregivers, and the demand for health care provider training in communication with patients and families. PMID:27143579

  16. Find a Hospice or Palliative Care Provider

    MedlinePlus

    ... use the fields below to enter your search criteria. Zip Code: Radius: 10 20 50 100 miles Provider Name: Organization Type: Please select Hospice Multi-Location Hospice Provider Palliative Care Provider or Sitemap ...

  17. The Island Hospice model of palliative care.

    PubMed

    Khumalo, Thembelihle; Maasdorp, Valerie

    2016-01-01

    There has been a substantial increase in cancer detections in Africa over years, and it has also been noted that higher number of individuals are affected by the later stages of cancer that lead to death. When it comes to cancer care, Zimbabwe is no exception with its ongoing palliative care related research, though still in its infancy. The need for advanced and more accessible palliative care to assist the vulnerable has been intensified by this increase in cancer prevalence. Island Hospice, which is a centre of excellence in palliative care has varying elements of the models that it employs to engage those most in need of palliative assistance, especially children and financially-challenged individuals. PMID:27563349

  18. The Island Hospice model of palliative care

    PubMed Central

    Khumalo, Thembelihle; Maasdorp, Valerie

    2016-01-01

    There has been a substantial increase in cancer detections in Africa over years, and it has also been noted that higher number of individuals are affected by the later stages of cancer that lead to death. When it comes to cancer care, Zimbabwe is no exception with its ongoing palliative care related research, though still in its infancy. The need for advanced and more accessible palliative care to assist the vulnerable has been intensified by this increase in cancer prevalence. Island Hospice, which is a centre of excellence in palliative care has varying elements of the models that it employs to engage those most in need of palliative assistance, especially children and financially-challenged individuals. PMID:27563349

  19. Impact of supervised drug consumption services on access to and engagement with care at a palliative and supportive care facility for people living with HIV/AIDS: a qualitative study

    PubMed Central

    McNeil, Ryan; Dilley, Laura B; Guirguis-Younger, Manal; Hwang, Stephen W; Small, Will

    2014-01-01

    Introduction Improvements in the availability and effectiveness of highly active antiretroviral therapy (HAART) have prolonged the lives of people living with HIV/AIDS. However, mortality rates have remained high among populations that encounter barriers to accessing and adhering to HAART, notably people who use drugs. This population consequently has a high burden of illness and complex palliative and supportive care needs, but is often unable to access these services due to anti-drug policies and discrimination. In Vancouver, Canada, the Dr. Peter Centre (DPC), which operates a 24-bed residential HIV/AIDS care facility, has sought to improve access to palliative and supportive care services by adopting a comprehensive harm reduction strategy, including supervised injection services. We undertook this study to explore how the integration of comprehensive harm reduction services into this setting shapes access to and engagement with care. Methods Qualitative interviews were conducted with 13 DPC residents between November 2010 and August 2011. Interviews made use of a semistructured interview guide which facilitated discussion regarding how the DPC Residence's model of care (a) shaped healthcare access, (b) influenced healthcare interactions and (c) impacted drug use practices and overall health. Interview transcripts were analysed thematically. Results Participant accounts highlight how the harm reduction policy altered the structural-environmental context of healthcare services and thus mediated access to palliative and supportive care services. Furthermore, this approach fostered an atmosphere in which drug use could be discussed without the risk of punitive action, and thus increased openness between residents and staff. Finally, participants reported that the environmental supports provided by the DPC Residence decreased drug-related risks and improved health outcomes, including HAART adherence and survival. Conclusions This study highlights how adopting

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

    ERIC Educational Resources Information Center

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

    2010-01-01

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

  1. Integrating palliative care with usual care of diabetic foot wounds.

    PubMed

    Dunning, Trisha

    2016-01-01

    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.

  2. Pediatric Palliative Care in the Intensive Care Unit.

    PubMed

    Madden, Kevin; Wolfe, Joanne; Collura, Christopher

    2015-09-01

    The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make prognostication extremely difficult. The uncertainty of prognostication and the available medical technologies make both the neonatal intensive care unit and the pediatric intensive care unit locations where many children will receive Pediatric Palliative Care. Health care providers in the neonatal intensive care unit and pediatric intensive care unit should integrate fundamental Pediatric Palliative Care principles into their everyday practice. PMID:26333755

  3. The role of palliative care in trauma.

    PubMed

    Owens, Darrell

    2012-01-01

    Trauma remains a leading cause of morbidity and mortality in the United States. Despite the aggressive and heroic nature of trauma care, including trauma surgery, 10% to 20% of patients admitted to trauma intensive care units die. As the population continues to age, it is predicted that by 2050, approximately 40% of those experiencing traumatic injury will be older than 65 years. For multiple reasons, people in this age group who experience trauma are at greater risk for death. Palliative care is the specialty of health care that provides care for patients with serious, life-threatening, or life-limiting illness or injury, regardless of the stage of disease or treatment. The goal of palliative care is to reduce or alleviate suffering through expert pain and symptom management, as well as assistance with decision making. The integration of palliative and trauma care can assist and support patients and families through stressful, often life-changing times, regardless of the final outcome.

  4. Medicare Care Choices Model Enables Concurrent Palliative and Curative Care.

    PubMed

    2015-01-01

    On July 20, 2015, the federal Centers for Medicare & Medicaid Services (CMS) announced hospices that have been selected to participate in the Medicare Care Choices Model. Fewer than half of the Medicare beneficiaries use hospice care for which they are eligible. Current Medicare regulations preclude concurrent palliative and curative care. Under the Medicare Choices Model, dually eligible Medicare beneficiaries may elect to receive supportive care services typically provided by hospice while continuing to receive curative services. This report describes how CMS has expanded the model from an originally anticipated 30 Medicare-certified hospices to over 140 Medicare-certified hospices and extended the duration of the model from 3 to 5 years. Medicare-certified hospice programs that will participate in the model are listed.

  5. Community pharmacists: a forgotten resource for palliative care.

    PubMed

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

    2013-12-01

    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. PMID:24950524

  6. Family as the primary caregiver: palliative care in the Golan Heights.

    PubMed

    Richman, Elon; Ringel, Amit; Kreniske, Jonah Susser; Safadi, Wajdi

    2015-01-01

    Palliative care is recognised by the WHO as an essential component of care for the seriously ill. Geographically isolated and historically underserved communities, particularly from ethnic minority groups, face obstacles in obtaining adequate palliative care. This case involves the care of a 26-year-old Druze man suffering from a terminal cancer in his Golan Heights village. Local physicians were able to train the patient's father in a palliative care capacity. In the effort of capacity building, the physician and palliative care team also aided the aggrieved family in the process of coping. Robust support networks, both at state and community levels, facilitated the care provided. In showcasing the role of the national and local safety net in activating and building community resources to address a dearth of palliative care services in disadvantaged regions, this case models a potentially effective community-based approach to palliative care for patients from underserved populations. PMID:25858919

  7. [Neonatal palliative care and culture].

    PubMed

    Bétrémieux, P; Mannoni, C

    2013-09-01

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

  8. Pulmonary medicine and palliative care.

    PubMed

    Tucakovic, M; Bascom, R; Bascom, P B

    2001-04-01

    Gynaecological malignancies affect the respiratory system both directly and indirectly. Malignant pleural effusion is a poor prognostic factor: management options include repeated thoracentesis, chemical pleurodesis, symptomatic relief of dyspnoea with oxygen and morphine, and external drainage. Parenchymal metastases are typically multifocal and respond to chemotherapy, with a limited role for pulmonary metastatectomy. Pulmonary tumour embolism is frequently associated with lymphangitic carcinomatosis, and is most common in choriocarcinoma. Thromboembolic disease, associated with the hypercoagulable state of cancer, is treated with anticoagulation. Inferior vena cava filter placement is indicated when anticoagulation cannot be given, or when emboli recur despite adequate anticoagulation. Palliative care has a major role for respiratory symptoms of gynaecological malignancies. Treatable causes of dyspnoea include bronchospasm, fluid overload and retained secretions. Opiates are effective at relieving dyspnoea associated with effusions, metatases, and lymphangitic tumour spread. Non-pharmacological therapies include energy conservation, home redesign, and dyspnoea relief strategies, including pursed lip breathing, relaxation, oxygen, circulation of air with a fan, and attention to spiritual suffering. Identification and treatment of gastroesophageal reflux, sinusitis, and asthma can improve many patients' coughs. Chest wall pain responds to local radiotherapy, nerve blocks or systemic analgesia. Case examples illustrate ways to address quality of life issues. PMID:11358403

  9. [Early Integration of Palliative Care into Standard Oncology Care -  Benefits, Limitations, Barriers and Types of Palliative Care].

    PubMed

    Sochor, M; Sláma, O; Loučka, M

    2015-01-01

    Patients with advanced cancer experience a significant number of physical symptoms and psychological distress, which worsen their quality of life (QOL). Palliative care is oriented to prevent and relieve suffering and promote QOL of patients with advanced cancer. In oncology, the role of palliative care is traditionally perceived to be the treatment after the antineoplastic therapy is finished. A concept of early integration of palliative care into standard oncology practice has been recently introduced. There is a lot of data supporting this concept of parallel application of both oncology care and palliative care. Early palliative care has been shown to provide benefits in QOL, mood, symptoms, health care utilization and survival. In this review, we summarize published data about benefits and difficulties of early palliative care. We also discuss the model of general and specialized palliative care integrated into oncological practice, their differences and consequences.

  10. Exploring the leadership role of the clinical nurse specialist on an inpatient palliative care consulting team.

    PubMed

    Stilos, Kalli; Daines, Pat

    2013-03-01

    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. Young adult palliative care: challenges and opportunities.

    PubMed

    Clark, Jennifer K; Fasciano, Karen

    2015-02-01

    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. PMID:24198063

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

    PubMed

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

    2010-02-01

    Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here. PMID:19922199

  13. [The palliative treatment plan as basis for informed decisions in palliative or emergency care].

    PubMed

    Lederer, Wolfgang; Feichtner, Angelika; Medicus, Elisabeth

    2011-11-01

    Acute vital crisis in end-of-life situations may result in a person being hospitalized and thus, expelled from his intimate environment, which aggravates the continuity of care. This entails a heavy burden for patients and necessitates an emergency medical services (EMS) call without recognizable benefit in many cases. Crisis episodes frequently mark the beginning of the dying process. Advance care planning or end-of-life care in elderly patients can help prevent such situations and ensure high contentment of patients, families and caregivers. Frequently, the question arises whether the burden arising from further hospitalization or from certain medical treatment options is reasonably balanced by the potential benefits of the steps taken. In such comprehensive care settings a custom-tailored palliative treatment plan may serve as an instrument for advance care planning. A palliative treatment plan set up by a physician together with a caregiver helps ensure that acute problems can be solved quickly and satisfactorily in the patient's customary surroundings. If EMS assistance is still needed, the emergency physician has written information on the patient's situation and can act quickly to meet the patient's immediate needs. This also means that EMS personnel must be properly trained in providing palliative care. In this way the palliative treatment plan can help caregivers continue to care for patients in their intimate surroundings.

  14. A palliative care specific spiritual assessment: how this story evolved.

    PubMed

    Galchutt, Paul

    2013-01-01

    This article reflects a project to create, refine, and use a palliative care specific spiritual assessment, with the intent to implement its use for both an inpatient Palliative Consult Service (PCS) and a Spiritual Health Service (SHS) team. Extensive meetings with these services to confirm a shared understanding of the use of this spiritual assessment to facilitate communication with PCS through consistent language about the patient's story, suffering, spirit, and sense-making. Following a pilot phase of using this palliative care spiritual assessment, five presentations were shared with the SHS team to explore using this assessment. Although the SHS team decided not to use its content, these presentations spurred dialogue toward what was to become a SHS standardized documentation process, eventually called data, intervention, outcome, plan (DIOP).

  15. Integrating palliative care into the trajectory of cancer care.

    PubMed

    Hui, David; Bruera, Eduardo

    2016-03-01

    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.

  16. Integrating palliative care into the trajectory of cancer care

    PubMed Central

    Hui, David; Bruera, Eduardo

    2016-01-01

    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, 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 end by discussing how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available. PMID:26598947

  17. Does the use of specialist palliative care services modify the effect of socioeconomic status on place of death? A systematic review

    PubMed Central

    Chen, Hong; Nicolson, Donald J; Macleod, Una; Allgar, Victoria; Dalgliesh, Christopher; Johnson, Miriam

    2015-01-01

    Background: Cancer patients in lower socioeconomic groups are significantly less likely to die at home and experience more barriers to access to palliative care. It is unclear whether receiving palliative care may mediate the effect of socioeconomic status on place of death. Aim: This review examines whether and how use of specialist palliative care may modify the effect of socioeconomic status on place of death. Design: A systematic review was conducted. Eligible papers were selected and the quality appraised by two independent reviewers. Data were synthesised using a narrative approach. Data sources: MEDLINE, Embase, CINAHL, PsycINFO and Web of Knowledge were searched (1997–2013). Bibliographies were scanned and experts contacted. Papers were included if they reported the effect of both socioeconomic status and use of specialist palliative care on place of death for adult cancer patients. Results: Nine studies were included. All study subjects had received specialist palliative care. With regard to place of death, socioeconomic status was found to have (1) no effect in seven studies and (2) an effect in one study. Furthermore, one study found that the effect of socioeconomic status on place of death was only significant when patients received standard specialist palliative care. When patients received more intense care adapted to their needs, the effect of socioeconomic status on place of death was no longer seen. Conclusion: There is some evidence to suggest that use of specialist palliative care may modify the effect of socioeconomic status on place of death. PMID:26330454

  18. Few Hospital Palliative Care Programs Meet National Staffing Recommendations.

    PubMed

    Spetz, Joanne; Dudley, Nancy; Trupin, Laura; Rogers, Maggie; Meier, Diane E; Dumanovsky, Tamara

    2016-09-01

    The predominant model for palliative care delivery, outside of hospice care, is the hospital-based consultative team. Although a majority of US hospitals offer palliative care services, there has been little research on the staffing of their program teams and whether those teams meet national guidelines, such as the Joint Commission's standard of including at least one physician, an advanced practice or other registered nurse, a social worker, and a chaplain. Data from the 2012-13 annual surveys of the National Palliative Care Registry indicate that only 25 percent of participating programs met that standard based on funded positions, and even when unfunded positions were included, only 39 percent of programs met the standard. Larger palliative care programs were more likely than smaller ones to include a funded physician position, while smaller programs were more reliant upon advanced practice and registered nurses. To meet current and future palliative care needs, expanded and enhanced education, as well as supportive financing mechanisms for consultations, are needed. PMID:27605652

  19. Few Hospital Palliative Care Programs Meet National Staffing Recommendations.

    PubMed

    Spetz, Joanne; Dudley, Nancy; Trupin, Laura; Rogers, Maggie; Meier, Diane E; Dumanovsky, Tamara

    2016-09-01

    The predominant model for palliative care delivery, outside of hospice care, is the hospital-based consultative team. Although a majority of US hospitals offer palliative care services, there has been little research on the staffing of their program teams and whether those teams meet national guidelines, such as the Joint Commission's standard of including at least one physician, an advanced practice or other registered nurse, a social worker, and a chaplain. Data from the 2012-13 annual surveys of the National Palliative Care Registry indicate that only 25 percent of participating programs met that standard based on funded positions, and even when unfunded positions were included, only 39 percent of programs met the standard. Larger palliative care programs were more likely than smaller ones to include a funded physician position, while smaller programs were more reliant upon advanced practice and registered nurses. To meet current and future palliative care needs, expanded and enhanced education, as well as supportive financing mechanisms for consultations, are needed.

  20. Perceptions of Palliative Care Among Hematologic Malignancy Specialists: A Mixed-Methods Study

    PubMed Central

    LeBlanc, Thomas W.; O'Donnell, Jonathan D.; Crowley-Matoka, Megan; Rabow, Michael W.; Smith, Cardinale B.; White, Douglas B.; Tiver, Greer A.; Arnold, Robert M.; Schenker, Yael

    2015-01-01

    Purpose: Patients with hematologic malignancies are less likely to receive specialist palliative care services than patients with solid tumors. Reasons for this difference are poorly understood. Methods: This was a multisite, mixed-methods study to understand and contrast perceptions of palliative care among hematologic and solid tumor oncologists using surveys assessing referral practices and in-depth semistructured interviews exploring views of palliative care. We compared referral patterns using standard statistical methods. We analyzed qualitative interview data using constant comparative methods to explore reasons for observed differences. Results: Among 66 interviewees, 23 oncologists cared exclusively for patients with hematologic malignancies; 43 treated only patients with solid tumors. Seven (30%) of 23 hematologic oncologists reported never referring to palliative care; all solid tumor oncologists had previously referred. In qualitative analyses, most hematologic oncologists viewed palliative care as end-of-life care, whereas most solid tumor oncologists viewed palliative care as a subspecialty that could assist with complex patient cases. Solid tumor oncologists emphasized practical barriers to palliative care referral, such as appointment availability and reimbursement issues. Hematologic oncologists emphasized philosophic concerns about palliative care referrals, including different treatment goals, responsiveness to chemotherapy, and preference for controlling even palliative aspects of patient care. Conclusion: Most hematologic oncologists view palliative care as end-of-life care, whereas solid tumor oncologists more often view palliative care as a subspecialty for comanaging patients with complex cases. Efforts to integrate palliative care into hematologic malignancy practices will require solutions that address unique barriers to palliative care referral experienced by hematologic malignancy specialists. PMID:25784580

  1. The global state of palliative care-progress and challenges in cancer care.

    PubMed

    Reville, Barbara; Foxwell, Anessa M

    2014-07-01

    All persons have a right to palliative care during cancer treatment and at the end-of-life. The World Health Organization (WHO) defines palliative care as a medical specialty that addresses physical, psychological, social, legal, and spiritual domains of care by an interdisciplinary team of professional and lay health care providers. Widespread adoption of this universal definition will aid policy development and educational initiatives on a national level. The need for palliative care is expanding due to the aging of the world's population and the increase in the rate of cancer in both developed and developing countries. However, in one third of the world there is no access to palliative care for persons with serious or terminal illness. Palliative care improves symptoms, most frequently pain, and improves quality of life for patients and their families, especially in the terminal disease phase. Accessibility to palliative care services, adequately trained health care professionals, availability of essential medicines, and gaps in education vary greatly throughout the world. Pain management is an integral concept in the practice of palliative care; however, opioiphobia, insufficient supply of opioids, and regulatory restrictions contribute to undue suffering for millions. Ongoing advocacy efforts call for increased awareness, palliative care integration with cancer care, and public and professional education. Enacting necessary change will require the engagement of health ministries and the recognition of the unique needs and resources of each country. The aim of this review is to examine progress in palliative care development and explore some of the barriers influencing cancer care across the globe. PMID:25841689

  2. Palliative care: Progress, needs, and challenges

    PubMed Central

    2012-01-01

    Palliative care is increasingly available and the importance of its role increasingly recognized. International work toward making palliative care a basic human right underscores the growing need to ensure comfort and pain relief for the terminally ill. The organizational structures in place for providing such care vary greatly within and across countries; even definition of the term is not uniform. The World Health Organization (WHO) definition includes the statement that palliative care "... intends neither to hasten nor postpone death...", thus illustrating varying socio-cultural perceptions. In addition to cultural differences, other challenges include clinical, economic, and varying institutionalized systems and practices in patient care. This is a commentary on http://www.ijhpr.org/content/1/1/9/ PMID:22913461

  3. Home Inotropes and Other Palliative Care.

    PubMed

    Ginwalla, Mahazarin

    2016-07-01

    Heart failure is a leading case of morbidity and mortality worldwide, and patients with advanced heart failure have limited options without any available cure. These options mainly include cardiac transplantation or mechanical circulatory support device implantation. Chronic home inotropes are an option in these patients for a variety of indications. This report discusses the use of chronic home inotropes in palliated heart failure patients and reviews the role of palliative care management in end-stage heart failure. PMID:27371519

  4. Palliative care. Some organisational considerations.

    PubMed

    Welshman, A

    2005-01-01

    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. The Caring Connections Project: Providing palliative care to Medicaid patients with advanced cancer.

    PubMed

    Pfeifer, Mark P; Ritchie, Christine; Scharfenberger, Jennifer; Keeney, Cynthia; Hermann, Carla; Berwick, Marilyn; Head, Barbara

    2006-01-01

    Palliative care, with its focus on symptom management, patient-centered goals, preparation for life's end, and preservation of quality of life in the face of advancing illness, is a rapidly advancing component of mainstream American medicine. Yet, access to palliative care is often lacking in the community setting and may be further hindered by the presence of healthcare disparities that impact the poor. This article presents a unique approach to assuring the availability of palliative care to Medicaid patients receiving case management services. This descriptive article describes the evolution of a palliative care management pilot program, the Caring Connections Program, beginning with the initial planning and progressing through implementation and provision of services to 56 persons. "Lessons learned" are shared to enable other providers to develop similar programs with success. Patient profiles and intervention strategies are offered to illustrate the work accomplished.

  6. Palliative Care Nursing Interventions in Thailand

    PubMed Central

    Doorenbos, Ardith Z.; Juntasopeepun, Phanida; Eaton, Linda H.; Rue, Tessa; Hong, Elizabeth; Coenen, Amy

    2013-01-01

    Purpose This study aimed to describe the nursing interventions that nurses in Thailand identify as most important in promoting dignified dying. Design This study used a cross-sectional descriptive design. Method A total of 247 Thai nurses completed a paper-and-pencil survey written in Thai. The survey included both demographic questions and palliative care interventions, listed with summative rating scales, from the International Classification for Nursing Practice (ICNP) catalogue Palliative Care for Dignified Dying. Descriptive statistics were used to analyze the data. Findings The five most important nursing interventions to promote dignified dying, ranked by average importance rating, were (a) maintain dignity and privacy, (b) establish trust, (c) manage pain, (d) establish rapport, and (e) manage dyspnea. Conclusions This research identified the palliative care nursing interventions considered most important by nurses in Thailand to promote dignified dying. Implications for Practice The ICNP catalogue Palliative Care for Dignified Dying can be used for planning and managing palliative nursing care in Thailand. PMID:24014487

  7. Palliative Care Enrichment in Geropsychology Fellowships.

    ERIC Educational Resources Information Center

    Strauss, Gerald; Nelson, Barbara J.

    1996-01-01

    Interviews with 6 of 10 Veterans' Affairs programs offering postdoctoral fellowships in geropsychology indicated that only 30% included palliative care or hospice training, despite the fact that the veteran population is likely to have an increasing need for terminal illness care. (SK)

  8. Pediatric palliative and hospice care: Pennsylvania's model of collaboration.

    PubMed

    Hawley, Betsy

    2010-01-01

    In the state of Pennsylvania, a collaborative model has been developed for improving pediatric palliative care and end-of-life care services to children with life-limiting conditions and their families. The inspiration and efforts of several bereaved parents provided the initial impetus for this encouraging model. Pennsylvania's model involves cooperation and collaboration among several groups and initiatives across the state, as well as the integration of parent-professional collaboration at all levels and in each initiative. The collaborating groups include 1) a volunteer grassroots resource and education initiative, Helping Hands-Healing Hearts; 2) the Pittsburgh Pediatric Palliative Care Coalition, a coalition of concerned parents and experienced palliative and hospice care providers working together to improve service availability; and 3) the Pennsylvania Children's Hospice and Palliative Care Coalition, which developed as an outcome of a state-level Pennsylvania Pediatric Hospice Care Task Force, and which, among other activities, works with the Pennsylvania Department of Public Welfare and several Pennsylvania legislators on pertinent policy and legislative initiatives.

  9. Modelling the landscape of palliative care for people with dementia: a European mixed methods study

    PubMed Central

    2013-01-01

    Background Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made. To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care. Discussion A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement. Summary The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project. PMID:23937891

  10. Pediatric Palliative Care: A Reflection on Terminology

    PubMed Central

    Bergstraesser, Eva

    2013-01-01

    The definition of palliative care is the cornerstone of a medical subspecialty that plays a particular role for all who need it, for all who practice it, and increasingly for those who try to understand it. The difficulties around the definition and terminology arise from problems in separating it from other concepts such as supportive care, constructs such as “palliative care is only about dying”, or, in children, the rather vague use of terms like life-threatening and life-limiting diseases. These weaknesses have been recognized and important steps have been taken. This review discusses current definitions as well as efforts to overcome their weaknesses and make the term palliative care—for both children and adults—more intelligible. PMID:25278760

  11. Top 10 things palliative care clinicians wished everyone knew about palliative care.

    PubMed

    Strand, Jacob J; Kamdar, Mihir M; Carey, Elise C

    2013-08-01

    With a focus on improving quality of life for patients, palliative care is a rapidly growing medical subspecialty focusing on the care of patients with serious illness. Basic symptom management, discussions of prognostic understanding, and eliciting treatment goals are essential pieces in the practice of nearly all physicians. Nonetheless, many complex patients with a serious, life-threatening illness benefit from consultation with palliative care specialists, who are trained and experienced in complex symptom management and challenging communication interactions, including medical decision making and aligning goals of care. This article discusses the changing role of modern palliative care, addresses common misconceptions, and presents an argument for early integration of palliative care in the treatment of patients dealing with serious illness. PMID:23910412

  12. Palliative Care as a Standard of Care in Pediatric Oncology.

    PubMed

    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

    2015-12-01

    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.

  13. Palliative care in urgent need of recognition and development in general practice: the example of Germany

    PubMed Central

    2010-01-01

    Background Specialist palliative care is being increasingly recognised and developed to improve end-of-life care in many developed countries. However, only a small proportion of the total number of patients with incurable, progressive diseases actually has direct contact with specialist palliative care practitioners. Using the German situation as an example, the main purpose of this paper is to argue that the emphasis on specialist palliative care services without a similar encouragement of primary palliative care will deliver a constrained service. Discussion For the vast majority of people with incurable, progressive diseases, good palliative care delivered by General Practitioners and community nurses, with access to specialist support when needed, is the optimal response. In Germany, specialist palliative care in the community was established in the 2007 health care reforms. However actual and potential delivery of palliative care by general practitioners and community based nurses has been sorely neglected. The time-consuming care of palliative patients and their families is currently far from accurately reflected in German, indeed most European primary care payment systems. However, it is not just a question of adequate financial compensation but also of the recognition of the fundamental value of this intense form of holistic family medicine. Summary It is imperative palliative care carried out by community nurses and general practitioners is better recognised by health professionals, health insurers, government and the scientific community as a central part of the delivery of health care for people in the last phase of life. Health systems should be arranged so that this critical role of general practice and primary care is intentionally fostered. Palliative care carried out by generalists needs an identity at an academic and practical level, developing in concert with specialist palliative care. PMID:20843334

  14. Teaching small groups in palliative care.

    PubMed

    Macauley, Robert; Billings, J Andrew

    2011-01-01

    Small group learning (i.e., tutorial, seminar, or small problem-solving class) is uniquely suited to transformative change as the ultimate goal of education, and especially appropriate for use in teaching about palliative care. The small group can be a fertile environment for both individual and communal development on both personal and professional levels by recognizing the unique needs of small group facilitation, and developing necessary faculty skills, and by modeling thoughtful preparation, reflective execution, and perceptive feedback. The small group learning approach focuses on learning facilitation and enhancing students' communications skills, which are vital to providing effective, patient-centered palliative care.

  15. Barriers to using palliative care: insight into African American culture.

    PubMed

    Drisdom, Sheronda

    2013-08-01

    As the hospice care setting becomes more racially and ethnically diverse, attending to the different conditions and needs of various groups is essential to providing optimal care. African Americans make up only a small percentage of hospice users in the United States. This article highlights barriers associated with the underenrollment of African Americans into hospice and palliative care programs. A thorough analysis of the literature was conducted to define hospice and palliative care and assess circumstances that impact the use of hospice services by African Americans. Many African Americans are not choosing hospice care because of cultural issues or knowledge deficits, whether through lack of communication or low literacy. Healthcare providers can begin by familiarizing themselves with hospice organizations and developing and putting into practice strategies to communicate with and educate patients and families about hospice care in a culturally sensitive manner. PMID:23899976

  16. Intercultural palliative care: do we need cultural competence?

    PubMed

    Gunaratnam, Yasmin

    2007-10-01

    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. PMID:18073705

  17. Five Policies to Promote Palliative Care for Patients with ESRD

    PubMed Central

    Meier, Diane E.

    2013-01-01

    Summary Patients with ESRD experience complex and costly care that does not always meet their needs. Palliative care, which focuses on improving quality of life and relieving suffering for patients with serious illnesses, could address a large unmet need among patients with ESRD. Strengthening palliative care is a top policy priority for health reform efforts based on strong evidence that palliative care improves value. This commentary outlines palliative care policies for patients with ESRD and is directed at policymakers, dialysis providers, nephrology professional societies, accreditation organizations, and funding agencies who play a key role in the delivery and determination of quality of ESRD care. Herein we suggest policies to promote palliative care for patients with ESRD by addressing key barriers, including the lack of access to palliative care, lack of capacity to deliver palliative care, and a limited evidence base. We also provide examples of how these policies could be implemented within the existing ESRD care infrastructure. PMID:23744000

  18. Five policies to promote palliative care for patients with ESRD.

    PubMed

    Tamura, Manjula Kurella; Meier, Diane E

    2013-10-01

    Patients with ESRD experience complex and costly care that does not always meet their needs. Palliative care, which focuses on improving quality of life and relieving suffering for patients with serious illnesses, could address a large unmet need among patients with ESRD. Strengthening palliative care is a top policy priority for health reform efforts based on strong evidence that palliative care improves value. This commentary outlines palliative care policies for patients with ESRD and is directed at policymakers, dialysis providers, nephrology professional societies, accreditation organizations, and funding agencies who play a key role in the delivery and determination of quality of ESRD care. Herein we suggest policies to promote palliative care for patients with ESRD by addressing key barriers, including the lack of access to palliative care, lack of capacity to deliver palliative care, and a limited evidence base. We also provide examples of how these policies could be implemented within the existing ESRD care infrastructure. PMID:23744000

  19. Predictors of Place of Death for Those in Receipt of Home-Based Palliative Care Services in Ontario, Canada.

    PubMed

    Guerriere, Denise; Husain, Amna; Marshall, Denise; Zagorski, Brandon; Seow, Hsien; Brazil, Kevin; Kennedy, Julia; McLernon, Robin; Burns, Sheri; Coyte, Peter C

    2015-01-01

    Many cancer patients die in institutional settings despite their preference to die at home. A longitudinal, prospective cohort study was conducted to comprehensively assess the determinants of home death for patients receiving home-based palliative care. Data collected from biweekly telephone interviews with caregivers (n = 302) and program databases were entered into a multivariate logistic model. Patients with high nursing costs (odds ratio [OR]: 4.3; confidence interval [CI]: 1.8-10.2) and patients with high personal support worker costs (OR: 2.3; CI: 1.1-4.5) were more likely to die at home than those with low costs. Patients who lived alone were less likely to die at home than those who cohabitated (OR: 0.4; CI: 0.2-0.8), and those with a high propensity for a home-death preference were more likely to die at home than those with a low propensity (OR: 5.8; CI: 1.1-31.3). An understanding of the predictors of place of death may contribute to the development of effective interventions that support home death.

  20. Palliative care registers: infringement on human rights?

    PubMed

    Anthony-Pillai, Rosemarie

    2012-04-01

    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.

  1. Distress, Stress and Solidarity in Palliative Care.

    ERIC Educational Resources Information Center

    deMontigny, Johanne

    1993-01-01

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

  2. [Palliative care regulation and assisted death].

    PubMed

    Cossío-Díaz, José Ramón; Franco González-Salas, José Fernando; Kershenobich-Stalnikowitz, David; Goslinga-Remírez, Lorena; Montes de Oca-Arboleya, Rodrigo; Torres-Morán, Laura Estela; Calderón-Vidal, Mariana

    2015-01-01

    This article analyzes the Mexican regulation on palliative care and its relationship with the public debate on assisted death or suicide. This paper focuses on the rights that people with incurable diseases have, given the current contents of the General Health Statute and other applicable rules. Its main purpose is to activate the public debate on these matters. PMID:25739492

  3. National Hospice and Palliative Care Organization

    MedlinePlus

    ... Life Online Education Site Map Contact Us Privacy Information en Español Copyright Careers Press Room National Hospice and Palliative Care Organization 1731 King Street Alexandria, Virginia 22314 703-837-1500 (phone) 703-837-1233 (fax) Web Design and Development by New Target

  4. [Palliative care regulation and assisted death].

    PubMed

    Cossío-Díaz, José Ramón; Franco González-Salas, José Fernando; Kershenobich-Stalnikowitz, David; Goslinga-Remírez, Lorena; Montes de Oca-Arboleya, Rodrigo; Torres-Morán, Laura Estela; Calderón-Vidal, Mariana

    2015-01-01

    This article analyzes the Mexican regulation on palliative care and its relationship with the public debate on assisted death or suicide. This paper focuses on the rights that people with incurable diseases have, given the current contents of the General Health Statute and other applicable rules. Its main purpose is to activate the public debate on these matters.

  5. [NURSING ETHICS ISSUES IN PALLIATIVE CARE].

    PubMed

    González-Serna, José María; de Llanos Peña, Francisco

    2014-09-01

    The aim of this paper is to describe the essential anthropological categories of terminal illness and the main attitudes of nurses for their care and the ethical criteria for indication and application of palliative therapies. We conclude that ethical attitudes of care in palliative care nursing are based in anthropological categories of dying process; the access granted to nurse by the patient and family within their privacy generates a relational context where communication can be made more effective and thus facilitate the coping existential, spiritual and psychosocial in illness and the process of diagnostic and prognostic information. The qualitative and quantitative clinical information provided by the nursing professional to multidisciplinary team on the evaluation of the effectiveness of care outcomes and therapies in the context of terminal illness assistance allows establishing a plan of treatment appropriate ethically.

  6. Palliative care for Parkinson's disease: has the time come?

    PubMed

    Miyasaki, Janis M; Kluger, Benzi

    2015-05-01

    Although Parkinson's disease (PD) is traditionally viewed as a movement disorder which affects quality of life, recent literature has revealed an increased mortality, a high burden of difficult-to-manage non-motor symptoms (e.g., pain, fatigue), high caregiver distress, and a high utilization of medical services especially in the last year of life. Current medical systems have yet to adequately respond to this mounting evidence through the adoption of palliative care practices and through the provision of palliative care services to both PD patients and to affected families. This holistic, interdisciplinary approach to practice would enhance care delivery, identify and address unmet needs, and avoid interventions and hospitalizations especially in the last months of life. As we approach an era of increased life expectancy, increasing comorbidities among patients, and escalating healthcare costs, physicians must be proactive in focusing on quality of life, reducing medical interventions, and respecting patient autonomy.

  7. Audio-visual communication and its use in palliative care.

    PubMed

    Coyle, Nessa; Khojainova, Natalia; Francavilla, John M; Gonzales, Gilbert R

    2002-02-01

    The technology of telemedicine has been used for over 20 years, involving different areas of medicine, providing medical care for the geographically isolated patients, and uniting geographically isolated clinicians. Today audio-visual technology may be useful in palliative care for the patients lacking access to medical services due to the medical condition rather than geographic isolation. We report results of a three-month trial of using audio-visual communications as a complementary tool in care for a complex palliative care patient. Benefits of this system to the patient included 1) a daily limited physical examination, 2) screening for a need for a clinical visit or admission, 3) lip reading by the deaf patient, 4) satisfaction by the patient and the caregivers with this form of communication as a complement to telephone communication. A brief overview of the historical prospective on telemedicine and a listing of applied telemedicine programs are provided.

  8. How much does care in palliative care wards cost in Poland?

    PubMed Central

    Pokropska, Wieslawa; Łuczak, Jacek; Kaptacz, Anna; Stachowiak, Andrzej; Hurich, Krystyna; Koszela, Monika

    2016-01-01

    Introduction The main task of palliative care units is to provide a dignified life for people with advanced progressive chronic disease through appropriate symptom management, communication between medical specialists and the patient and his family, as well as the coordination of care. Many palliative care units struggle with low incomes from the National Health Fund (NHF), which causes serious economic problems. The aim of the study was to estimate of direct and administrative costs of care and the actual cost per patient per day in selected palliative care units and comparison of the results to the valuation of the NHF. Material and methods The study of the costs of hospitalization of 175 patients was conducted prospectively in five palliative care units (PCUs). The costs directly associated with care were recorded on the specially prepared forms in each unit and also personnel and administrative costs provided by the accounting departments. Results The total costs of analyzed units amounted to 209 002 EUR (898 712 PLN), while the payment for palliative care services from the NHF amounted to 126 010 EUR (541 844 PLN), which accounted for only 60% of the costs incurred by the units. The average cost per person per day of hospitalization, calculated according to the actual duration of hospitalization in the unit, was 83 EUR (357 PLN), and the average payment from the NHF was 52.8 EUR (227 PLN). Underpayment per person per day was approximately 29.2 EUR (125 PLN). Conclusions The study showed a significant difference between the actual cost of palliative care units and the level of refund from the NHF. Based on the analysis of costs, the application has been submitted to the NHF to change the reimbursement amount of palliative care services in 2013. PMID:27186194

  9. A means to an end: a web-based client management system in palliative care.

    PubMed

    O'Connor, Margaret; Erwin, Trudy; Dawson, Linda

    2009-03-01

    Home-based palliative care (hospice) services require comprehensive and fully integrated information systems to develop and manage the various aspects of their business, incorporating client data and management information. These systems assist in maintaining the quality of client care as well as improved management efficiencies. This article reports on a large not-for-profit home-based palliative care service in Australia, which embarked on a project to develop an electronic data management system specifically designed to meet the needs of the palliative care sector. This web-based client information management system represents a joint venture between the organization and a commercial company and has been a very successful project.

  10. A day in the life: a case series of acute care palliative medicine--the Cleveland model.

    PubMed

    Lagman, Ruth; Walsh, Declan; Heintz, Jessica; Legrand, Susan B; Davis, Mellar P

    2008-01-01

    Palliative care in advanced disease is complex. Knowledge and experience of symptom control and management of multiple complications are essential. An interdisciplinary team is also required to meet the medical and psychosocial needs in life-limiting illness. Acute care palliative medicine is a new concept in the spectrum of palliative care services. Acute care palliative medicine, integrated into a tertiary academic medical center, provides expert medical management and specialized care as part of the spectrum of acute medical care services to this challenging patient population. The authors describe a case series to provide a snapshot of a typical day in an acute care inpatient palliative medicine unit. The cases illustrate the sophisticated medical care involved for each individual and the important skill sets of the palliative medicine specialist required to provide high-quality acute medical care for the very ill.

  11. Interventions geared towards strengthening the health system of Namibia through the integration of palliative care.

    PubMed

    Freeman, Rachel; Luyirika, Emmanuel Bk; Namisango, Eve; Kiyange, Fatia

    2016-01-01

    The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation's public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation. PMID:27563348

  12. Interventions geared towards strengthening the health system of Namibia through the integration of palliative care

    PubMed Central

    Freeman, Rachel; Luyirika, Emmanuel BK; Namisango, Eve; Kiyange, Fatia

    2016-01-01

    The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation’s public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation. PMID:27563348

  13. [Red blood transfusion in palliative care situation].

    PubMed

    Velter, C; Montheil, V; Alexandre, J; Vinant, P; Goldwasser, F

    2016-09-01

    Anemia is frequent in oncology. We debate the decision-making process of erythrocyte transfusion in palliative care situation from a case report. A patient with a prostatic metastatic cancer was in palliative situation with asthenia and coronary symptom. We analyze, in this particular case that does not describe reality of normal practice, the decision-making process of erythrocyte transfusion. These transfusions were based, in this case, on the evaluation of oncology prognosis, the short-term vital threats, life project and clinical safety of the transfusion. The patient has received 5 erythrocyte transfusions in 4 months until a multidisciplinary meeting decided to stop transfusion because of poor prognostic situation and bad tolerance of the act. This patient could be a collegial model used to measure the reasonable nature of prescription depending on the purpose and the goal of the patient but does not allow generalization. Although there is low risk of erythrocyte shortage, it seems important to train doctors to reduce abusive transfusion and define transfusion thresholds. Different levels of erythrocyte transfusion security would raise the issue of management of several stocks. Erythrocyte transfusion in palliative care can be considered subject to prognostic information and the palliative aim of the transfusions, multidisciplinary decision-making, during short hospitalizations and with evaluation of the act and consequences for the patient. PMID:27562520

  14. Palliative care for people with dementia.

    PubMed

    Sampson, Elizabeth L

    2010-01-01

    The number of people with dementia will rise dramatically over the next 20 years. Currently, one in three people over the age of 65 will die with dementia. A PubMed search using MeSH headings for 'dementia' AND 'palliative care' and for specific areas, i.e. enteral feeding. National reports, UK guidelines and policies were also consulted. Advanced dementia is now being perceived as a 'terminal illness' with a similar symptom burden and prognosis to advanced cancer. People with dementia have poor access to good quality end-of-life care. Interventions such as antibiotics, fever management policies and enteral tube feeding remain in use despite little evidence that they improve quality of life or other outcomes. Research is required on the effectiveness of 'holistic' palliative care, outcome measures and the impact on carers and families.

  15. Elements of effective palliative care models: a rapid review

    PubMed Central

    2014-01-01

    Background Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Results Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time. Conclusion Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its

  16. The Growth of Palliative Care in U.S. Hospitals: A Status Report

    PubMed Central

    Dumanovsky, Tamara; Augustin, Rachel; Rogers, Maggie; Lettang, Katrina; Meier, Diane E.

    2016-01-01

    Abstract Background: Palliative care is expanding rapidly in the United States. Objective: To examine variation in access to hospital palliative care. Methods: Data were obtained from the American Hospital Association (AHA) Annual Surveys™ for Fiscal Years 2012 and 2013, the National Palliative Care Registry™, the Dartmouth Atlas of Healthcare, the American Census Bureau's American Community Survey (ACS), web searches, and telephone interviews of hospital administrators and program directors. Multivariable logistic regression was used to examine predictors of hospital palliative care programs. Results: Sixty-seven percent of hospitals with 50 or more total facility beds reported a palliative care program. Institutional characteristics were strongly associated with the presence of a hospital palliative care program. Ninety percent of hospitals with 300 beds or more were found to have palliative care programs as compared to 56% of hospitals with fewer than 300 beds. Tax status was also a significant predictor. Not-for-profit hospitals and public hospitals were, respectively, 4.8 times and 7.1 times more likely to have a palliative care program as compared to for-profit hospitals. Palliative care penetration was highest in the New England (88% of hospitals), Pacific (77% of hospitals), and mid-Atlantic (77% of hospitals) states and lowest in the west south central (43% of hospitals) and east south central (42% of hospitals) states. Conclusions: This study demonstrates continued steady growth in the number of hospital palliative care programs in the United States, with almost universal access to services in large U.S. hospitals and academic medical centers. Nevertheless access to palliative care remains uneven and depends on accidents of geography and hospital ownership. PMID:26417923

  17. Music therapy in an integrated pediatric palliative care program.

    PubMed

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

    National experts have recommended that children with life-limiting illnesses receive integrated palliative and medical care. These programs offer a variety of services, including music therapy. Using survey data from parents whose were enrolled in Florida's Partners in Care: Together for Kids (PIC:TFK) program, this study investigates parents' experiences with music therapy. About 44% of children with life-limiting illnesses and 17% of their siblings used music therapy. For children who used music therapy, multivariate results suggest that their parents were 23 times as likely to report satisfaction with the overall PIC:TFK program (P < .05) versus parents whose children did not use music therapy. Pediatric palliative care programs should include music therapy, although recruiting licensed music therapists may be challenging.

  18. The use of weblogs within palliative care: a systematic literature review.

    PubMed

    Ngwenya, Nothando B; Mills, Stella

    2014-03-01

    The use of weblogs has had a huge impact within the healthcare sector, and palliative care users have found a way to express themselves using this technology. The objective of this article is to review current research on palliative care service users' experience of using weblogs. A search was conducted in MEDLINE, PsycINFO and PubMed from 2002 to 2012 focusing on weblogs in palliative care. After extensive searches and assessment, six articles were included in the review. Results show that palliative care bloggers find blogging therapeutic and beneficial. Weblogs empowered individuals leading to health behaviour change while also giving them access to social support thus fostering well-being. However, there is lack of robust evidence showing the benefits of blogging using clinical measures or other scientific methods. Given the growth of these weblogs by palliative care patients, research is required to strengthen evidence for their benefit and to evaluate their effectiveness.

  19. Undergraduate medical education in palliative medicine: the first step in promoting palliative care in Lebanon.

    PubMed

    Naccache, Nicole; Abou Zeid, Hicham; Nasser Ayoub, Eliane; Antakly, Marie-Claire

    2008-01-01

    Effective delivery of high-quality palliative care requires effective interprofessional team working by skilled healthcare professionals. Palliative care is therefore highly suitable for sowing the seeds of interprofessional team working in early professional undergraduate medical education. Integrating palliative medicine in undergraduate medical education curricula seems to be a must. In this review, we present as an example the Palliative and End-of-Life Care Curriculum (PEOLC) used in Canada for undergraduate medical education and underline the need for such a national curriculum in Lebanon. One must keep in mind that medical education does not stop at the end of the medical school, ongoing learning needs exist. Continuous medical education in palliative care should also be emphasized; the overall goal is promoting palliative medicine. Respecting and protecting human dignity is the right of every patient. PMID:19534074

  20. Animal-Assisted Therapy in Pediatric Palliative Care.

    PubMed

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

    2016-09-01

    Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population. PMID:27497015

  1. Animal-Assisted Therapy in Pediatric Palliative Care.

    PubMed

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

    2016-09-01

    Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population.

  2. Transforming children’s palliative care—from ideas to action: highlights from the first ICPCN conference on children’s palliative care

    PubMed Central

    Downing, J; Marston, J; Muckaden, MA; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P

    2014-01-01

    The International Children’s Palliative Care Network (ICPCN) held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, in Mumbai, India, from 10–12 February 2014. The theme of the conference, Transforming children’s palliative care—from ideas to action, reflected the vision of the ICPCN to live in a world where every child who needs it, can access palliative care, regardless of where they live. Key to this is action, to develop service provision and advocate for children’s palliative care. Three pre-conference workshops were held on 9 February, aimed at doctors, nurses, social workers, and volunteers, and focused around the principles of children’s palliative care, and in particular pain and symptom management. The conference brought together 235 participants representing 38 countries. Key themes identified throughout the conference included: the need for advocacy and leadership; for education and research, with great strides having been taken in the development of an evidence base for children’s palliative care, along with the provision of education; the importance of communication and attention to spirituality in children, and issues around clinical care, in particular for neonates. Delegates were continually challenged to transform children’s palliative care in their parts of the world and the conference culminated in the signing of the ICPCN Mumbai Declaration. The Declaration calls upon governments around the world to improve access to quality children’s palliative care services and made a call on the Belgian government not to pass a bill allowing children to be euthanised in that country. The conference highlighted many of the ongoing developments in children’s palliative care around the world, and as she closed the conference, Joan Marston (ICPCN CEO) challenged participants to take positive action and be the champions that the children need, thus transforming children

  3. [Palliative care needs in advanced chronic illness].

    PubMed

    Tripodoro, Vilma A; Rynkiewicz, María C; Llanos, Victoria; Padova, Susana; De Lellis, Silvina; De Simone, Gustavo

    2016-01-01

    About 75% of population will die from one or more chronic progressive diseases. From this projection WHO urged countries to devise strategies for strengthening palliative treatment as part of comprehensive care. In Catalonia, Spain, direct measurement of the prevalence of these patients with NECPAL CCOMS-ICO© tool was 1.5% of the population. This tool is an indicative, not dichotomous, quali-quantitative multifactorial evaluation to be completed by the treating physician. In Argentina there is no information on these patients. Our goal was to explore and characterize the proportion of chronically ill patients in palliative care needs, by NECPAL CCOMS-ICO© tool, in an accessible population of the City of Buenos Aires. General hospitals of the Health Region 2 (Piñero, álvarez and Santojanni) and its program areas were surveyed. In Health Region 1, we surveyed the Udaondo gastroenterology hospital. A total of 53 physicians (704 patients) were interviewed. It was identified that 29.5% of these patients were affected by advanced chronic diseases; 72.1% of them were NECPAL positive, younger (median 64) than in others studies, and more than 98% presented high levels of comorbidity. Palliative care demand (31.4%) and needs (52.7%) were recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify, with an instrument not based on mortality that, in Buenos Aires City, 1 in 3 patients with chronic diseases could die in the next year and had palliative care needs. PMID:27295702

  4. Palliative care in Africa since 2005: good progress, but much further to go.

    PubMed

    Grant, Liz; Downing, Julia; Namukwaya, Elizabeth; Leng, Mhoira; Murray, Scott A

    2011-09-01

    There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only five countries in 2004, palliative care is now delivered in nearly 50% of African countries. Even so, still less than 5% of people in need currently receive it, and with an estimated 300% increase in the need for palliative care for people with non-communicable diseases over the next 20 years, and with those living with HIV needing more prolonged support, the demand for palliative care will continue to outpace supply. African countries adopting a public health approach and networking together through palliative care associations are beginning to embed and integrate palliative care into health systems and communities. Current challenges are to increase coverage while maintaining quality, to develop dynamic and flexible responses to the changing illness patterns in Africa, and to counter false beliefs. Resourcefulness and harnessing new technologies such as mobile phones while respecting cultural traditions, may be the way forward. The authors review recent progress in policy, service provision and training initiatives in Africa, illustrate the current situation at grass roots level from a recent evaluation of programmes in Kenya, Malawi and Uganda, analyse the current urgent challenges and suggest some ways ahead. PMID:24653220

  5. Palliative care - fear and anxiety

    MedlinePlus

    ... heartbeat Shaking Muscle twitches Sweating Trouble sleeping Bad dreams or nightmares Extreme restlessness (called agitation) How to ... is accredited by URAC, also known as the American Accreditation HealthCare Commission (www.urac.org). URAC's accreditation ...

  6. A Parent's Journey: Incorporating Principles of Palliative Care into Practice for Children with Chronic Neurologic Diseases.

    PubMed

    Brown, Allyson; Clark, Jonna D

    2015-09-01

    Rather than in conflict or in competition with the curative model of care, pediatric palliative care is a complementary and transdisciplinary approach used to optimize medical care for children with complex medical conditions. It provides care to the whole child, including physical, mental, and spiritual dimensions, in addition to support for the family. Through the voice of a parent, the following case-based discussion demonstrates how the fundamentals of palliative care medicine, when instituted early in the course of disease, can assist parents and families with shared medical decision making, ultimately improving the quality of life for children with life-limiting illnesses. Pediatric neurologists, as subspecialists who provide medical care for children with chronic and complex conditions, should consider invoking the principles of palliative care early in the course of a disease process, either through applying general facets or, if available, through consultation with a specialty palliative care service. PMID:26358425

  7. Assessing the effectiveness and acceptability of interprofessional palliative care education.

    PubMed

    Koffman, Jonathan; Higginson, Irene J

    2005-01-01

    Interprofessional education in health care in general and palliative care has been the focus of increasing attention in recent years. However, there is still controversy about its outcomes and few courses have been evaluated. The aims of this evaluation were to explore (1) the career progression of former students who attended an interprofessional MSc in palliative care; (2) the activities former students were engaged in as a result of attending the course; and (3) the experience of attending an interprofessional postgraduate course in palliative care. Former students who attended the course between January 1998 and January 2004 were surveyed using a postal questionnaire. Of the 56 students who completed the course, 44 (79%) responded; 23 (52%) were doctors, 20 (45%) nurses, and one an occupational therapist. Career progression was significant for doctors (Z=-2.08, p=0.04) and for nurses (Z=-2.4, p=0.017). Thirty-nine (89%) former students believed this was due to attending the course. Former students described a wide range of clinical, research, and service development activities they were involved in as a result of attending the course. Qualitative data highlighted the benefits of attending an interprofessional course where the following themes became evident: lateral thinking, challenging misconceptions, enhancing teamwork opportunities, and professional networks and confidence. Funding should be made available to extend interprofessional education to a wide range of professionals who care for patients with advanced disease and their families.

  8. A fast track path improves access to palliative care for people with learning disabilities.

    PubMed

    Whitington, Jane; Ma, Peng

    People with learning disabilities often experience inequalities in accessing general health services. This group, their families and carers need access to effective palliative care when facing a life limiting illness. This article describes the development and implementation of a fast track referral pathway for people with learning disabilities at St Francis Hospice in Essex. Our aim is to share this pathway so others can replicate the collaborative working to improve access to palliative care services for this group. PMID:20514883

  9. Palliative care in patients with lung cancer

    PubMed Central

    Farbicka, Paulina

    2013-01-01

    Lung cancer accounts for 12% of all cancers and has the highest annual rate of mortality in men and women. The overall aim is cure or prolongation of life without evidence of disease. Almost 60% of patients at the moment of diagnosis are not eligible for radical treatment. Therefore soothing and supportive treatment is the only treatment of choice. Patients with lung cancer who have symptoms of dyspnea, chronic cough, severe pain, exhaustion and cachexia syndrome, fear and depression and significantly reduced physical and intellectual activities are qualified for inpatient or home palliative care. Knowledge about various methods used in palliative treatment allows one to alleviate symptoms that occur in an advanced stage of disease with an expected short survival period. Methods of oncological treatment that are often used in patients with advanced lung cancer include radiotherapy and chemotherapy. Drawing attention to the earlier implementation of palliative care is an objective of research carried out during recent years. Advances in surgical and conservative treatment of these patients have contributed to better outcomes and longer survival time. PMID:24596508

  10. Palliative Care in the Emergency Department

    PubMed Central

    Mierendorf, Susanne M; Gidvani, Vinita

    2014-01-01

    The Emergency Department (ED) is the place where people most frequently seek urgent care. For patients living with chronic disease or malignancy who may be in a crisis, this visit may be pivotal in determining the patients’ trajectory. There is a large movement in education of emergency medicine physicians, hospitalists, and intensivists from acute aggressive interventions to patient-goal assessment, recognizing last stages of life and prioritizing symptom management. Although the ED is not considered an ideal place to begin palliative care, hospital-based physicians may assist in eliciting the patient’s goals of care and discussing prognosis and disease trajectory. This may help shift to noncurative treatment. This article will summarize the following: identification of patients who may need palliation, discussing prognosis, eliciting goals of care and directives, symptom management in the ED, and making plans for further care. These efforts have been shown to improve outcomes and to decrease length of stay and cost. The focus of this article is relieving “patient” symptoms and family distress, honoring the patient’s goals of care, and assisting in transition to a noncurative approach and placement where this may be accomplished. PMID:24694318

  11. “Not the ‘Grim Reaper Service’”: An Assessment of Provider Knowledge, Attitudes, and Perceptions Regarding Palliative Care Referral Barriers in Heart Failure

    PubMed Central

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

    2014-01-01

    Background Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative care providers to impede palliative care referral for HF patients. Methods and Results We conducted semistructured interviews regarding (1) perceived needs of patients with advanced HF; (2) knowledge, attitudes, and experiences with specialist palliative care; (3) perceived indications for and optimal timing of palliative care referral in HF; and (4) perceived barriers to palliative care referral. Two investigators analyzed data using template analysis, a qualitative technique. We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF‐related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care. Nevertheless, providers expressed interest for integrating palliative care into traditional HF care, but were unsure of how to initiate collaboration. Conclusions Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death. These factors represent potentially modifiable targets for provider education, which may help to improve palliative care referral for HF patients with unresolved disease‐related burden. PMID:24385453

  12. Creating capacity through partnership: a palliative care skills development programme.

    PubMed

    Kelsall, Kay; Brennan, Ebony; Cole, Teresa

    2015-08-01

    This paper presents the development and implementation of a recurrently funded, rolling, 6-month palliative care secondment programme for NHS community staff nurses based in a rural health economy in Southwest England. The programme is a key tool in a wider development plan for improving access to, and the quality of, palliative and end-of-life care for a dispersed rural population. This is part of a much bigger programme of integration to meet the shared challenges of service capacity, equity, and sustainability that are presented by the geographical and demographical profile of the locality. The 'bigger picture' is defined and set in the context of the national drive and evidence base for integration in order to explain the reasons behind the secondment programme. This is followed by outlining the iterative process of design and implementation--the 'what?' and 'how?'--and key learning points to date are shared.

  13. Palliative care for patients with non-malignant respiratory disease.

    PubMed

    McVeigh, Clare

    2015-05-01

    Non-malignant respiratory disease is a chronic life-limiting condition that requires holistic palliative care. Patients with non-malignant respiratory disease have a range of biopsychosocial and spiritual needs, which healthcare professionals should recognise and manage effectively. Healthcare professionals have an important role in enabling the delivery of effective palliative care to this group of patients and their carers, and in recognising the many factors that may impede delivery of palliative care. PMID:25942985

  14. The basis, ethics and provision of palliative care for dementia: A review.

    PubMed

    Mahin-Babaei, Fariba; Hilal, Jamal; Hughes, Julian C

    2016-01-01

    Interest in palliative care for people with dementia has been around for over two decades. There are clinical and ethical challenges and practical problems around the implementation of good quality palliative care in dementia. This narrative review of the literature focuses on the rationale or basis for services, some of the ethical issues that arise (particularly to do with artificial nutrition and hydration) and on the provision and implementation of services. We focus on the most recent literature. The rationale for palliative care for people with dementia is based on research and on an identified need for better clinical care. But the research largely demonstrates a paucity of good quality evidence, albeit particular interventions (and non-interventions) can be justified in certain circumstances. Numerous specific clinical challenges in end-of-life care for people with dementia are ethical in nature. We focus on literature around artificial nutrition and hydration and conclude that good communication, attention to the evidence and keeping the well-being of the person with dementia firmly in mind will guide ethical decision-making. Numerous challenges surround the provision of palliative care for people with dementia. Palliative care in dementia has been given definition, but can still be contested. Different professionals provide services in different locations. More research and education are required. No single service can provide palliative care for people with dementia. PMID:26421475

  15. The basis, ethics and provision of palliative care for dementia: A review.

    PubMed

    Mahin-Babaei, Fariba; Hilal, Jamal; Hughes, Julian C

    2016-01-01

    Interest in palliative care for people with dementia has been around for over two decades. There are clinical and ethical challenges and practical problems around the implementation of good quality palliative care in dementia. This narrative review of the literature focuses on the rationale or basis for services, some of the ethical issues that arise (particularly to do with artificial nutrition and hydration) and on the provision and implementation of services. We focus on the most recent literature. The rationale for palliative care for people with dementia is based on research and on an identified need for better clinical care. But the research largely demonstrates a paucity of good quality evidence, albeit particular interventions (and non-interventions) can be justified in certain circumstances. Numerous specific clinical challenges in end-of-life care for people with dementia are ethical in nature. We focus on literature around artificial nutrition and hydration and conclude that good communication, attention to the evidence and keeping the well-being of the person with dementia firmly in mind will guide ethical decision-making. Numerous challenges surround the provision of palliative care for people with dementia. Palliative care in dementia has been given definition, but can still be contested. Different professionals provide services in different locations. More research and education are required. No single service can provide palliative care for people with dementia.

  16. Palliative care: a challenge for orthopaedic nursing care.

    PubMed

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

    2005-01-01

    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 care and African American women living with HIV.

    PubMed

    DeMarco, Rosanna F

    2010-08-01

    It is challenging to develop and assess skills in a classroom setting, for graduate students particularly, in the area of quality improvement project plans that are real, relevant, and sensitive in a unique health care context. Although understanding significant issues related to palliative care needs of U.S. citizens through the interpretation of those who publish in this area is extremely helpful to students, it does not allow for an experience uniquely situated in realities faced by those living with life-threatening and chronic illness or in a time frame that is current. Graduate students in a Health Resources and Services Administration-funded program of study completed a secondary data analysis of digitally recorded conversations of African American women living with human immunodeficiency virus or acquired immune deficiency syndrome to identify consumer-driven palliative care needs and create possible quality improvement program solutions. This exercise supports the World Health Organization's advice to become palliative care leaders through engagement in clients' realities.

  18. Palliative care in Córdoba: experience of the Marie Curie Foundation and the Oncology Service of Sanatorio del Salvador.

    PubMed

    Rubio, L A

    1998-07-01

    Córdoba is a city with 1,300,000 inhabitants located in the center of Argentina. Although Palliative Medicine is a discipline that has been present for a little over 10 years, it has not developed in step with demand, owing to lack of political will and insufficient support from the Health Administration. However, the existing units have expanded, thanks to the efforts of their staff members, who help hundreds of terminally ill patients and their families, provide training at undergraduate and postgraduate university levels, and make information available to the general public through different activities in the community.

  19. Providers' perceptions of Aboriginal palliative care in British Columbia's rural interior.

    PubMed

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

    2010-09-01

    Aboriginal Canadians experience a disproportionate burden of ill-health and have endured a history of racism in accessing and using health care. Meanwhile, this population is rapidly growing, resulting in an urgent need to facilitate better quality of living and dying in many ways, including through enhancing (cultural) access to palliative care. In this article, we report the findings from a qualitative case study undertaken in rural British Columbia, Canada through exploring the perceptions of Aboriginal palliative care in a region identified as lacking in formal palliative care services and having only a limited Aboriginal population. Using interview data collected from 31 formal and informal palliative care providers (May-September 2008), we thematically explore not only the existing challenges and contradictions associated with the prioritisation and provision of Aboriginal palliative care in the region in terms of (in)visibility but also identify the elements necessary to enhance such care in the future. The implications for service providers in rural regions are such that consideration of the presence of small, and not always 'visible', populations is necessary; while rural care providers are known for their resilience and resourcefulness, increased opportunities for meaningful two-way knowledge exchange with peers and consultation with experts cannot be overlooked. Doing so will serve to enhance culturally accessible palliative care in the region in general and for Aboriginal peoples specifically. This analysis thus contributes to a substantial gap in the palliative care literature concerning service providers' perceptions surrounding Aboriginal palliative care as well as Aboriginal peoples' experiences with receiving such care. Given the growing Aboriginal population and continued health inequities, this study serves to not only increase awareness but also create better living and dying conditions in small but incremental ways.

  20. Ethical issues in palliative care.

    PubMed

    Randall, F M

    1999-10-01

    The relief of suffering is one of the aims of health care. Pain relief is a moral obligation in health care, not an optional extra. Doctors have moral obligations to strive to relieve pain, to be competent in basic pain control, and to endeavour to give patients an adequate understanding of their illness and painkillers. The most common moral problem in pain control in terminally ill patients is the conflict between the obligation to relieve suffering and the obligation to prolong life. The law prohibits intentionally causing the death of another person. Debates follow as to what constitutes an intention to cause death, and what actually constitutes a cause of death. At present, doctors are legally permitted to give sedatives and analgesics to terminally ill patients with the intention of relieving suffering, even if life is shortened. The moral principle of the 'double effect' relates to this and is explained. It relies on a distinction between intended and foreseen effects of treatment. Some people dispute the distinction between intended and foreseen effects and claim that the principle of double effect allows doctors who intend euthanasia to carry it out under cover of the law. This debate is explored in the article. Finally, is it ever morally justifiable to end the patient's life on the grounds that this is the only way to end pain? Even if it is, should euthanasia be legalised? A brief comment on these issues, and the roles of law and morality, are made.

  1. [The present and future of community/home-based palliative care in Taiwan].

    PubMed

    Ueng, Ruey-Shiuan; Hsu, Su-Hsuan; Shih, Chih-Yuan; Huang, Sheng-Jean

    2015-04-01

    In Taiwan, the Department of Health (DOH) has implemented regulations and policies related to hospice and palliative care since 1995. Taiwan is the first country in Asia to have a Natural Death Act, promulgated in 2000. Although recognition of the need for palliative care in non-cancer terminally ill patients is increasing, at present, the needs of these patients are often not met. Moreover, while a majority of the population prefers to die at home, the percentage of patients who die in the home setting remains small. The palliative care system should be adjusted to improve the accessibility and continuity of care based on the needs of patients. Therefore, the Jin-Shan Branch of the National Taiwan University Hospital has run a pilot community palliative care service model since 2012. National Health Insurance reimbursement was introduced in 2014 for community-based palliative care services. Establishing a formal system of community-based palliative care should be encouraged in order to improve the quality of care at the end of life and to allow more patients to receive end-of-life care and die in their own communities. This system will require that skilled nurses provide discharge planning, symptoms control, end-of-life communications, social-resources integration, and social-support networks in order to achieve a high quality of end-of-life care. PMID:25854944

  2. Palliative Care Eases Symptoms, Enhances Lives | NIH MedlinePlus the Magazine

    MedlinePlus

    ... 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 ...

  3. Symptom management in palliative care and end of life care.

    PubMed

    Bookbinder, Marilyn; McHugh, Marlene E

    2010-09-01

    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.

  4. Physician Factors Associated with Outpatient Palliative Care Referral

    PubMed Central

    Ahluwalia, Sangeeta C.; Fried, Terri R.

    2010-01-01

    Background Outpatient palliative care can provide significant benefits to seriously ill patients, but several barriers to appropriate referrals remain. No study has examined the physician factors associated with referral to outpatient palliative care. Objective To determine physician factors, with a focus on physician beliefs, associated with referral to palliative care. Design Cross-sectional study of 170 primary care physicians at Kaiser Permanente (KP), a large nonprofit health maintenance organization (HMO), using a self-administered questionnaire. Results Of the 145 respondents, 100 (70%) reported referring any patients to the palliative care program in the prior year, with a median of 3 referrals (interquartile range 2, 6). Factors associated with referral included working at KP between 10 and 20 years as compared to <10 years [Odds ratio [OR] 6.29 (95% confidence interval [CI] 1.38, 28.6)] and having personal experience with palliative care [OR 2.13 (95% CI 0.95, 4.976)]. None of the beliefs scales was associated with referral. Conclusions Physician characteristics other than their beliefs about palliative care played a significant role in determining referral. Palliative care programs should aim to increase their visibility in the outpatient setting to increase referrals by primary care physicians. Tools that help physicians identify seriously ill patients who could benefit from palliative care may also serve to increase appropriate referrals. PMID:19460830

  5. Factors affecting recruitment to an observational multicentre palliative care study

    PubMed Central

    Stone, Patrick C; Gwilliam, Bridget; Keeley, Vaughan; Todd, Chris; Kelly, Laura C; Barclay, Stephen

    2013-01-01

    Objectives To identify those factors which adversely affected recruitment to a large multicentre palliative care study. Methods Patient accrual to a multicentre, observational, palliative care study was monitored at three critical junctures in the research process. (1) Eligibility—did the patient fulfil the study entry criteria? (2) Accessibility—was it possible to access the patient to be able to inform them about the study? (3) Consent—did the patient agree to participate in the study? The reasons why patients were ineligible, inaccessible or refused consent were recorded. Results 12 412 consecutive referrals to participating clinical services were screened for study inclusion of whom 5394 (43%) were deemed to be ineligible. Of the remaining patients 4617/7018 (66%) were inaccessible to the research team. The most common reasons being precipitous death, ‘gatekeeping’ by clinical staff or rapid discharge. Of the 2410 patients who were visited by the research team and asked to participate in the study 1378 (57%) declined. Overall 8.2% (1018/12 412) of patients screened participated in the study. There were significant differences in recruitment patterns between hospice inpatient units, hospital support and community palliative care teams. Conclusions Systematic monitoring and analysis of patient flows through the clinical trial accrual process provided valuable insights about the reasons for failure to recruit patients to a clinical trial and may help to improve recruitment in future studies. PMID:24644750

  6. Experience in Strategic Networking to Promote Palliative Care in a Clinical Academic Setting in India

    PubMed Central

    Nair, Shoba; Tarey, SD; Barathi, B; Mary, Thiophin Regina; Mathew, Lovely; Daniel, Sudha Pauline

    2016-01-01

    Background: Palliative care in low and middle-income countries is a new discipline, responding to a greater patient need, than in high-income countries. By its very nature, palliative as a specialty has to network with other specialties to provide quality care to patients. For any medical discipline to grow as a specialty, it should be well established in the teaching medical institutions of that country. Data show that palliative care is more likely to establish and grow in an academic health care institution. It is a necessity that multiple networking strategies are adopted to reach this goal. Objectives: (1) To describe a strategic approach to palliative care service development and integration into clinical academic setting. (2) To present the change in metrics to evaluate progress. Design and Setting: This is a descriptive study wherein, the different strategies that are adopted by the Department of Palliative Medicine for networking in an academic health care institution and outside the institution are scrutinized. Measurement: The impact of this networking was assessed, one, at the level of academics and the other, at the level of service. The number of people who attended various training programs conducted by the department and the number of patients who availed palliative care service over the years were assessed. Results: Ten different strategies were identified that helped with networking of palliative care in the institution. During this time, the referrals to the department increased both for malignant diseases (52–395) and nonmalignant diseases (5–353) from 2000 to 2013. The academic sessions conducted by the department for undergraduates also saw an increase in the number of hours from 6 to 12, apart from the increase in a number of courses conducted by the department for doctors and nurses. Conclusion: Networking is an essential strategy for the establishment of a relatively new medical discipline like palliative care in a developing and

  7. Palliative Care: Increasing the quality of life for patients and families… | NIH MedlinePlus the Magazine

    MedlinePlus

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

  8. Using cannabinoids in pain and palliative care.

    PubMed

    Peat, Sue

    2010-10-01

    Interest in the use of cannabinoids in a clinical setting is gradually increasing, particularly in patients where more conventional treatments have failed. They have been reported as offering perceived benefits in a wide range of conditions, but the major interest at present is centred on their place in pain management and in the palliation of symptoms secondary to terminal cancer and neurological disease. The potential benefits include symptomatic relief for patients suffering from intractable neuropathic pain, anorexia, anxiety and muscle spasm. There is clear consensus that cannibinoids should not be used as a first-line monotherapy, but should be considered as valuable adjuvants to more commonly indicated therapeutic options in the management of palliative care patients. Scientific evidence documenting the benefits of the canibinoids nabilone and sativex is accumulating, but needs to be evaluated carefully in the light of the paucity of available data. Both drugs are usually used under the guidance of specialist units. Nabilone and Sativex are now controlled drugs, and are frequently used outside of their licensed indication (control of chemotherapy-induced nausea and vomiting) and hence particular care needs to be taken in evaluating the rational for their use. Sativex has been recently licenced for use in the management of patients with multiple sclerosis. PMID:20972379

  9. Enhancing Palliative Care Education in Medical School Curricula: Implementation of the Palliative Education Assessment Tool.

    ERIC Educational Resources Information Center

    Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.

    2002-01-01

    Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…

  10. Integration of legal aspects and human rights approach in palliative care delivery-the Nyeri Hospice model.

    PubMed

    Musyoki, David; Gichohi, Sarafina; Ritho, Johnson; Ali, Zipporah; Kinyanjui, Asaph; Muinga, Esther

    2016-01-01

    Palliative care is patient and family-centred care that optimises quality of life by anticipating, preventing, and treating suffering. Open Society Foundation public health program (2011) notes that people facing life-threatening illnesses are deeply vulnerable: often in severe physical pain, worried about death, incapacitation, or the fate of their loved ones. Legal issues can increase stress for patients and families and make coping harder, impacting on the quality of care. In the absence of a clear legal provision expressly recognising palliative care in Kenya, providers may face numerous legal and ethical dilemmas that affect the availability, accessibility, and delivery of palliative care services and commodities. In order to ensure positive outcomes from patients, their families, and providers, palliative care services should be prioritised by all and includes advocating for the integration of legal support into those services. Palliative care service providers should be able to identify the various needs of patients and their families including specific issues requiring legal advice and interventions. Access to legal services remains a big challenge in Kenya, with limited availability of specialised legal services for health-related legal issues. An increased awareness of the benefits of legal services in palliative care will drive demand for easily accessible and more affordable direct legal services to address legal issues for a more holistic approach to quality palliative care. PMID:27563351

  11. Integration of legal aspects and human rights approach in palliative care delivery—the Nyeri Hospice model

    PubMed Central

    Musyoki, David; Gichohi, Sarafina; Ritho, Johnson; Ali, Zipporah; Kinyanjui, Asaph; Muinga, Esther

    2016-01-01

    Palliative care is patient and family-centred care that optimises quality of life by anticipating, preventing, and treating suffering. Open Society Foundation public health program (2011) notes that people facing life-threatening illnesses are deeply vulnerable: often in severe physical pain, worried about death, incapacitation, or the fate of their loved ones. Legal issues can increase stress for patients and families and make coping harder, impacting on the quality of care. In the absence of a clear legal provision expressly recognising palliative care in Kenya, providers may face numerous legal and ethical dilemmas that affect the availability, accessibility, and delivery of palliative care services and commodities. In order to ensure positive outcomes from patients, their families, and providers, palliative care services should be prioritised by all and includes advocating for the integration of legal support into those services. Palliative care service providers should be able to identify the various needs of patients and their families including specific issues requiring legal advice and interventions. Access to legal services remains a big challenge in Kenya, with limited availability of specialised legal services for health-related legal issues. An increased awareness of the benefits of legal services in palliative care will drive demand for easily accessible and more affordable direct legal services to address legal issues for a more holistic approach to quality palliative care. PMID:27563351

  12. Research Priorities in Geriatric Palliative Care: Policy Initiatives

    PubMed Central

    Unroe, Kathleen T.

    2013-01-01

    Abstract Coordinated palliative care matched to patient needs improves quality of care for vulnerable patients with serious illness and reduces costly use of hospitals and emergency departments. Unfortunately, there is a disconnect in translating geriatric palliative care models and principles into policy and widespread practice. Gaps in policy-relevant research are addressed, including implementation strategies to scale up existing care models, the role of palliative care and geriatrics in health care payment reform efforts, development of quality measures for complex patients, strategies to address workforce shortages, and an approach to hospice reform. PMID:24147877

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

    ERIC Educational Resources Information Center

    Lloyd-Williams, Mari; Field, David

    2002-01-01

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

  14. Are family medicine residents adequately trained to deliver palliative care?

    PubMed Central

    Mahtani, Ramona; Kurahashi, Allison M.; Buchman, Sandy; Webster, Fiona; Husain, Amna; Goldman, Russell

    2015-01-01

    Objective To explore educational factors that influence family medicine residents’ (FMRs’) intentions to offer palliative care and palliative care home visits to patients. Design Qualitative descriptive study. Setting A Canadian, urban, specialized palliative care centre. Participants First-year (n = 9) and second-year (n = 6) FMRs. Methods Semistructured interviews were conducted with FMRs following a 4-week palliative care rotation. Questions focused on participant experiences during the rotation and perceptions about their roles as family physicians in the delivery of palliative care and home visits. Participant responses were analyzed to summarize and interpret patterns related to their educational experience during their rotation. Main findings Four interrelated themes were identified that described this experience: foundational skill development owing to training in a specialized setting; additional need for education and support; unaddressed gaps in pragmatic skills; and uncertainty about family physicians’ role in palliative care. Conclusion Residents described experiences that both supported and inadvertently discouraged them from considering future engagement in palliative care. Reassuringly, residents were also able to underscore opportunities for improvement in palliative care education. PMID:27035008

  15. The needs, current knowledge, and attitudes of care staff toward the implementation of palliative care in old age homes.

    PubMed

    Lo, Raymond S K; Kwan, Bonnie H F; Lau, Kay P K; Kwan, Cecilia W M; Lam, L M; Woo, Jean

    2010-06-01

    This study aims to explore in depth the needs, current knowledge, and attitudes of all ranks of old age home staff. A large-scale qualitative study with 13 semistructured focus groups was conducted in Hong Kong. Key themes were extracted by framework analysis. Three major themes were extracted, including role as a service provider, current knowledge, and attitude toward palliative care. There was a marked difference in familiarity with the concept of ''palliative care'' between different groups of staff, yet both shared the motivation for enhancement. The biggest concerns for the staff were elderly residents' readiness to accept palliative care, manpower, and resources. Care staff, regardless of rank, seemed to welcome and be ready to adopt a palliative care approach in caring for old age home residents, though not without worries and concerns. PMID:19959840

  16. Opportunities to maximize value with integrated palliative care

    PubMed Central

    Bergman, Jonathan; Laviana, Aaron A

    2016-01-01

    Palliative care involves aggressively addressing and treating psychosocial, spiritual, religious, and family concerns, as well as considering the overall psychosocial structures supporting a patient. The concept of integrated palliative care removes the either/or decision a patient needs to make: they need not decide if they want either aggressive chemotherapy from their oncologist or symptom-guided palliative care but rather they can be comanaged by several clinicians, including a palliative care clinician, to maximize the benefit to them. One common misconception about palliative care, and supportive care in general, is that it amounts to “doing nothing” or “giving up” on aggressive treatments for patients. Rather, palliative care involves very aggressive care, targeted at patient symptoms, quality-of-life, psychosocial needs, family needs, and others. Integrating palliative care into the care plan for individuals with advanced diseases does not necessarily imply that a patient must forego other treatment options, including those aimed at a cure, prolonging of life, or palliation. Implementing interventions to understand patient preferences and to ensure those preferences are addressed, including preferences related to palliative and supportive care, is vital in improving the patient-centeredness and value of surgical care. Given our aging population and the disproportionate cost of end-of-life care, this holds great hope in bending the cost curve of health care spending, ensuring patient-centeredness, and improving quality and value of care. Level 1 evidence supports this model, and it has been achieved in several settings; the next necessary step is to disseminate such models more broadly. PMID:27226721

  17. Reporting of Pediatric Palliative Care: A Systematic Review and Quantitative Analysis of Research Publications in Palliative Care Journals

    PubMed Central

    Kumar, Senthil P

    2011-01-01

    Context: Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. Aims: This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. Settings and Design: This was a systematic review of palliative care journals. Materials and Methods: Twelve palliative care journals were searched for articles with “paediatric” or “children” in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles’ category was further classified according to study designs. Statistical Analysis Used: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. Results: The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). 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. PMID:22347775

  18. Japanese Bereaved Family Members' Perspectives of Palliative Care Units and Palliative Care: J-HOPE Study Results.

    PubMed

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

    2016-06-01

    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.

  19. Palliative care - fluid, food, and digestion

    MedlinePlus

    ... Palliative Medicine . Philadelphia, PA: Elsevier; 2013:chap 29. Levine SK, Shega JW. How should medications be initiated ... Palliative Medicine . Philadelphia, PA: Elsevier; 2013:chap 26. Levine SK, Shega JW. What interventions are effective for ...

  20. Palliative Radiotherapy with or without Additional Care by a Multidisciplinary Palliative Care Team: A Retrospective Comparison

    PubMed Central

    Dalhaug, Astrid; Pawinski, Adam; Aandahl, Gro; Haukland, Ellinor; Engljähringer, Kirsten

    2014-01-01

    Purpose. To analyze pattern of care and survival after palliative radiotherapy (RT) in patients managed exclusively by regular oncology staff or a multidisciplinary palliative care team (MPCT) in addition. Methods. Retrospective analysis of 522 RT courses. Comparison of Two Groups: MPCT versus none. Results. We analyzed 140 RT courses (27%) with MPCT care and 382 without it. The following statistically significant differences were observed: 33% of female patients had MPCT care versus only 23% of male patients and 37% of patients <65 years had MPCT care versus only 22% of older patients. MPCT patients were more likely to have poor performance status and liver metastases. In the MPCT group steroid and opioid use was significantly more common. Dose-fractionation regimens were similar. Median survival was significantly shorter in the MPCT group, 3.9 versus 6.9 months. In multivariate analysis, MPCT care was not associated with survival. Adjusted for confounders, MPCT care reduced the likelihood of incomplete RT by 33%, P > 0.05. Conclusions. Patterns of referral and care differed, for example, regarding age and medication use. It seems possible that MPCT care reduces likelihood of incomplete RT. Therefore, the impact of MPCT care on symptom control should be investigated and objective referral criteria should be developed. PMID:25006507

  1. Enhancing family physician capacity to deliver quality palliative home care

    PubMed Central

    Marshall, Denise; Howell, Doris; Brazil, Kevin; Howard, Michelle; Taniguchi, Alan

    2008-01-01

    ABSTRACT PROBLEM BEING ADDRESSED Family physicians face innumerable challenges to delivering quality palliative home care to meet the complex needs of end-of-life patients and their families. OBJECTIVE OF PROGRAM To implement a model of shared care to enhance family physicians’ ability to deliver quality palliative home care, particularly in a community-based setting. PROGRAM DESCRIPTION Family physicians in 3 group practices (N = 21) in Ontario’s Niagara West region collaborated with an interprofessional palliative care team (including a palliative care advanced practice nurse, a palliative medicine physician, a bereavement counselor, a psychosocial-spiritual advisor, and a case manager) in a shared-care partnership to provide comprehensive palliative home care. Key features of the program included systematic and timely identification of end-of-life patients, needs assessments, symptom and psychosocial support interventions, regular communication between team members, and coordinated care guided by outcome-based assessment in the home. In addition, educational initiatives were provided to enhance family physicians’ knowledge and skills. CONCLUSION Because of the program, participants reported improved communication, effective interprofessional collaboration, and the capacity to deliver palliative home care, 24 hours a day, 7 days a week, to end-of-life patients in the community. PMID:19074714

  2. Assessing patient care in palliative care using the healthcare matrix.

    PubMed

    Arthur, Joseph; Kwon, Jung Hye; Reddy, Suresh; Quinn, Doris C; Bruera, Eduardo; Hui, David

    2013-08-01

    The healthcare matrix is a novel assessment tool that facilitates systematic examination of patient cases using criteria established by the Accreditation Council for Graduate Medical Education and the Institute of Medicine. It is particularly useful for analyzing complex cases, although its use in the palliative care setting has not been documented. We describe here the use of the healthcare matrix to examine the healthcare encounters of a 63 year-old patient with advanced cancer. The healthcare matrix helped us to dissect the physical, psychosocial, logistical, professional, and ethical aspects of care, and to highlight multiple opportunities for quality improvement. In addition to the case example we will be discussing the advantages and disadvantages for using the healthcare matrix and its potential utility in palliative care.

  3. Palliative care and prehospital emergency medicine: analysis of a case series.

    PubMed

    Carron, Pierre-Nicolas; Dami, Fabrice; Diawara, Fatoumata; Hurst, Samia; Hugli, Olivier

    2014-11-01

    Palliative care, which is intended to keep patients at home as long as possible, is increasingly proposed for patients who live at home, with their family, or in retirement homes. Although their condition is expected to have a lethal evolution, the patients-or more often their families or entourages-are sometimes confronted with sudden situations of respiratory distress, convulsions, hemorrhage, coma, anxiety, or pain. Prehospital emergency services are therefore often confronted with palliative care situations, situations in which medical teams are not skilled and therefore frequently feel awkward.We conducted a retrospective study about cases of palliative care situations that were managed by prehospital emergency physicians (EPs) over a period of 8 months in 2012, in the urban region of Lausanne in the State of Vaud, Switzerland.The prehospital EPs managed 1586 prehospital emergencies during the study period. We report 4 situations of respiratory distress or neurological disorders in advanced cancer patients, highlighting end-of-life and palliative care situations that may be encountered by prehospital emergency services.The similarity of the cases, the reasons leading to the involvement of prehospital EPs, and the ethical dilemma illustrated by these situations are discussed. These situations highlight the need for more formal education in palliative care for EPs and prehospital emergency teams, and the need to fully communicate the planning and implementation of palliative care with patients and patients' family members.

  4. Quality palliative care for cancer and dementia in five European countries: some common challenges

    PubMed Central

    Davies, Nathan; Maio, Laura; van Riet Paap, Jasper; Mariani, Elena; Jaspers, Birgit; Sommerbakk, Ragni; Grammatico, Daniela; Manthorpe, Jill; Ahmedzai, Sam; Vernooij-Dassen, Myrra; Iliffe, Steve

    2013-01-01

    Objectives There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. PMID:24131061

  5. Progress in palliative care in Israel: comparative mapping and next steps

    PubMed Central

    2012-01-01

    Palliative care was established rapidly in some countries, while in other countries its establishment has taken a different trajectory. This paper identifies core steps in developing a medical specialty and examines those taken by Israel as compared with the US and England for palliative care. It considers the next steps Israel may take. Palliative care aims to provide quality of life for those with serious illnesses by attending to the illness-prompted physical, mental, social, and spiritual needs of patients and their families. It has ancient roots in medicine; its modern iteration began against the backdrop of new cures and life-sustaining technology which challenged conceptions of how to respect the sanctity of life. The first modern hospice was created by Saunders; it provided proof that palliative care works, and this has occurred in Israel as well (the first step). Another key step is usually skills development among clinicians; in Israel, few education and training opportunities exist so far. Specialty recognition also has not yet occurred in Israel. Service development remains limited and a major shortage of services exists, compared to the US. Research capacity in Israel is also limited. Policy to develop and sustain palliative care in Israel is underway; in 2009, the Ministry of Health established policy for implementing palliative care. However, it still lacks a financially viable infrastructure. We conclude that palliative care in Israel is emerging but has far to go. Adequate resource allocation, educational guidelines, credentialed manpower and specialty leadership are the key factors that palliative care development in Israel needs. PMID:22913773

  6. Children’s palliative care now! Highlights from the second ICPCN conference on children’s palliative care, 18–21 May 2016, Buenos Aires, Argentina

    PubMed Central

    Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J

    2016-01-01

    The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’ emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children’s palliative care, and hidden aspects of children’s palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children’s palliative care, genetics, perinatal and neonatal palliative care, the impact of children’s palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children’s palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The ‘Big Debate’ explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children’s palliative care and participants were continually challenged to ensure that children can access palliative care NOW.

  7. Children’s palliative care now! Highlights from the second ICPCN conference on children’s palliative care, 18–21 May 2016, Buenos Aires, Argentina

    PubMed Central

    Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J

    2016-01-01

    The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’ emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children’s palliative care, and hidden aspects of children’s palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children’s palliative care, genetics, perinatal and neonatal palliative care, the impact of children’s palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children’s palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The ‘Big Debate’ explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children’s palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193

  8. Children's palliative care now! Highlights from the second ICPCN conference on children's palliative care, 18-21 May 2016, Buenos Aires, Argentina.

    PubMed

    Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J

    2016-01-01

    The International Children's Palliative Care Network held its second international conference on children's palliative care in Buenos Aires, Argentina, from the 18th-21st May 2016. The theme of the conference was 'Children's Palliative Care…. Now!' emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children's palliative care, and hidden aspects of children's palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children's palliative care, genetics, perinatal and neonatal palliative care, the impact of children's palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children's palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The 'Big Debate' explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children's palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193

  9. Pediatric palliative care and pediatric medical ethics: opportunities and challenges.

    PubMed

    Feudtner, Chris; Nathanson, Pamela G

    2014-02-01

    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. Vietnam: integrating palliative care into HIV/AIDS and cancer care.

    PubMed

    Krakauer, Eric L; Ngoc, Nguyen Thi Minh; Green, Kimberly; Van Kham, Le; Khue, Luong Ngoc

    2007-05-01

    Vietnam is struggling to meet the growing need for both disease-modifying and palliative care for people with life-threatening chronic diseases such as HIV/AIDS and cancer. Recently, Vietnam initiated rapid development of a national palliative care program for HIV/AIDS and cancer patients that builds on existing palliative care programs and experience and integrates palliative care into standard HIV/AIDS and cancer care. National palliative care guidelines have been issued by the Ministry of Health based on a rapid situation analysis. Plans now call for review and revision of opioid laws and regulations to increase availability of opioids for medical use, training in palliative care for clinicians throughout the country, and development of palliative care programs both in the community and in inpatient referral centers. PMID:17482051

  11. [Palliative Care for Non-cancer Patients].

    PubMed

    Ikegaki, Junichi

    2016-03-01

    Although palliative care has been developed and implemented as care for cancer pain, it is holistic care for suffering that includes physical, psychosocial and spiritual pain of life-threatening illness. It turned out that non-cancer patients in the end-stage are also suffering from various pain that should be treated as cancer patients. Trajectories of illness in non-cancer patients are with more gradual decline than those of cancer patients with steady progression and it is often difficult to make decision about end-of-life. The purpose of advance care planning was originally to help describe legal documents. This process is proved to contribute to improving QOL of patients and their families to discuss preference, hope, economic problems, spiritual question as well as medical treatment In Japan guideline of decision making process in end-of-life stage has been established. A program of communication training in end-of-life discussion has been made. Under current situation some comments on the role of anesthesiologists are also mentioned. PMID:27097506

  12. Social workers' use of spiritual practices in palliative care.

    PubMed

    Dane, Barbara; Moore, Robert

    2005-01-01

    Numerous studies have examined client use of spiritual and/or religious practices to cope with illness and adversity. This study explores social workers' use of spiritual practices as reflected in their work with palliative care clients. Survey results (n = 327) indicated significant relationships of spiritual practices such as yoga, prayer and meditation to working with palliative care clients. The total number of these approaches is predicted by factors such as theoretical orientation and the social workers' own struggles with palliative care and other issues. Our study supports the need for additional investigation of spiritual issues in practice.

  13. [Palliative care: an example of Comparative Effectiveness Research?].

    PubMed

    Schmacke, Norbert

    2012-01-01

    Comparative Effectiveness Research (CER) seeks to establish treatment objectives and concepts striving to achieve patient relevant progress in therapy on the basis of published evidence. Using the example of palliative medicine and palliative care, respectively, it will be demonstrated that these two are under-researched areas of care. In addition, it will become clear that the success of this interdisciplinary treatment concept for the seriously ill must be weighed in the light of traditional clinical research - far beyond the cancer diagnosis. The current distinction between curative and palliative research and care urgently needs to be reconsidered.

  14. Improving the evidence base in palliative care to inform practice and policy: thinking outside the box.

    PubMed

    Aoun, Samar M; Nekolaichuk, Cheryl

    2014-12-01

    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. PMID:24727305

  15. Research methodologies in palliative care: a bibliometric analysis.

    PubMed

    Payne, S A; Turner, J M

    2008-06-01

    The aspiration to design and conduct high-quality research in palliative care has been an important but elusive goal. The article evaluates the nature of research methodologies presented in published research within the broad remit of palliative care. A systematic search of the Medline database between 1997 and 2006, using the keywords 'palliative care' or 'end-of-life care' and 'research methodology', identified over 318 publications. A bibliometric analysis indicates an incremental increase in published outputs per year, from 27 countries, with articles widely distributed across 108 journals. The heterogeneity of the research methodologies and the journals publishing them, present challenges in defining what constitutes 'high quality'. We argue that although this diversity leads to a lack of coherence for a single disciplinary paradigm for palliative care, there is a greater acknowledgement of the differing epistemological and theoretical frameworks used by researchers. This could be regarded as enriching our understanding of what it means to be dying in contemporary society.

  16. Utility and Potential of Bedside Ultrasound in Palliative Care

    PubMed Central

    Dhamija, Ekta; Thulkar, Sanjay; Bhatnagar, Sushma

    2015-01-01

    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. PMID:26009664

  17. When patients are stressed, in pain, suggest palliative care.

    PubMed

    2016-06-01

    Case managers are in a good position to recognize patients who have serious medical problems that are causing them and their family members stress, and refer them for a palliative care consultation, experts say. The palliative care team coordinates with the team providing medical care and helps control pain and other physical symptoms, relieves depression and anxiety, and provides support and spiritual help for the patient and family. The core palliative care team typically includes a medical specialist, a nurse who also acts as a case manager, a social worker, and a spiritual counselor. Palliative care improves outcomes and patient satisfaction when patients have a consultation early in the stay or even in the emergency department. PMID:27323510

  18. Role of radiation therapy in palliative care of the patient with cancer.

    PubMed

    Lutz, Stephen T; Jones, Joshua; Chow, Edward

    2014-09-10

    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.

  19. Designing Clinically Valuable Telehealth Resources: Processes to Develop a Community-Based Palliative Care Prototype

    PubMed Central

    Morgan, Deidre Diane; Swetenham, Kate; To, Timothy Hong Man; Currow, David Christopher

    2014-01-01

    Background Changing population demography and patterns of disease are increasing demands on the health system. Telehealth is seen as providing a mechanism to support community-based care, thus reducing pressure on hospital services and supporting consumer preferences for care in the home. Objective This study examined the processes involved in developing a prototype telehealth intervention to support palliative care patients involved with a palliative care service living in the community. Methods The challenges and considerations in developing the palliative care telehealth prototype were reviewed against the Center for eHealth Research (CeHRes) framework, a telehealth development model. The project activities to develop the prototype were specifically mapped against the model’s first four phases: multidisciplinary project management, contextual inquiry, value specification, and design. This project has been developed as part of the Telehealth in the Home: Aged and Palliative Care in South Australia initiative. Results Significant issues were identified and subsequently addressed during concept and prototype development. The CeHRes approach highlighted the implicit diversity in views and opinions among participants and stakeholders and enabled issues to be considered, resolved, and incorporated during design through continuous engagement. Conclusions The CeHRes model provided a mechanism that facilitated “better” solutions in the development of the palliative care prototype by addressing the inherent but potentially unrecognized differences in values and beliefs of participants. This collaboration enabled greater interaction and exchange among participants resulting in a more useful and clinically valuable telehealth prototype. PMID:25189279

  20. [Successful intervention of a Palliative Liaison Service in case of ethical conflicts].

    PubMed

    Hannesschläger, Heinz; Kopp, Martin; Holzner, Bernhard

    2006-05-01

    In multiprofessional teams, the processes underlying ethical decisions in Palliative Care often become complicated and could cause many conflicts. Different interests and ethical positions often slow down the necessary decision-making. The lack of resources, lack of managerial structures and deficits in competence and education make the situation more difficult. We demonstrated in our case report that an established Palliative Liaison Service could support the creation of consensual decisions by forming multiprofessional ethic round-ups.

  1. Palliative and Curative Care Nurses' Attitudes Toward Dying and Death in the Hospital Setting.

    ERIC Educational Resources Information Center

    Thompson, Edward H.

    1986-01-01

    Examined sociodemographic background, nursing unit, amount of experience caring for dying patients, death anxiety, and attitudes toward working with dying patients among 56 nurses in palliative, surgical, and pediatric services. Work setting was found to be a more significant force in shaping attitudes toward caring for the dying than was…

  2. Dutch perspectives on palliative care in the Netherlands.

    PubMed

    Cohen-Almagor, Raphael

    2002-01-01

    This study reports data gathered via extensive interviews with some of the leading authorities on the euthanasia policy that were conducted in the Netherlands. They were asked: It has been argued that the policy and practice of euthanasia in the Netherlands is the result of undeveloped palliative care. What do you think? I also mentioned the fact that there are only a few hospices in the Netherlands. The responses were different and contradictory. Many interviewees agreed with the statement. Almost all of those agreeing with it said that only during the late 1990s were people beginning to admit that there was a need to improve palliative care. Some interviewees insisted that doctors first need to explore other options for helping the patient prior to choosing the course of euthanasia. Other interviewees thought that palliative care is well developed in the Netherlands and that euthanasia has actually paved the way for calling more attention to palliative care. PMID:12479156

  3. [Ethical challenge in palliative support of intensive care patients].

    PubMed

    Salomon, Fred

    2015-01-01

    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.

  4. Early Palliative Care Improves Patients' Quality of Life

    MedlinePlus

    ... 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 ...

  5. Retroperitoneal Endodermal Sinus Tumor Patient with Palliative Care Needs

    PubMed Central

    Kashyap, Surbhi

    2016-01-01

    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 PMID:26962288

  6. Surveying Community Nursing Support for Persons with an Intellectual Disability and Palliative Care Needs

    ERIC Educational Resources Information Center

    Bailey, Maria; Doody, Owen; Lyons, Rosemary

    2016-01-01

    Palliative care services have developed over the years to support all persons with life-limiting conditions. Moreover, services for people with an intellectual disability have moved from the traditional institutional setting to supporting people with an intellectual disability to live in their own community and family home. The expansion of…

  7. Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review.

    PubMed

    Hearn, J; Higginson, I J

    1998-09-01

    The objective of the study was to determine whether teams providing specialist palliative care improve the health outcomes of patients with advanced cancer and their families or carers when compared to conventional services. The study involved a systematic literature review of published research. The source of the data included studies identified from a systematic search of computerized databases (Medline, psychINFO, CINAHL and BIDS to the end of 1996), hand-searching specialist palliative care journals, and studying bibliographies and reference lists. The inclusion criteria for articles were that the study considered the use of specialist palliative care teams caring for patients with advanced cancer. Articles were assessed and data extracted and synthesized, with studies graded according to design. A variety of outcomes were considered by the authors. These addressed aspects of symptom control, patient and family or carer satisfaction, health care utilization and cost, place of death, psychosocial indices and quality of life. Overall, 18 relevant studies were identified, including five randomized controlled trials. Improved outcomes were seen in the amount of time spent at home by patients, satisfaction by both patients and their carers, symptom control, a reduction in the number of inpatient hospital days, a reduction in overall cost, and the patients' likelihood of dying where they wished to for those receiving specialist care from a multiprofessional palliative care team. It was concluded that all evaluations were of services considered to be leading the field, or were pioneering training and treatments. However, when compared to conventional care, there is evidence that specialist teams in palliative care improve satisfaction and identify and deal with more patient and family needs. Moreover, multiprofessional approaches to palliative care reduce the overall cost of care by reducing the amount of time patients spend in acute hospital settings.

  8. Chronic pain management as a barrier to pediatric palliative care.

    PubMed

    Thompson, Lindsay A; Meinert, Elizabeth; Baker, Kimberly; Knapp, Caprice

    2013-12-01

    Pain is common as a presenting complaint to outpatient and emergency departments for children, yet pain management represents one of the children's largest unmet needs. A child may present with acute pain for an intermittent issue or may have acute or chronic pain in the setting of chronic illness. The mainstay of treatment for pain uses a stepwise approach for pain management, such as set up by the World Health Organization. For children with life-limiting illnesses, the Institute of Medicine guidelines recommends referral upon diagnosis for palliative care, meaning that the child receives comprehensive services that include pain control in coordination with curative therapies; yet barriers remain. From the provider perspective, pain can be better addressed through a careful assessment of one's own knowledge, skills, and attitudes. The key components of pain management in children are multimodal, regardless of the cause of the pain. PMID:23329083

  9. Chronic pain management as a barrier to pediatric palliative care.

    PubMed

    Thompson, Lindsay A; Meinert, Elizabeth; Baker, Kimberly; Knapp, Caprice

    2013-12-01

    Pain is common as a presenting complaint to outpatient and emergency departments for children, yet pain management represents one of the children's largest unmet needs. A child may present with acute pain for an intermittent issue or may have acute or chronic pain in the setting of chronic illness. The mainstay of treatment for pain uses a stepwise approach for pain management, such as set up by the World Health Organization. For children with life-limiting illnesses, the Institute of Medicine guidelines recommends referral upon diagnosis for palliative care, meaning that the child receives comprehensive services that include pain control in coordination with curative therapies; yet barriers remain. From the provider perspective, pain can be better addressed through a careful assessment of one's own knowledge, skills, and attitudes. The key components of pain management in children are multimodal, regardless of the cause of the pain.

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

    PubMed Central

    Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil

    2012-01-01

    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. PMID:22203878

  11. Human nature: a foundation for palliative care.

    PubMed

    Whelton, Beverly J B

    2008-04-01

    The Aristotelian-Thomist philosopher holds that human intellectual knowledge is possible because of the order in the world and natural human capacities. It is the position of this paper that there is a shared human form or nature that unites all humanity as members of the same kind. Moral treatment is due to every human being because they are human, and is not based upon expression of abilities. Humans have substantial dynamic existence in the world, an existence which overflows in expressive relationships. As both patient and health professional are human, human nature forms the natural foundation of health care. This paper looks towards human nature for moral guidance. The therapeutic relationship is seen as a part of the interpersonal moral space formed by human relationality, which tends towards community - in this case, the healthcare system. The therapeutic relationship is also a source of moral responsibility, as illness makes the patient vulnerable, while knowledge and nursing capacities generate in the nurse a duty to care. Nursing theory serves to connect philosophical reflection and nursing practice. Imogene King's conceptual system and theory of Goal Attainment is the theory that follows from the perspective of human person being presented. This synthesis of philosophy and theory is developed with the goal of shedding light on healthcare decisions in palliative care. The article concludes with the acknowledgement that the complexity of contextualized individual decisions requires the insight and discipline of the moral practitioner, and provides some thoughts on how education, development, and refinement transform an individual into a nurse. PMID:18336705

  12. Palliative Home Care: A Designer’s Perspective

    PubMed Central

    Bhatnagar, Tigmanshu

    2015-01-01

    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. PMID:26009683

  13. The Madison Clinic: Evaluation of a collaborative outpatient paediatric palliative care clinic

    PubMed Central

    Siden, Harold; Straatman, Lynn; Miller, Tanice; Ham, Jennifer

    2009-01-01

    BACKGROUND A multidisciplinary outpatient clinic at a tertiary care children’s hospital supported and staffed by a children’s hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format. METHOD The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis. RESULTS In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic. DISCUSSION A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program. PMID:20592973

  14. Circles of care: should community development redefine the practice of palliative care?

    PubMed

    Abel, Julian; Walter, Tony; Carey, Lindsay B; Rosenberg, John; Noonan, Kerrie; Horsfall, Debbie; Leonard, Rosemary; Rumbold, Bruce; Morris, Deborah

    2013-12-01

    Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

  15. [Palliative care in Primary Care: presentation of a case].

    PubMed

    Álvarez-Cordovés, M M; Mirpuri-Mirpuri, P G; Gonzalez-Losada, J; Chávez-Díaz, B

    2013-10-01

    We present a case of a patient diagnosed with glioblastoma multiforme refractory to treatment. Glioblastoma multiforme is the most common primary brain tumour and unfortunately the most aggressive, with an estimated mortality of about 90% in the first year after diagnosis. In our case the patient had reached a stage of life where quality of life was importsnt, with palliative care being the only recourse. The family is the mainstay in the provision of care of terminally ill patients, and without their active participation it would be difficult to achieve the objectives in patient care. We must also consider the family of the terminally ill in our care aim, as its members will experience a series of changes that will affect multiple areas where we should take action.

  16. Mapping the progress and impacts of public health approaches to palliative care: a scoping review protocol

    PubMed Central

    Archibald, Daryll; Patterson, Rebecca; Haraldsdottir, Erna; Hazelwood, Mark; Fife, Shirley; Murray, Scott A

    2016-01-01

    Introduction Public health palliative care is a term that can be used to encompass a variety of approaches that involve working with communities to improve people's experience of death, dying and bereavement. Recently, public health palliative care approaches have gained recognition and momentum within UK health policy and palliative care services. There is general consensus that public health palliative care approaches can complement and go beyond the scope of formal service models of palliative care. However, there is no clarity about how these approaches can be undertaken in practice or how evidence can be gathered relating to their effectiveness. Here we outline a scoping review protocol that will systematically map and categorise the variety of activities and programmes that could be classified under the umbrella term ‘public health palliative care’ and highlight the impact of these activities where measured. Methods and analysis This review will be guided by Arksey and O'Malley's scoping review methodology and incorporate insights from more recent innovations in scoping review methodology. Sensitive searches of 9 electronic databases from 1999 to 2016 will be supplemented by grey literature searches. Eligible studies will be screened independently by two reviewers using a data charting tool developed for this scoping review. Ethics and dissemination This scoping review will undertake a secondary analysis of data already collected and does not require ethical approval. The results will facilitate better understanding of the practical application of public health approaches to palliative care, the impacts these activities can have and how to build the evidence base for this work in future. The results will be disseminated through traditional academic routes such as conferences and journals and also policy and third sector seminars. PMID:27417201

  17. Palliative care for Muslims and issues before death.

    PubMed

    Gatrad, A R; Sheikh, A

    2002-11-01

    National and European directives have now enshrined within European law the requirement that healthcare professionals provide their patients with culturally appropriate and sensitive care. Although well intentioned, many health professionals find it difficult to translate these directives into practice. Barriers to providing culturally competent care include racism, institutional discrimination and gaps in our understanding of the interface between culture and health--this latter factor reflecting the lack of training in transcultural health care. In this paper, we concentrate on issues relating to the provision of palliative care near death to Muslims of South Asian origin in the UK, although much of what is said will equally be applicable to Muslims from other parts of the world. This is the first of two articles giving insights into the palliative care of Muslims. The second article 'Palliative care of Muslims and issues after death' will appear in a later issue.

  18. How and when to refer a child for specialist paediatric palliative care.

    PubMed

    Harrop, Emily; Edwards, Clare

    2013-12-01

    Specialist paediatric palliative care is a relatively new area of paediatrics, and the interface with other disciplines can occasionally pose challenges for referrers due to lack of information about the diverse services available. Although services vary on a regional basis, there are common principles which may be used to guide and support referrals. Children may be referred to palliative care services via a number of routes from community-based primary care to regional tertiary centres. Identifying those most likely to benefit from the finite resources available can be a challenge, and healthcare professional's negative attitudes to palliative care have been further identified as a potentially modifiable barrier. This article aims to clarify the role of specialist paediatric palliative care, identify who should be eligible for such care, describe the services available (including those from children's hospices) and provide a tool for assessing some of the most challenging referrals. Many of the documents referenced can be downloaded from the Together for Short Lives website, and in many cases, there is no charge.

  19. Care or custody? An evaluation of palliative care in prisons in North West England.

    PubMed

    Turner, Mary; Payne, Sheila; Barbarachild, Zephyrine

    2011-06-01

    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.

  20. Interprofessional team building in the palliative home care setting: Use of a conceptual framework to inform a pilot evaluation.

    PubMed

    Shaw, James; Kearney, Colleen; Glenns, Brenda; McKay, Sandra

    2016-01-01

    Home-based palliative care is increasingly dependent on interprofessional teams to deliver collaborative care that more adequately meets the needs of clients and families. The purpose of this pilot evaluation was to qualitatively explore the views of an interprofessional group of home care providers (occupational therapists, nurses, personal support work supervisors, community care coordinators, and a team coordinator) regarding a pilot project encouraging teamwork in interprofessional palliative home care services. We used qualitative methods, informed by an interprofessional conceptual framework, to analyse participants' accounts and provide recommendations regarding strategies for interprofessional team building in palliative home health care. Findings suggest that encouraging practitioners to share past experiences and foster common goals for palliative care are important elements of team building in interprofessional palliative care. Also, establishing a team leader who emphasises sharing power among team members and addressing the need for mutual emotional support may help to maximise interprofessional teamwork in palliative home care. These findings may be used to develop and test more comprehensive efforts to promote stronger interprofessional teamwork in palliative home health care delivery.

  1. Interprofessional team building in the palliative home care setting: Use of a conceptual framework to inform a pilot evaluation.

    PubMed

    Shaw, James; Kearney, Colleen; Glenns, Brenda; McKay, Sandra

    2016-01-01

    Home-based palliative care is increasingly dependent on interprofessional teams to deliver collaborative care that more adequately meets the needs of clients and families. The purpose of this pilot evaluation was to qualitatively explore the views of an interprofessional group of home care providers (occupational therapists, nurses, personal support work supervisors, community care coordinators, and a team coordinator) regarding a pilot project encouraging teamwork in interprofessional palliative home care services. We used qualitative methods, informed by an interprofessional conceptual framework, to analyse participants' accounts and provide recommendations regarding strategies for interprofessional team building in palliative home health care. Findings suggest that encouraging practitioners to share past experiences and foster common goals for palliative care are important elements of team building in interprofessional palliative care. Also, establishing a team leader who emphasises sharing power among team members and addressing the need for mutual emotional support may help to maximise interprofessional teamwork in palliative home care. These findings may be used to develop and test more comprehensive efforts to promote stronger interprofessional teamwork in palliative home health care delivery. PMID:27026192

  2. Exemplary care of the palliative patient: the journey shared.

    PubMed

    Perry, Beth

    2005-01-01

    Critical care involves caring for complex and acute needs of patients with life-threatening conditions. Despite skilful interventions, there are times when the care needed by patients and their families is primarily palliative. In this article, the author focuses on examples of ways nurses can make the palliative care they provide exemplary. Based on findings of a research study of outstanding palliative care nurses, the researcher describes the possible effect providing excellent palliative care may have on both the patient and the caregiver. Critical care nurses are often called to stand in the shadow of grief that accompanies death. Yet in doing so, these caregivers can be molded into more caring and compassionate people, and more exemplary nurses. Nurses in critical care are challenged daily to meet the multiple needs of patients and their families. Though state of the art technology, medications and advanced skills may save many lives, there are times when the care that is required is palliative. It is in these instances that a nurse 's strength and courage may be tested. By taking up this challenge, and sharing the final journey with patients, a nurse may learn many lessons. In part, caregivers may come to see that sometimes death is neither an enemy, nor a failure. Rather, sometimes death can lead to a more joyous embracing of life. Sometimes death is the only way that suffering can be erased. This article includes a description of key ways critical care nurses may address the needs of patients who are palliative. Specifically, the themes of helping people live on, individualizing care, defending human dignity, sensitive listening, sharing hope, and keeping the promise to never abandon are described. These themes all fall under the overarching theme of simple gestures, which is also described in this report. PMID:17725264

  3. Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association.

    PubMed

    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

    2016-09-13

    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.

  4. Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association.

    PubMed

    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

    2016-09-13

    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. PMID:27503067

  5. The role and significance of nurses in managing transitions to palliative care: a qualitative study

    PubMed Central

    Kirby, Emma; Broom, Alex; Good, Phillip

    2014-01-01

    Objectives Nurses are generally present, and often influential, in supporting patient and family acceptance of medical futility and in assisting doctors in negotiating referral to palliative care. Yet the specificities of the nursing role and how nurses may contribute to timely and effective referrals is not well understood. This study aimed to systematically explore hospital-based nurses’ accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions. Design Qualitative study using semistructured interviews. Setting Two health services with public as well as private clinical environments in a major metropolitan area of Australia. Participants Hospital-based nurses (n=20) who regularly work with patients at the point of referral and in managing transitions to palliative care. Results Four significant themes emerged from thematic analysis. These include: (1) professional dynamics and the roles played by nurses in initiating the transition to palliative care; (2) the value of nurses’ informal interactions in timely and effective transitions; (3) the emerging challenge of managing task-oriented nursing versus intense emotional nursing work at the point of medical futility and (4) the emotional burden experienced by nurses within this clinical context. Nurses self-reported occupying critical albeit complex roles in the management of medical futility and the transition to palliative care. They reported experiencing significant emotional burden in balancing interpersonal and interprofessional relationships during this time. Conclusions The results suggest that nurses may be utilised in a more formalised and systematic fashion in the context of managing medical futility and the need to topicalise the transition, with the focus shifted away from medical referrals towards more team-based and patient-centred timely transitions. Further research focused on the experiences of doctors, allied health

  6. Integrating palliative care in the out-of-hospital setting: four things to jump-start an EMS-palliative care initiative.

    PubMed

    Lamba, Sangeeta; Schmidt, Terri A; Chan, Garrett K; Todd, Knox H; Grudzen, Corita R; Weissman, David E; Quest, Tammie E

    2013-01-01

    Emergency medical service (EMS) is frequently called to care for a seriously ill patient with a life-threatening or life-limiting illness. The seriously ill include both the acutely injured patients (for example in mass casualty events) and those who suffer from advanced stages of a chronic disease (for example severe malignant pain). EMS therefore plays an important role in delivering realistic, appropriate, and timely care that is consistent with the patient's wishes and in treating distressing symptoms in those who are seriously ill. The purpose of this article is to; 1) review four case scenarios that relate to palliative care and may be commonly encountered in the out-of-hospital setting and 2) provide a road map by suggesting four things to do to start an EMS-palliative care initiative in order to optimize out-of-hospital care of the seriously ill and increase preparedness of EMS providers in these difficult situations. PMID:23968313

  7. Palliative care and dementia--A time and place?

    PubMed

    Kydd, Angela; Sharp, Barbara

    2016-02-01

    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. PMID:26586105

  8. Palliative care and dementia--A time and place?

    PubMed

    Kydd, Angela; Sharp, Barbara

    2016-02-01

    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.

  9. Developing targets for public health initiatives to improve palliative care

    PubMed Central

    2010-01-01

    Background Palliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim of this study was to develop the first targets for public health initiatives to improve palliative care in Germany. Methods Based on the findings from pilot studies (qualitative interviews and surveys with different stakeholders in the health care system), we conducted a modified Delphi study with two rounds of questionnaires with experts in public health and palliative care. In the first round, the experts commented on the findings from the pilot studies. The answers were evaluated descriptively and with qualitative content analysis, resulting in the formulation of 25 targets. These were presented to the experts in the second Delphi round to assess each of them separately with regard to its importance and current implementation (7-point answer scales) and in relation to the other targets (defining the five most important of the 25 targets). Results Six most relevant targets for public health initiatives to improve palliative care in Germany were worked out: Supporting palliative care as a basic attitude for the care of people in the last phase of life; coordinating healthcare for people in the last phase of life; establishing cooperation among health professions and disciplines; establishing education in palliative care for all professional groups with contact to people in the last phase of life; reviewing the evidence of palliative care measures; offering support to family members who are caring for someone in the last phase of life. Conclusions To systematically develop palliative care, it makes sense to define fields of action with individual targets. For

  10. Palliative Care in Enugu, Nigeria: Challenges to a New Practice

    PubMed Central

    Onyeka, Tonia C

    2011-01-01

    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. PMID:21976853

  11. Integrating Pediatric Palliative Care into the School and Community.

    PubMed

    Davis, Kathleen G

    2016-10-01

    Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with peers, including school, places of worship, sports, activities, and organizations. Partnerships between PPC professionals in health care settings and teachers, coaches, spiritual leaders, activity directors, and others, may lead to greater health and well-being. Children near the end of life or those with out-of-hospital do-not-resuscitate orders may also find palliation in their community. Cooperation between all caregivers benefit the child and family. PMID:27565367

  12. Palliative Care: The Relief You Need When You're Experiencing Symptoms of Serious Illness

    MedlinePlus

    ... doctors • palliative care nurses • social workers • chaplains • pharmacists • nutritionists • counselors and others 5 Special care that supports ... including medical and nursing specialists, social workers, pharmacists, nutritionists, clergy and others. Insurance pays for palliative care. ...

  13. Improving Palliative Care Team Meetings: Structure, Inclusion, and "Team Care".

    PubMed

    Brennan, Caitlin W; Kelly, Brittany; Skarf, Lara Michal; Tellem, Rotem; Dunn, Kathleen M; Poswolsky, Sheila

    2016-07-01

    Increasing demands on palliative care teams point to the need for continuous improvement to ensure teams are working collaboratively and efficiently. This quality improvement initiative focused on improving interprofessional team meeting efficiency and subsequently patient care. Meeting start and end times improved from a mean of approximately 9 and 6 minutes late in the baseline period, respectively, to a mean of 4.4 minutes late (start time) and ending early in our sustainability phase. Mean team satisfaction improved from 2.4 to 4.5 on a 5-point Likert-type scale. The improvement initiative clarified communication about patients' plans of care, thus positively impacting team members' ability to articulate goals to other professionals, patients, and families. We propose several recommendations in the form of a team meeting "toolkit." PMID:25794871

  14. Raising the standard: palliative care in nursing homes.

    PubMed

    Meier, Diane E; Lim, Betty; Carlson, Melissa D A

    2010-01-01

    More than two-thirds of long-stay nursing home residents suffer from dementia. This illness has a variable and unpredictable course that renders it a poor fit for the six-month life-expectancy requirement of the Medicare hospice benefit. Palliative care-a form of treatment that strives to match care to patient goals, relieve pain, and improve quality of life for people with chronic or life-threatening illnesses-should be the standard of practice for all elderly dementia patients in nursing homes, regardless of prognosis. Similar principles could apply to other long-term residents with underlying chronic diseases who would benefit from palliative care. Indeed, we would argue that the growing acceptance of the culture-change movement centered on elder-directed goals in nursing homes is promising evidence of the goodness-of-fit of palliative care principles in the long-term care setting.

  15. Pediatric palliative care instruction for residents: an introduction to IPPC.

    PubMed

    Carter, Brian S; Swan, Rebecca

    2012-08-01

    A 1-day training event for pediatric residents with interdisciplinary staff was held, which was modeled after the Initiative for Pediatric Palliative Care (IPPC). Training included relational communication, cultural humility, pain-symptom management, family-centered care, team problem solving, and strategic planning using didactic, small group, and plenary platforms. Two bereaved parents were co-learners and trainers. Twenty-six interdisciplinary staff participated. A positive impact was measured in new knowledge gained, value in collaborative learning with health care professionals and families, and ability to work with professionals outside participants' own unit. Confidence to advocate for improved pediatric palliative care was also noted. The IPPC curriculum is easily adapted for resident education. Incorporating family members as co-learners and teachers is valuable. Advocacy for pediatric palliative care may follow this type of experience.

  16. Implementing patient reported outcome measures (PROMs) in palliative care - users' cry for help

    PubMed Central

    2011-01-01

    Background Patient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. A variety of measures exists and is used in clinical care, audit and research. However, little is known about professionals' views using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures. Methods A web-based online survey was conducted in Europe and Africa. Professionals working in clinical care, audit and research in palliative care were invited to the survey via national palliative care associations and various databases. Invitation e-mails were sent with a link to the questionnaire. Results Overall participation rate 42% (663/1592), overall completion rate 59% (392/663). The majority of respondents were female (63.4%), mean age 46 years (SD 9). 68.1% respondents from Europe and 73.3% from Africa had experiences with outcome measures in palliative care. Non-users reported time constraints, burden, lack of training and guidance as main reasons. In clinical care/audit, assessment of patients' situation, monitoring changes and evaluation of services were main reasons for use. Choice of OMs for research was influenced by validity of the instrument in palliative care and comparability with international literature. Main problems were related to patient characteristics, staff, and outcome measures. Participants expressed the need for more guidance and training in the use of PROMs. Conclusions Professionals need more support for the use and implementation of PROMs in clinical practice and research through training and guidance in order to improve patient care. PMID:21507232

  17. Enhancing Provider Knowledge and Patient Screening for Palliative Care Needs in Chronic Multi-morbid Patients Receiving Home-based Primary Care

    PubMed Central

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

    2014-01-01

    This paper describes a pilot model to increase palliative care knowledge and collaboration among providers, and to systematically identify chronic multi-morbid homecare patients who would benefit from focused discussion of potential palliative care (PC) needs. Thirty healthcare providers from a home-based primary care team attended interdisciplinary trainings. The Palliative Performance Scale (PPS) tool was used to trigger discussions of potential palliative needs at team rounds for patients who scored below a cutoff point on the tool. PPS implementation added little burden on nurses, and triggered a discussion in 51 flagged patients. The tool successfully identified 75% of patients who died or were discharged. Screening was systematic and consistent, and resulted in targeted discussions about PC needs without generating additional burden on our palliative care consult service. This model shows promise for enhancing collaborative patient care and access to PC. PMID:24280188

  18. Specialist Pediatric Palliative Care Prescribing Practices: A Large 5-year Retrospective Audit

    PubMed Central

    Damani, Anuja; Salins, Naveen; Ghoshal, Arunangshu; Muckaden, MaryAnn

    2016-01-01

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

  19. Quality care as ethical care: a poststructural analysis of palliative and supportive district nursing care.

    PubMed

    Nagington, Maurice; Walshe, Catherine; Luker, Karen A

    2016-03-01

    Quality of care is a prominent discourse in modern health-care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse-patient-carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi-structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health-care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved.

  20. What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life?: results from a realist evaluation of new palliative care services in two English counties

    PubMed Central

    2014-01-01

    Background We evaluated end of life care services in two English counties including: coordination centres, telephone advice line, ‘Discharge in Reach’ nurses, a specialist community personal care team and community nurse educators. Elsewhere, we published findings detailing high family carer satisfaction and fewer hospital admissions, Accident and Emergency attendances and hospital deaths for service users compared to controls. The aim of this paper is to discuss what contributed to those outcomes. Methods Using realist evaluation, data collection included documentation (e.g. referral databases), 15 observations of services and interviews with 43 family carers and 105 professionals. Data were analysed using framework analysis, applying realist evaluation concepts. Findings were discussed at successive team meetings and further data was collected until team consensus was reached. Results Services ‘worked’ primarily for those with cancer with ‘fast track’ funding who were close to death. Factors contributing to success included services staffed with experienced palliative care professionals with dedicated (and sufficient) time for difficult conversations with family carers, patients and/or clinical colleagues about death and the practicalities of caring for the dying. Using their formal and informal knowledge of the local healthcare system, they accessed community resources to support homecare and delivered excellent services. This engendered confidence and reassurance for staff, family carers and patients, possibly contributing to less hospital admissions and A&E attendances and more home deaths. Conclusions With demand for 24-hour end of life care growing and care provision fragmented across health and social care boundaries, services like these that cut across organisational sectors may become more important. They offer an overview to help navigate those desiring a home death through the system. PMID:25075202

  1. The importance of measuring customer satisfaction in palliative care.

    PubMed

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

    2016-03-01

    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. Diet and Nutrition in Cancer Survivorship and Palliative Care

    PubMed Central

    Bazzan, Anthony J.; Newberg, Andrew B.; Cho, William C.; Monti, Daniel A.

    2013-01-01

    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. PMID:24288570

  3. [Current status of palliative care in medical oncology].

    PubMed

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

    2010-06-01

    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.

  4. The importance of measuring customer satisfaction in palliative care.

    PubMed

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

    2016-03-01

    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. PMID:26837318

  5. [Palliative care to adolescents with cancer: a literature review].

    PubMed

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

    2009-01-01

    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.

  6. How to design and implement palliative care public health programmes: foundation measures. An operational paper by the WHO Collaborating Centre for Public Health Palliative Care Programmes at the Catalan Institute of Oncology.

    PubMed

    Gómez-Batiste, Xavier; Stjernsward, Jan; Espinosa, Jose; Martínez-Muñoz, Marisa; Trelis, Jordi; Constante, Carles

    2013-03-01

    This paper summarises the recommendations of the WHO Collaborating Centre for Palliative Care Public Health Programmes with respect to design and implementation of palliative care national or regional public health palliative care programmes in their initial phases. We describe the elements of a programme (leadership and aims; needs and context assessment; definition of the target patients; general measures in conventional services; specialist services in different settings; sectorised networks; education and training; availability and accessibility of opioids and essential drugs; legislation; standards; budget; valuation and improvement of quality; and evaluation of results and indicators) and the specific recommendations to implement the first steps of each component. Palliative care planning needs to be systematic, inserted in all levels of the healthcare system and adapted to the cultural and organisational status of the system. Coverage for all types of patients in need, together with equity and quality, are the main aims of programmes. PMID:24644323

  7. Acceptance of dying: a discourse analysis of palliative care literature.

    PubMed

    Zimmermann, Camilla

    2012-07-01

    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. PMID:22513246

  8. In the sandbox: palliative care and hematologic malignancies.

    PubMed

    LeBlanc, Thomas W

    2014-02-01

    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?

  9. Palliative Care for a Mentally Incompetent End Stage Renal Failure Patient: Why Is It Important?

    PubMed Central

    Chan, Kwok-Ying; Yip, Terence; Sham, Mau-Kwong; Cheng, Benjamin Hon-Wai; Li, Cho-Wing; Wong, Yim-Chi; Lau, Vikki Wai-Kee

    2015-01-01

    People with intellectual disabilities are among the most disadvantaged groups in society. Here we report a mentally incompetent end stage renal failure (ESRF) patient with frequent emergency visits who made a significant improvement in symptoms control and reduction in casualty visits after introduction of renal palliative care service. Multidisciplinary approach would be useful in this case. PMID:25838954

  10. Palliative care for older people – exploring the views of doctors and nurses from different fields in Germany

    PubMed Central

    Brueckner, Torben; Schumacher, Martin; Schneider, Nils

    2009-01-01

    Background Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation. Methods In a qualitative study design, focus groups were established consisting of general practitioners, geriatricians, palliative care physicians, palliative care nurses and general nurses (a total of 29 participants). The group discussions were recorded, transcribed, coded and analysed using the methodological approach of Qualitative Description. Results Deficiencies in teamwork and conflicting role definitions between doctors and nurses and between family practitioners and medical specialists were found to be central problems affecting the provision of appropriate palliative care for older people. It was emphasized that there are great advantages to family doctors playing a leading role, as they usually have the longest contacts to the patients. However, the professional qualifications of family doctors were to some extent criticized. The general practitioners for their part criticized the increasing specialization on the field of palliative care. All groups complained that the German compensation system gives insufficient consideration to the time-consuming care of older patients, and about excessive bureaucracy. Conclusion General practitioners are the central health professionals in the delivery of palliative care for older people. They should however be encouraged to involve specialized services such as palliative care teams where necessary. With the German health care reform of 2007, a legal framework has been created that allows for this. As far as its realization is concerned, it must be ensured that the spotlight remains on the needs of the patients and not on policy conflicts and rivalries

  11. Impact of Health Awareness Campaign in Improving the Perception of the Community about Palliative Care: A Pre- and Post-intervention Study in Rural Tamil Nadu

    PubMed Central

    Chandra, Ankit; Sarkar, Sonali; Adinarayanan, S; Balajee, Karthik Laksham

    2016-01-01

    Background and Objective: The only way to provide palliative care to a huge number of people in need in India is through community participation, which can be achieved by improving the awareness of the people about palliative care. We conducted a study to assess the impact of health awareness campaign in improving the awareness of people about palliative care. Materials and Methods: This was a pre- and post-intervention study conducted in Kadaperikuppam village of Vanur Taluk in Villupuram district, Tamil Nadu. One respondent each from 145 households in the village was interviewed regarding the knowledge and attitude on palliative care before and after the health awareness campaign using a pretested questionnaire. Health awareness campaign consisted of skit, pamphlet distribution, poster presentation, giving door-to-door information, and general interaction with palliative team in the village. Results: The awareness regarding palliative care during the preintervention was nil. After the intervention, it increased to 62.8%. However, there was a decline in the attitude and the interest of the people toward palliative care. Interpretation and Conclusions: Health awareness campaigns can increase the awareness of people in the rural parts of the country about palliative care. However, to improve the attitude of the community about delivery of palliative care services, more sustained efforts are required to make them believe that palliative care can be provided by community volunteers also and not necessarily only by professionals. PMID:27803570

  12. 'Busyness' and the preclusion of quality palliative district nursing care.

    PubMed

    Nagington, Maurice; Luker, Karen; Walshe, Catherine

    2013-12-01

    Ethical care is beginning to be recognised as care that accounts for the views of those at the receiving end of care. However, in the context of palliative and supportive district nursing care, the patients' and their carers' views are seldom heard. This qualitative research study explores these views. Data were collected through semi-structured interviews with 26 patients with palliative and supportive care needs receiving district nursing care, and 13 of their carers. Participants were recruited via community nurses and hospices between September 2010 and October 2011. Post-structural discourse analysis is used to examine how discourses operate on a moral level. One discourse, 'busyness', is argued to preclude a moral form of nursing care. The discourse of friendship is presented to contrast this. Discussion explores Gallagher's 'slow ethics' and challenges the currently accepted ways of measuring to improve quality of care concluding that quality cannot be measured.

  13. Palliative care for advanced dementia in Japan: knowledge and attitudes.

    PubMed

    Nakanishi, Miharu; Miyamoto, Yuki

    This study examined factors contributing to the knowledge and attitudes of nursing home staff regarding palliative care for advanced dementia in Japan. A cross-sectional survey of 275 nurses and other care workers from 74 long-term care facilities was conducted across three prefectures in August 2014. The Japanese versions of the Questionnaire on Palliative Care for Advanced Dementia (qPAD) and Frommelt Attitudes Toward Care of the Dying scale, Form B (FATCOD-B-J) were used. Greater knowledge was exhibited among nursing home staff in facilities that established a manual for end-of-life care. Higher levels of positive attitudes were observed among nursing home staff in facilities that had established a manual and those in facilities with a physician's written opinions on end-of-life care. An organisational effort should be explored to establish end-of-life care policies among nursing home staff for advanced dementia.

  14. Cultural and religious considerations in pediatric palliative care

    PubMed Central

    WIENER, LORI; MCCONNELL, DENICE GRADY; LATELLA, LAUREN; LUDI, ERICA

    2012-01-01

    Objective A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Method Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Results Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children

  15. Physician-assisted death with limited access to palliative care.

    PubMed

    Barutta, Joaquín; Vollmann, Jochen

    2015-08-01

    Even among advocates of legalising physician-assisted death, many argue that this should be done only once palliative care has become widely available. Meanwhile, according to them, physician-assisted death should be banned. Four arguments are often presented to support this claim, which we call the argument of lack of autonomy, the argument of existing alternatives, the argument of unfair inequalities and the argument of the antagonism between physician-assisted death and palliative care. We argue that although these arguments provide strong reasons to take appropriate measures to guarantee access to good quality palliative care to everyone who needs it, they do not justify a ban on physician-assisted death until we have achieved this goal. PMID:25614156

  16. Physician-assisted death with limited access to palliative care.

    PubMed

    Barutta, Joaquín; Vollmann, Jochen

    2015-08-01

    Even among advocates of legalising physician-assisted death, many argue that this should be done only once palliative care has become widely available. Meanwhile, according to them, physician-assisted death should be banned. Four arguments are often presented to support this claim, which we call the argument of lack of autonomy, the argument of existing alternatives, the argument of unfair inequalities and the argument of the antagonism between physician-assisted death and palliative care. We argue that although these arguments provide strong reasons to take appropriate measures to guarantee access to good quality palliative care to everyone who needs it, they do not justify a ban on physician-assisted death until we have achieved this goal.

  17. The role of palliative care in population management and accountable care organizations.

    PubMed

    Smith, Grant; Bernacki, Rachelle; Block, Susan D

    2015-06-01

    By 2021, health care spending is projected to grow to 19.6% of the GDP, likely crowding out spending in other areas. The 2010 Affordable Care Act (ACA) attempts to curb health care spending by incentivizing high-value care through the creation of Accountable Care Organizations (ACOs), which assume financial risk for patient outcomes. With this financial risk, health systems creating ACOs will be motivated to pursue innovative care models that maximize the value of care. Palliative care, as an emerging field with a growing evidence base, is positioned to improve value in ACOs by increasing high-quality care and decreasing costs for the sickest patients. ACO leaders may find palliative care input valuable in optimizing high-quality patient-centered care in the accountable care environment; however, palliative care clinicians will need to adopt new models that extrapolate their direct patient care skills to population management strategies. We propose that palliative care specialists take on responsibilities for working with ACO leaders to broaden their mission for systemwide palliative care for appropriate patients by prospectively identifying patients with a high risk of death, high symptom burden, and/or significant psychosocial dysfunction, and developing targeted, "triggered" interventions to enhance patient-centered, goal-consistent, coordinated care. Developing these new population management competencies is a critical role for palliative care teams in the ACO environment.

  18. Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

    PubMed Central

    Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M

    2015-01-01

    Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears. PMID:25750863

  19. Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care

    PubMed Central

    Tuffrey-Wijne, Irene; McLaughlin, Dorry; Curfs, Leopold; Dusart, Anne; Hoenger, Catherine; McEnhill, Linda; Read, Sue; Ryan, Karen; Satgé, Daniel; Straßer, Benjamin; Westergård, Britt-Evy; Oliver, David

    2015-01-01

    Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice. PMID:26346181

  20. Collaboration between prehospital emergency medical teams and palliative care networks allows a better respect of a patient's will.

    PubMed

    Burnod, Alexis; Lenclud, Gaëlle; Ricard-Hibon, Agnès; Juvin, Philippe; Mantz, Jean; Duchateau, François-Xavier

    2012-02-01

    This study aimed to evaluate whether patient's wishes were respected by prehospital emergency medical teams after implementing collaboration and a standardized process between a community-based palliative network and the Emergency Medical Service system. Forty patients were included. In 75% of cases, the doctor of the prehospital emergency team decided in collaboration with the network's doctor according to the established procedure. This has enabled a respect of the care plan in 83% of cases. Without collaboration with the palliative care network, through the ignorance of its existence or through the wish of the prehospital emergency medical teams for taking decisions alone, the care plan was only respected in 40% of cases, P=0.025. Collaboration between prehospital emergency medical teams and community-based palliative care networks seems to enable a better respect of the care plan in the event of emergency situations affecting the patient in a palliative situation.

  1. Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions.

    PubMed

    Slomka, Jacquelyn; Prince-Paul, Maryjo; Webel, Allison; Daly, Barbara J

    2016-01-01

    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.

  2. Caring for dying children: assessing the needs of the pediatric palliative care nurse.

    PubMed

    Morgan, Darla

    2009-01-01

    Pediatric palliative nursing care, both stressful and rewarding, requires coping skills, confidence, and other attributes for successful patient care and nursing practice. Through a thorough literature review, clinical workshops, direct observations in pediatric palliative care settings, and personal nursing experience in the neonatal intensive care, pediatric intensive care, and oncology wards, this author confirmed the necessity for studies to clarify the needs of dying pediatric patients and their families, as well as the needs of nurses who provide their care. This article briefly reviews the history and current status of pediatric palliative care, describes the experiences of nurses caring for dying children, explores the impact of providing palliative care on the hospital staff, and seeks to discover possible interventions by the advanced practice nurse to influence more positive patient care and nursing staff job satisfaction and retention.

  3. Palliative care and use of animal-assisted therapy.

    PubMed

    Engelman, Suzanne R

    2013-01-01

    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.

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

    PubMed Central

    Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz

    2016-01-01

    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. PMID:27226663

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

    PubMed Central

    Glare, Paul; Miller, Jeanna; Nikolova, Tanya; Tickoo, Roma

    2011-01-01

    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 them. PMID:21966219

  6. Integrated oncology and palliative care: five years experience at the National Cancer Institute of Mexico.

    PubMed

    Allende-Pérez, Silvia; Verástegui-Avilés, Emma; Mohar-Betancourt, Alejandro; Meneses-García, Abelardo; Herrera-Gómez, Angel

    2016-04-01

    Under the national plan for addressing cancer, prevention and detection play important roles. However, the cost of treatments and late diagnosis represent a significant burden on health services. At the National Cancer Institute, more than half of patients present with tumors in advanced stages, and approximately 10% of patients seen for the first time exhibit terminal-stage malignancies, where there are no feasible cancer treatment options, and the patients are instead admitted to the hospital exclusively for palliative symptomatic management. In 2010, the National Cancer Plan began implementing a model of integrative management of palliative care in oncology that has gradually come to include symptomatic palliative care, involving ambulatory, distant and hospitalized management of patients with cancer, in its final stages and, more recently, in earlier stages. PMID:27557392

  7. Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

    PubMed

    Yu, Mo; Guerriere, Denise N; Coyte, Peter C

    2015-11-01

    In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

  8. 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

    PubMed Central

    Masel, Eva K; Kitta, Anna; Huber, Patrick; Rumpold, Tamara; Unseld, Matthias; Schur, Sophie; Porpaczy, Edit; Watzke, Herbert H

    2016-01-01

    Objective 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. Methods 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. Results 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. Conclusions 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. PMID:27389693

  9. Developing leadership in rural interprofessional palliative care teams.

    PubMed

    Hall, Pippa; Weaver, Lynda; Handfield-Jones, Richard; Bouvette, Maryse

    2008-01-01

    This project brought together community-based practitioners and academics to develop and deliver interventions designed to enhance the leadership abilities of the designated leaders of seven rural/small town-based palliative care teams. Members of these community-based teams have already gained recognition for their teams' leadership and service delivery in their communities. All of the teams had worked closely with most members of the academic team prior to this project. The team members participated in a needs assessment exercise developed by the Sisters of Charity of Ottawa Health Service and University of Ottawa academic team. Results of the needs assessment identified leadership qualities that had contributed to their success, as well as their needs to further enhance their individual leadership qualities. The team effort, however, was the most important factor contributing to the success of their work. The interventions developed to address the identified needs had to be adapted creatively through the collaborative efforts of both the community and academic teams. The educational interventions facilitated the integration of learning at the individual and community level into the busy work schedules of primary health care providers.

  10. Palliative care for patients with advance chronic kidney disease.

    PubMed

    Douglas, C A

    2014-01-01

    Over the past three decades there has been a dramatic rise in the number of patients with advanced chronic kidney disease. The fastest expanding group receiving dialysis has been the elderly. However, for those patients who are very elderly with co-morbidity, dialysis may not offer a survival advantage. Therefore, active conservative management is a growing service offered by many renal units in the UK and focuses on non-dialytic correction of fluid and electrolyes, management of renal anaemia, and assessment and management of symptoms. The five-year survival of a patient over 75 years of age starting dialysis is 20% and if a patient is over 75 years, has co-morbidity, or a poor performance status, dialysis may not offer any survival advantage. Whether a patient is managed by dialysis or by conservative management the symptom burden suffered is high. These symptoms are under-recognised and often managed poorly because of increased drug toxicity in renal failure. This complex group of patients require close working between renal, palliative care, medicine for the elderly, and community teams, to allow best quality of life and end of life care. This review describes some of the challenges in providing Advanced Care Planning for dialysis and conservatively managed patients, highlights the symptom burden of patients with advanced chronic kidney disease, and offers guidance in how to manage the symptoms effectively.

  11. Response to "The Evidence Behind Integrating Palliative Care Into Oncology Practice"
.

    PubMed

    2016-10-01

    I am writing in response to "The Evidence Behind Integrating Palliative Care Into Oncology Practice" (Dailey, 2016). I have 16 years of oncology experience and work at the University Health Systems in San Antonio, Texas. Our facility's palliative care program holds the Advanced Certification awarded by the Joint Commission, and we have dedicated inpatient beds for palliative care patients. PMID:27668363

  12. Developing cultural competence in palliative care.

    PubMed

    McGee, Paula; Johnson, Mark R D

    2014-02-01

    Increasing ethnic or cultural diversity in the population served by health-care services requires improved competence and updated provision. Both individual staff and institutions need to reflect on and prepare to meet new challenges. Three key elements-reflective self-awareness, knowledge of others, and skills in managing difference-must be developed. Recognition of diversity and a database of appropriate information are essential for both workers and management of organisations. Above all, some preparedness for continual change and learning is essential. This article provides some suggestions and examples to assist with this.

  13. A Descriptive, Retrospective Study of After-hours Calls in Hospice and Palliative Care

    PubMed Central

    Jiang, Yun; Gentry, Amanda L.; Pusateri, Margaret; Courtney, Karen L.

    2012-01-01

    Aims Few studies have described after-hours calls in hospice patient care. This retrospective study examines the timing of after-hours telephone triage services; the reasons for access to after-hours hospice and palliative care services; and the predominant nursing interventions offered in after-hours calls in hospice and palliative care. Methods A fixed coding scheme was used to code a de-identified after-hours triage phone log of all calls between July 2005 and June 2006 (n=4,434) from a Pennsylvania hospice and palliative care services organization. Descriptive statistics were used to identify call timing pattern, call reasons, and predominant nursing interventions. Results Triage services were utilized most frequently to request assistance with signs and symptoms control (25.7%), report death (17.8%), and to request a home visit (15.3%). The top nursing interventions included updating case managers or supervisors about the needs of follow-up (29.5%), coordinating home visits (20.5%), and instructing caregivers or patients on how to control new signs and symptoms (19.8%). Conclusions A better understanding of when and why patients and their family caregivers utilize after-hours hospice triage services can assist in the design of future proactive interventions to improve care, and enhance training for new and existing hospice triage nurses. PMID:22773920

  14. Reality of evidence-based practice in palliative care

    PubMed Central

    Visser, Claire; Hadley, Gina; Wee, Bee

    2015-01-01

    There has been a paradigm shift in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically significant benefits may be marginal and may not be related to clinical meaningfulness. The typical treatment vs. placebo comparison necessitated by ‘gold standard’ randomised controlled trials (RCTs) is not necessarily applicable. The 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 difficult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. This 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. The 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. PMID:26487964

  15. Research methodologies in palliative care: a bibliometric analysis.

    PubMed

    Payne, S A; Turner, J M

    2008-06-01

    The aspiration to design and conduct high-quality research in palliative care has been an important but elusive goal. The article evaluates the nature of research methodologies presented in published research within the broad remit of palliative care. A systematic search of the Medline database between 1997 and 2006, using the keywords 'palliative care' or 'end-of-life care' and 'research methodology', identified over 318 publications. A bibliometric analysis indicates an incremental increase in published outputs per year, from 27 countries, with articles widely distributed across 108 journals. The heterogeneity of the research methodologies and the journals publishing them, present challenges in defining what constitutes 'high quality'. We argue that although this diversity leads to a lack of coherence for a single disciplinary paradigm for palliative care, there is a greater acknowledgement of the differing epistemological and theoretical frameworks used by researchers. This could be regarded as enriching our understanding of what it means to be dying in contemporary society. PMID:18541637

  16. Recognizing the role of the physical body in palliative care.

    PubMed

    Bilderback, B

    1990-01-01

    A goal of hospice care is to help the terminally ill live most fully while dying. Health care professionals must appreciate the role of the physical body in palliative care. This article identifies reasons we may hold mixed views about the body's worth and discusses relationships between the body and the human symbols of earth, air, fire, and water. These relationships suggest interventions which support the mind/body/spirit integration which is beneficial for dying persons.

  17. [Palliative care network, from coordination towards the integration of players].

    PubMed

    Prudent, Joëlle

    2015-11-01

    The ageing of the population and increase in progressive chronic pathologies constitute a major challenge for society. In parallel, the array of care systems and the partitioning between the different players pose organisational and conceptual difficulties. In the face of this, a palliative care network can seize the opportunity to develop its missions to improve the care pathway for patients and make it easier for them to remain at home.

  18. Knowledge of and attitudes towards palliative care among multinational nurses in Saudi Arabia.

    PubMed

    Abudari, Gassan; Zahreddine, Hassan; Hazeim, Hassan; Assi, Mohammad Al; Emara, Sania

    2014-09-01

    Background Palliative care is not yet integrated into the health-care system in Saudi Arabia. King Faisal Specialist Hospital and Research Centre-Riyadh (KFSH&RC-Riyadh) is a tertiary care facility and regional cancer centre in Saudia Arabia with a highly multinational nursing workforce. Little is known about these nurses' knowledge of and attitudes towards palliative care. Aim To determine the palliative care knowledge and attitudes of the nursing workforce of KFSH&RC-Riyadh and any influencing factors. Method A questionnaire including demographic data, the Palliative Care Quiz for Nurses (PCQN), and Frommelt Attitude Toward Care of the Dying scale (FATCOD) was completed by 395 staff nurses from 19 countries. Results The nurses scored a mean of 111.66 out of 150 on the FATCOD scale and of 9.06 out of 20 on the PCQN. These scores indicate moderate attitudes towards but a knowledge deficit regarding palliative care. The nurses' palliative care training and years of nursing experience significantly affected the scores. The level of palliative care integration in the nurses' home countries was the most significant factor in multiple regression tests. Conclusion Palliative care integration into the health-care system of the country in which nurses train significantly influences their knowledge of and attitudes towards palliative care. Incorporating palliative care into nursing education might promote positive attitudes towards palliative care in nurses while enhancing their knowledge and skills.

  19. Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

    PubMed Central

    2010-01-01

    Background In North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored. Methods Semi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis. Results Four main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective. Conclusions Predominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country. PMID:20525166

  20. Palliative care in end-stage kidney disease.

    PubMed

    Fassett, Robert G; Robertson, Iain K; Mace, Rose; Youl, Loren; Challenor, Sarah; Bull, Rosalind

    2011-01-01

    Patients with end-stage kidney disease have significantly increased morbidity and mortality. While greater attention has been focused on advanced care planning, end-of-life decisions, conservative therapy and withdrawal from dialysis these must be supported by adequate palliative care incorporating symptom control. With the increase in the elderly, with their inherent comorbidities, accepted onto dialysis, patients, their nephrologists, families and multidisciplinary teams, are often faced with end-of-life decisions and the provision of palliative care. While dialysis may offer a better quality and quantity of life compared with conservative management, this may not always be the case; hence the patient is entitled to be well-informed of all options and potential outcomes before embarking on such therapy. They should be assured of adequate symptom control and palliative care whichever option is selected. No randomized controlled trials have been conducted in this area and only a small number of observational studies provide guidance; thus predicting which patients will have poor outcomes is problematic. Those undertaking dialysis may benefit from being fully aware of their choices between active and conservative treatment should their functional status seriously deteriorate and this should be shared with caregivers. This clarifies treatment pathways and reduces the ambiguity surrounding decision making. If conservative therapy or withdrawal from dialysis is chosen, each should be supported by palliative care. The objective of this review is to summarize published studies and evidence-based guidelines, core curricula, position statements, standards and tools in palliative care in end-stage kidney disease. PMID:21175971

  1. [Palliative care: accompanying persons at the end of life].

    PubMed

    Espinar Cid, Victoria

    2012-01-01

    The philosophy, the essence and the therapeutic goals of palliative care help the health professionals offer the patients a high quality assistance on their last stage of life. With both, a human and scientific view, it's possible to deal with the relief of suffer on all dimensions. PMID:22548665

  2. Design of a Postgraduate Course in Palliative Care.

    ERIC Educational Resources Information Center

    Adriaansen, Marian J. M.; Frederiks, Carla M. A.

    2002-01-01

    A postgraduate course on palliative nursing includes four class sessions and four peer review meetings in which students discuss case studies and assignments. The course is intended to prepare nurses for the bureaucratic, biomedical, social-therapeutic, and informal roles of terminal care. (SK)

  3. The Nurses' Knowledge and Attitudes towards the Palliative Care

    ERIC Educational Resources Information Center

    Ayed, Ahmad; Sayej, Sumaya; Harazneh, Lubna; Fashafsheh, Imad; Eqtait, Faeda

    2015-01-01

    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. When Hospice Fails: The Limits of Palliative Care.

    ERIC Educational Resources Information Center

    Logue, Barbara J.

    1994-01-01

    Examines feasibility of palliative approach for all patients, showing reasonable people may refuse even the most exemplary care for themselves or an incompetent relative. Medical realities and alleviation of pointless suffering necessitate that policymakers consider other options, including "active" euthanasia, consistent with patient autonomy and…

  5. [Palliative care: accompanying persons at the end of life].

    PubMed

    Espinar Cid, Victoria

    2012-01-01

    The philosophy, the essence and the therapeutic goals of palliative care help the health professionals offer the patients a high quality assistance on their last stage of life. With both, a human and scientific view, it's possible to deal with the relief of suffer on all dimensions.

  6. Palliative Care for Extremely Premature Infants and Their Families

    ERIC Educational Resources Information Center

    Boss, Renee D.

    2010-01-01

    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…

  7. Management of delirium in palliative care: a review.

    PubMed

    Grassi, Luigi; Caraceni, Augusto; Mitchell, Alex J; Nanni, Maria Giulia; Berardi, Maria Alejandra; Caruso, Rosangela; Riba, Michelle

    2015-03-01

    Delirium is a complex but common disorder in palliative care with a prevalence between 13 and 88 % but a particular frequency at the end of life (terminal delirium). By reviewing the most relevant studies (MEDLINE, EMBASE, PsycLit, PsycInfo, Cochrane Library), a correct assessment to make the diagnosis (e.g., DSM-5, delirium assessment tools), the identification of the possible etiological factors, and the application of multicomponent and integrated interventions were reported as the correct steps to effectively manage delirium in palliative care. In terms of medications, both conventional (e.g., haloperidol) and atypical antipsychotics (e.g., olanzapine, risperidone, quetiapine, aripiprazole) were shown to be equally effective in the treatment of delirium. No recommendation was possible in palliative care regarding the use of other drugs (e.g., α-2 receptors agonists, psychostimulants, cholinesterase inhibitors, melatonergic drugs). Non-pharmacological interventions (e.g., behavioral and educational) were also shown to be important in the management of delirium. More research is necessary to clarify how to more thoroughly manage delirium in palliative care.

  8. Transition to palliative care when transcatheter aortic valve implantation is not an option: opportunities and recommendations

    PubMed Central

    Lauck, Sandra B.; Gibson, Jennifer A.; Baumbusch, Jennifer; Carroll, Sandra L.; Achtem, Leslie; Kimel, Gil; Nordquist, Cindy; Cheung, Anson; Boone, Robert H.; Ye, Jian; Wood, David A.; Webb, John G.

    2016-01-01

    Purpose of review Transcatheter aortic valve implantation (TAVI) is the recommended treatment for most patients with symptomatic aortic stenosis at high surgical risk. However, TAVI may be clinically futile for patients who have multiple comorbidities and excessive frailty. This group benefits from transition to palliative care to maximize quality of life, improve symptoms, and ensure continuity of health services. We discuss the clinical determination of utility and futility, explore the current evidence guiding the integration of palliative care in procedure-focused cardiac programs, and outline recommendations for TAVI programs. Recent findings The determination of futility of treatment in elderly patients with aortic stenosis is challenging. There is a paucity of research available to guide best practices when TAVI is not an option. Opportunities exist to build on the evidence gained in the management of end of life and heart failure. TAVI programs and primary care providers can facilitate improved communication and processes of care to provide decision support and transition to palliative care. Summary The increased availability of transcatheter options for the management of valvular heart disease will increase the assessment of people with life-limiting conditions for whom treatment may not be an option. It is pivotal to bridge cardiac innovation and palliation to optimize patient outcomes. PMID:26716394

  9. Referring a patient and family to high-quality palliative care at the close of life: "We met a new personality... with this level of compassion and empathy".

    PubMed

    Teno, Joan M; Connor, Stephen R

    2009-02-11

    Palliative care services are increasingly available to primary care physicians for both expert consultations and services to seriously ill patients. The United States now has more than 1400 hospital-based palliative care teams and more than 4700 hospice programs. We use an illustrative case of a palliative care hospitalization and intervention for a middle-aged man with severe pain from spinal metastases to discuss 4 key questions that a primary care physician faces in caring for the seriously ill patient with difficult symptom management: (1) Should I refer a patient to a hospital-based palliative care team or to hospice services for difficult symptom management? (2) If the patient is referred to a hospital-based palliative care team, what should I, as the primary care physician, expect? (3) When should I refer to hospice services a patient initially referred to a hospital-based palliative care team? and (4) How can I choose a hospice program that will provide competent, coordinated, and compassionate patient- and family-centered care? Primary care physicians now may choose among hospice programs, and the programs may vary in their quality of care. Validated tools to measure patient and family perceptions of the quality of hospice care are now available but progress in defining and measuring the quality of hospice care is still needed before actionable information will be available to guide the choice of hospice programs for physicians and consumers.

  10. Structural Challenges of Providing Palliative Care for Patients with Breast Cancer

    PubMed Central

    Khoshnazar, Tahereh Alsadat Khoubbin; Rassouli, Maryam; Akbari, Mohammad Esmaeil; Lotfi-Kashani, Farah; Momenzadeh, Syrus; Haghighat, Shahpar; Sajjadi, Moosa

    2016-01-01

    Introduction: To establish a palliative care system (PCS) in Iran, it is necessary to identify the potential barriers. Aim: This study aims to highlight the views of stakeholders to know the challenges of providing palliative care for women with breast cancer. Materials and Methods: Semi-structured in-depth interviews are used with purposeful sampling conducted in Tehran, Iran; from January to June 2015. Twenty participants were included in the study: nine patients with breast cancer and ten health-care providers. The interviews were analyzed using qualitative directed content analysis based on Donabedian model. Data credibility was examined using the criteria of Lincoln and Guba. Results: Based on the pattern of Avedis Donabedian model, two main categories were identified: (1) palliative care services in the health system still remain undefined and (2) lack of adequate care providers. The subcategories emerged from the main categories are: (1) Inexistent home care, (2) specialized palliative care being in high demand, lack of: (a) Rehabilitation program and guidelines, (b) treatment/training protocols, (c) inefficient insurance and out-of-pocket costs, (d) patient referral system, (e) nontransparency of job description, and (f) weakness of teamwork. Discussion: The findings of the study identify views and perceptions of patients as well as the health professionals around the challenges of providing palliative care. To establish a structured PCS, we need to meet the challenges and remove perceived barriers to, including but not limited to, building up knowledge and awareness of health professionals, educating professional, and developing updated, well-defined, and standard treatment protocols, tailored to local conditions. PMID:27803569

  11. Palliative Care Psychiatry: Update on an Emerging Dimension of Psychiatric Practice

    PubMed Central

    Fairman, Nathan

    2013-01-01

    Palliative care psychiatry is an emerging subspecialty field at the intersection of Palliative Medicine and Psychiatry. The discipline brings expertise in understanding the psychosocial dimensions of human experience to the care of dying patients and support of their families. The goals of this review are (1) to briefly define palliative care and summarize the evidence for its benefits, (2) to describe the roles for psychiatry within palliative care, (3) to review recent advances in the research and practice of palliative care psychiatry, and (4) to delineate some steps ahead as this sub-field continues to develop, in terms of research, education, and systems-based practice. PMID:23794027

  12. Psychiatric Issues in Palliative Care: Assessing Mental Capacity

    PubMed Central

    Udo, Itoro; Mohammed, Zeid; Gash, Amanda

    2013-01-01

    Issues surrounding capacity to consent to or refuse treatment are increasingly receiving clinical and legal attention. Through the use of 3 case vignettes that involve different aspects of mental health care in palliative care settings, mental capacity issues are discussed. The vignettes tackle capacity in a patient with newly developed mental illness consequent to physical illness, capacity in a patient with mental illness but without delirium and capacity in a patient with known impairment of the mind. These discussions give credence to best practice position where physicians act in the best interests of their patients at all times. It is important to emphasize that capacity decisions have to be made on a case by case basis, within the remit of legal protection. This is a fundamental requirement of the Mental Capacity Act 2005, England & Wales (MCA). The later is used as the legal basis for these discussions. The psychiatric liaison service is a useful resource to provide consultation, advice and or joint assessment to clinicians encountering complex dilemmas involving decision-making capacity. PMID:25278761

  13. Cost Savings from Palliative Care Teams and Guidance for a Financially Viable Palliative Care Program

    PubMed Central

    McCarthy, Ian M; Robinson, Chessie; Huq, Sakib; Philastre, Martha; Fine, Robert L

    2015-01-01

    Objectives To quantify the cost savings of palliative care (PC) and identify differences in savings according to team structure, patient diagnosis, and timing of consult. Data Sources Hospital administrative records on all inpatient stays at five hospital campuses from January 2009 through June 2012. Study Design The analysis matched PC patients to non-PC patients (separately by discharge status) using propensity score methods. Weighted generalized linear model regressions of hospital costs were estimated for the matched groups. Data Collection Data were restricted to patients at least 18 years old with inpatient stays of between 7 and 30 days. Variables available included patient demographics, primary and secondary diagnoses, hospital costs incurred for the inpatient stay, and when/if the patient had a PC consult. Principal Findings We found overall cost savings from PC of $3,426 per patient for those dying in the hospital. No significant cost savings were found for patients discharged alive; however, significant cost savings for patients discharged alive could be achieved for certain diagnoses, PC team structures, or if consults occurred within 10 days of admission. Conclusions Appropriately selected and timed PC consults with physician and RN involvement can help ensure a financially viable PC program via cost savings to the hospital. PMID:25040226

  14. The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia

    ERIC Educational Resources Information Center

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

    2011-01-01

    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…

  15. Palliative care for people with HIV/AIDS: views of patients, carers and providers.

    PubMed

    Butters, E; Higginson, I; George, R; McCarthy, M

    1993-01-01

    This study compared the views of palliative care reported by patients, informal carers and the Community Care Team (CCT), a multidisciplinary team caring for people with late stage HIV/AIDS illness. Patients and their carers were interviewed at home, 3-4 weeks after referral to CCT. They rated nine items of the Support Team Assessment Schedule (STAS), a standardized measure of palliative care. Items included current problems such as pain and symptom control, anxiety and service needs. Satisfaction with health services was also recorded. CCT separately recorded the severity of 17 STAS items as part of a continuing audit of care. Relatively few patients (19) and carers (8) were interviewed. Main reasons for non-interview of (105) patients were: 57 too ill and 30 less than 4 weeks in care. CCT's audit showed that non-interviewed patients had significantly more severe problems for five out of 17 STAS items. Patients and CCT identified continuing problems with symptom control, pain control, patient and family anxiety, and communication from professionals. Agreement between patient, carer and CCT ratings was reasonable. Patients and CCT ratings were significantly correlated (Spearman rho = 0.66, p < 0.005). However, patients rated pain as significantly more severe than did CCT (p < 0.05, Wilcoxon Z = -2.45). All patients and seven carers rated the care given by CCT as good or excellent. There were negative comments about communication with other professionals. Studies of palliative care which rely on data gained by patient interview may be biased to include patients with fewer problems. To overcome this providers may wish to audit their care. This study indicates that the views of palliative teams are a reasonable reflection of patients' and carers' experiences, and that the STAS is a valid tool, which we hope will be useful for those wishing to audit their work.

  16. Team-based education in a palliative approach for rural nurses and unlicensed care providers.

    PubMed

    Potter, Gail; Pesut, Barbara; Hooper, Brenda Pherne; Erbacker, Lynnelle

    2015-06-01

    This article describes the preparation and delivery of an educational intervention designed to improve rural nurses and unlicensed care providers' confidence in a palliative approach to care. A palliative approach takes the principles of supportive palliative care and adapts them for application earlier in nonspecialized palliative contexts for individuals living with life-limiting chronic illness. Curriculum in a palliative approach was constructed for nurses and unlicensed care providers (care aides and home health workers) and was delivered through a workshop and monthly follow-up sessions offered through distance technology. Participants valued the joint interactive education and came away with greater appreciation for one another's contributions to care. Insights were gained into common challenges when attempting to apply a palliative approach in rural areas. Important lessons were learned about educating nurses and unlicensed care providers together, about the use of technology for this group, and about teaching the concept of a palliative approach.

  17. Motivation of Volunteers to Work in Palliative Care Setting: A Qualitative Study

    PubMed Central

    Muckaden, MA; Pandya, Sachi Sanjay

    2016-01-01

    Background: Volunteers are an integral part of the palliative care services in the Tata Memorial Hospital, Mumbai, Maharashtra, India. These volunteers are an important resource for the department. Thus, it is necessary for the department to determine what motivates these volunteers to continue to work in the setting, acknowledge them and direct efforts toward retaining them and giving them opportunities to serve to the best of their desire and abilities. Aims: The current study aimed at understanding the motivation of volunteers to work in palliative care, to identify the challenges they face and also the effect of their work on their self and relationships. Methodology: In-depth interviews were conducted using semistructured interview guide to study above mentioned aspects. Themes were identified and coding was used to analyze the data. Results: The results suggested that the basic motivation for all the volunteers to work in a palliative care setting is an inherent urge, a feeling of need to give back to the society by serving the sick and the suffering. Other motivating factors identified were team spirit, comfort shared, warm and respectful treatment by the team, satisfying nature of work, experience of cancer in the family, and aligned values and beliefs. Some intrinsic rewards mentioned by volunteers were joy of giving, personal growth, enriching experiences, and meaningful nature of work. Conclusion: The study attempted to improve opportunities of working for these volunteers. Although limited in scope, it offers insight for future research in the area of volunteerism in palliative care setup. PMID:27559267

  18. Modalities of palliative care in hospitalized patients with advanced AIDS.

    PubMed

    Vincent, I; D'Hérouville, D; Moulin, P; Bugler, C; Fraval, J; Mallet, D; Salamagne, M H; Vildé, J L; Jodelet, D; Leport, C

    2000-04-01

    This prospective multidisciplinary survey started in October 1994. The survey assessed the modalities of care of hospitalized patients with advanced AIDS in an Infectious and Tropical Diseases Unit with regards to the practices of palliative care in a Palliative Care Unit. Seventy-eight (78) AIDS patients with CD4 < or = 30/mm3 who had 102 consecutive hospitalizations were recruited. Types (symptomatic or curative) and number of drugs administered to the patients, as well as biological and radiological investigations performed were recorded. Symptoms were concomitantly assessed on a weekly basis by self-evaluation of the patients themselves and by physicians. The results showed that the practices of care were different in the two units according to the specific goals and norms of each unit. A higher density of care was delivered at the Infectious and Tropical Diseases Unit. Symptoms assessed by both patients and physicians were underestimated by physicians in frequency and in intensity. In conclusion, an integrated approach including objective and subjective criteria should enable a better adjustment of the palliative and curative therapeutic strategies in advanced AIDS. These would concomitantly take into account the wishes of the patient and the goals regarding care in the unit where the patient is hospitalized.

  19. Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study.

    PubMed

    Bensink, M E; Armfield, N R; Pinkerton, R; Irving, H; Hallahan, A R; Theodoros, D G; Russell, T; Barnett, A G; Scuffham, P A; Wootton, R

    2009-04-01

    Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment), designed to investigate the use of videotelephony with families receiving palliative care from a tertiary paediatric oncology service in Brisbane, Australia. To investigate whether providing videotelephone-based support was acceptable to these families, a 12-month non-randomised acceptability trial was completed. Seventeen palliative care families were offered access to a videotelephone support service in addition to the 24 hours 'on-call' service already offered. A 92% participation rate in this study provided some reassurance that the use of videotelephones themselves was not a factor in poor RCT participation rates. The next phase of research is to investigate the integration of videotelephone-based support from the time of diagnosis, through outpatient care and support, and for palliative care rather than for palliative care in isolation. Trial registration ACTRN 12606000311550.

  20. Help is just a phone call away: after-hours support for palliative care patients wishing to die at home.

    PubMed

    Baird-Bower, Debbie; Roach, Julie; Andrews, Morven; Onslow, Fiona; Curnin, Emma

    2016-06-01

    The 24-hour support for palliative patients is the gold standard of health care in Australia. However, in the state of Tasmania after-hours telephone support was spatially fragmented and inequitable. In 2014, hospice@HOME, a pilot programme introduced in Tasmania in that year, implemented a state-wide after-hours palliative care support service--1800HOSPICE--offering 24-hour support, 7 days a week for palliative patients, caregivers and the public. Six months of after-hours call logs in combination with additional patient data, were analysed to evaluate the use and wider implications of a state-wide after-hours palliative care support number. Family and caregivers mainly used the after-hours support to request changes to support services (25.1%), report changes in patients' overall condition (23.6%) and request acute medical assistance (16.2%). Through the use of the after-hours services by all individuals involved in the care, end-of-life patients were able to reduce ambulance contact and emergency department admission, and thereby increase their likelihood of dying at home (for patients whose preference was to die at home). Overall, 24-hour palliative care telephone support was found to be a valuable tool for all individuals involved in the care of end-of-life patients.

  1. Help is just a phone call away: after-hours support for palliative care patients wishing to die at home.

    PubMed

    Baird-Bower, Debbie; Roach, Julie; Andrews, Morven; Onslow, Fiona; Curnin, Emma

    2016-06-01

    The 24-hour support for palliative patients is the gold standard of health care in Australia. However, in the state of Tasmania after-hours telephone support was spatially fragmented and inequitable. In 2014, hospice@HOME, a pilot programme introduced in Tasmania in that year, implemented a state-wide after-hours palliative care support service--1800HOSPICE--offering 24-hour support, 7 days a week for palliative patients, caregivers and the public. Six months of after-hours call logs in combination with additional patient data, were analysed to evaluate the use and wider implications of a state-wide after-hours palliative care support number. Family and caregivers mainly used the after-hours support to request changes to support services (25.1%), report changes in patients' overall condition (23.6%) and request acute medical assistance (16.2%). Through the use of the after-hours services by all individuals involved in the care, end-of-life patients were able to reduce ambulance contact and emergency department admission, and thereby increase their likelihood of dying at home (for patients whose preference was to die at home). Overall, 24-hour palliative care telephone support was found to be a valuable tool for all individuals involved in the care of end-of-life patients. PMID:27349847

  2. Implementing Palliative Care Interdisciplinary Teams: Consultative Versus Integrative Models.

    PubMed

    Noreika, Danielle M; Coyne, Patrick J

    2015-09-01

    Interdisciplinary teams are at the core of intensive care unit palliative care consultation. They allow health professionals of different disciplines to collaborate in a synergistic fashion to achieve the goals of patients and their families. Interdisciplinary teams can have a variety of members depending on available resources and the goals for its function. There are multiple benefits to highly functioning teams, as well as challenges that may be faced when trying to provide patient care in a team-based setting. Interdisciplinary teams of different structures may provide the ideal support for complex cases in critical care settings.

  3. Renal supportive care and palliative care: revision and proposal in kidney replacement therapy.

    PubMed

    Leiva-Santos, Juan P; Sánchez-Hernández, Rosa; García-Llana, Helena; Fernández-Reyes, M José; Heras-Benito, Manuel; Molina-Ordas, Álvaro; Rodríguez, Astrid; Álvarez-Ude, Fernando

    2012-01-01

    Patients with chronic kidney disease may receive sustained renal supportive care and renal palliative care (RPC) starting with the diagnosis of the disease, throughout the various stages of renal replacement therapy (RRT), the cessation of the RRT, and in the decision of whether to provide conservative treatment or non-initiation of RRT. This article reviews the literature on the development of renal palliative care and proposed RPC models. We describe the progression of disease in organ failure, which is very different from other areas of palliative care (PC). We describe important components of resident nephrology training in PC. We discuss the management of pain and symptom control, as well as communication skills and other psychological and ethical aspects in the renal patient. We conclude that in chronic renal patients, a palliative care approach can provide a positive impact on the quality of life of patients and their families, as well as optimizing the complex treatment of the renal patient.

  4. Philosophizing social justice in rural palliative care: Hayek's moral stone?

    PubMed

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

    2012-01-01

    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.

  5. Good enough death: autonomy and choice in Australian palliative care.

    PubMed

    McNamara, Beverley

    2004-03-01

    This paper draws upon Australian fieldwork to trace the changing notions of a good death held by hospice and palliative care practitioners. Palliative care practitioners search for an ideology to inform their practice within the context of a complex society for which there is no one good death. Social demographics, the multicultural nature of society and institutional constraints frame the experience of dying in complex ways, while contemporary social responses to dying reflect the uncertainties held by many Australians. Despite the fragmentation evident within contemporary Australian society, the hospice movement in Australia and in other Western contexts has sought to reintroduce a ritual for dying. The good death ideology of the original hospice movement proposed a manner of dying in which open communication and acceptance of death were actively encouraged. The hospice model of a good death, however, has become increasingly inappropriate in the current climate of patient autonomy and consumer choice. The practice of palliative care, a holistic form of care for dying people, which follows the individualistic ethic of choice, has emerged from and replaced the original hospice movement. Consequently, the good death of the original hospice movement has been abandoned in favour of a philosophy of a 'good enough' death. However, what may appear a compromise informed by ethical practice masks a return to routine medical practices and a hierarchy of care which prioritises the physical management of symptoms. It appears that while palliative care practitioners may often fail in their facilitation of a good death for their patients, they can be proactive in alleviating their patients' pain and physical discomfort.

  6. Palliative and end of life care for people living with dementia in care homes: part 1.

    PubMed

    Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne

    2016-06-22

    The terms palliative and end of life care are often used interchangeably and healthcare practitioners may perceive that palliative care is only appropriate during the terminal stages of an illness. This article, the first of two parts, provides healthcare practitioners with an overview of the concept of palliative care. It explains how this can be differentiated from end of life care and how it should be commenced in a timely manner, so that people who are living with dementia can contribute to the planning of their future care and death. The policies and tools used in the provision of palliative and end of life care are discussed, including advance care planning and The Gold Standards Framework. The article is framed in a care home context; there is little research about how to optimise palliative care for people living with dementia in care homes. The second part of this article will discuss end of life care and the best practices for providing end of life care, including nutrition and hydration, oral hygiene, pain management and spiritual care. PMID:27332611

  7. Equity of use of specialist palliative care by age: cross-sectional study of lung cancer patients.

    PubMed

    Burt, Jenni; Plant, Hilary; Omar, Rumana; Raine, Rosalind

    2010-09-01

    The equitable provision of care is a core principle of the National Health Service. Previous research has suggested that older cancer patients may be less likely to use specialist palliative care, but such research has been limited by retrospective design and the failure to measure clinical need. The objective of this study was to examine the extent to which the use of specialist palliative care in lung cancer patients varies by age, after accounting for need. A cross-sectional survey of patients and their carers attending four hospital lung cancer clinics in London was conducted between June 2006 and April 2007. Two hundred and fifty-two patients and 137 carers participated in the study. Thirty-nine percent of participants received specialist palliative care. Metastatic disease, global quality of life and the clinic where treatment was provided were associated with use of specialist palliative care. Age, gender, deprivation, living alone, current or most recent line of treatment, number of co-morbidities and carer stress were not associated with receipt of such services. This suggests that, for patients within the specialist cancer care system, access to specialist palliative care is offered on the basis of need. PMID:20395355

  8. Palliative care by family physicians in the 1990s. Resilience amid reform.

    PubMed Central

    Burge, F.; McIntyre, P.; Twohig, P.; Cummings, I.; Kaufman, D.; Frager, G.; Pollett, A.

    2001-01-01

    OBJECTIVE: To explore issues family physicians face in providing community-based palliative care to their patients in the context of a changing health care system. DESIGN: Focus groups. SETTING: Small (< 10,000 population), medium-sized (10,000 to 50,000), and large (> 50,000) communities in Nova Scotia. PARTICIPANTS: Twenty-five men and women physicians with varying years of practice experience in both solo and group practices. METHOD: A semistructured approach was used, asking physicians to reflect on recent palliative care experiences in order to explore issues of care. MAIN FINDINGS: Five themes emerged from the discussions: resources needed, availability of family support, time and money supporting physicians' activities, symptom control for patients, and physicians' emotional reactions to caring for dying patients. CONCLUSION: With downsizing of hospitals and greater emphasis on community-based care, the issues identified in this study will need attention, particularly in designing an integrated service delivery model for palliative care. PMID:11723593

  9. Palliative cancer care in Middle Eastern countries: accomplishments and challenges †

    PubMed Central

    Silbermann, M.; Arnaout, M.; Daher, M.; Nestoros, S.; Pitsillides, B.; Charalambous, H.; Gultekin, M.; Fahmi, R.; Mostafa, K.A.H.; Khleif, A.D.; Manasrah, N.; Oberman, A.

    2012-01-01

    Background In larger parts of the Middle East palliative care is still misunderstood among health professionals, cancer patients and the public at large. One reason to that is because the term does not obviously communicate the intent of this clinical discipline, which is lending better quality of life while combating cancer. Further, culture, tradition and religion have contributed to this misgiving and confusion especially at the terminal stage of the disease. Methods The Middle East Cancer Consortium jointly with the American Society of Clinical Oncology, the American Oncology Nursing Society, the San Diego Hospice Center for Palliative Medicine and the Children's Hospital & Clinics of Minnesota initiated a series of training courses and workshops in the Middle East to provide updated training to physicians, nurses, social workers and psychologists from throughout the region with basic concepts of palliative care and pain managements in adults and children cancers. Results During the past 6 years hundreds of professionals took part in these educational and training activities, thereby creating the core of trained caregivers who start to make the change in their individual countries. Conclusions The outcome of consecutive training activities can overcome geopolitical instabilities, and yield a genuine change in approach of both regulators, medical administrators, medical staff and the public; as to the important contribution of palliative care services to the welfare of the patient and his/her family. PMID:22628412

  10. 'My dreams are shuttered down and it hurts lots’–a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda

    PubMed Central

    2013-01-01

    Background Despite the huge burden of HIV in sub-Saharan Africa, there is little evidence of the multidimensional needs of patients with HIV infection to inform the person-centred care across physical, psychological, social and spiritual domains stipulated in policy guidance. We aimed to describe the problems experienced by people with HIV in Kenya and Uganda and the management of these problems by HIV outpatient services. Methods Local researchers conducted in depth qualitative interviews with HIV patients, caregivers and service staff at 12 HIV outpatient facilities (6 in Kenya, 6 in Uganda). Interview data were analysed thematically. Results 189 people were interviewed (83 patients, 47 caregivers, 59 staff). The impact of pain and symptoms and their causes (HIV, comorbidities, treatment side-effects) were described. Staff reported that effective pain relief was not always available, particularly in Kenya. Psychosocial distress (isolation, loneliness, worry) was exacerbated by stigma and poverty, and detrimentally affected adherence. Illness led to despair and hopelessness. Provision of counselling was reported, but spiritual support appeared to be less common. Neither pain nor psychosocial problems were routinely reported to service staff. Collaboration with local hospices and income-generation activities for patients were highlighted as useful. Conclusions The findings demonstrate the multiple and interrelated problems associated with living with HIV and how psychosocial and spiritual distress can contribute to 'total pain’ in this population. In line with the palliative care approach, HIV care requires holistic care and assessment that take into account psychological, socioeconomic and spiritual distress alongside improved access to pain-relieving drugs, including opioids. PMID:24098941

  11. More than trivial: strategies for using humor in palliative care.

    PubMed

    Dean, Ruth Anne Kinsman; Gregory, David M

    2005-01-01

    Humor and laughter are ubiquitous in human interactions. Terminal illness, however, is often accompanied by circumstances of anxiety, fear, and sadness. Hospice/palliative care emphasizes quality of life and the importance of human relationships. In this context, humor finds its place in authentic person-to-person connectedness. This article presents findings from a clinical ethnography that investigated the phenomena of humor and laughter in an inpatient palliative care unit. As a participant observer, the lead author accompanied 6 nurses throughout their day-to-day activities, twice weekly over 12 weeks. In addition to more than 200 hours of fieldwork, informal conversations were held with patients and families and semistructured interviews were conducted with nurses (n = 11), physicians (n = 2), a social worker (n = 1), and a physiotherapist (n = 1). Humor was pervasive, varied in the setting, and occurred across a range of intensities. Both clients and team members used humor to build relationships, contend with circumstances, and express sensibilities. Humor was affected by differences in people, differing circumstances, ethnicity, gender, and degree of stress. Participants relied on intuition as well as a constellation of other factors in discerning whether or not to use humor. Techniques for assessment included identification of cues such as expression in the eyes and timing as indications of receptivity. Combined with caring and sensitivity, humor is a powerful therapeutic asset in hospice/palliative care. It must neither be taken for granted nor considered trivial. PMID:16046892

  12. The impact of volunteering in hospice palliative care.

    PubMed

    Claxton-Oldfield, Stephen; Claxton-Oldfield, Jane

    2007-01-01

    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. PMID:17895491

  13. Top 10 Tips About the Physician Quality Reporting System for Palliative Care Professionals.

    PubMed

    Bull, Janet; Kamal, Arif H; Jones, Christopher; Bonsignore, Lindsay; Acevedo, Jean

    2016-08-01

    The U.S. healthcare system is shifting from a fee-for-service (FFS) system to a valued-based reimbursement system focused on improving the quality of healthcare. The Centers for Medicare and Medicaid Services (CMS) implemented the Physician Quality Reporting System (PQRS) as an important component of this transition. All clinicians, including physicians, nurse practitioners, or physician assistants who bill to Medicare Part B FFS, should submit quality data to the PQRS in 2015 or they will receive up to a 4% negative reimbursement penalty in 2017. As implementing and reporting PQRS measures can be a daunting task, especially for palliative care professionals, this article provides high priority tips identified by the authors for PQRS reporting in the palliative care field.

  14. Evaluation of A Novel Information-Sharing Instrument for Home-Based Palliative Care

    PubMed Central

    Sawada, Koichiro; Shimada, Masanari; Kadoya, Shinichi; Endo, Naoki; Ishiguro, Kaname; Takashima, Rumi; Amemiya, Yoko; Fujikawa, Yasunaga; Ikezaki, Tomoaki; Takeuchi, Miyako; Kitazawa, Hidenori; Iida, Hiroyuki; Koseki, Shiro; Morita, Tatsuya; Sasaki, Koji; Kashii, Tatsuhiko; Murakami, Nozomu

    2015-01-01

    Aim: To examine the feasibility and usefulness of a novel region-based pathway: the Regional Referral Clinical Pathway for Home-Based Palliative Care. Method: This was a feasibility study to evaluate the frequency of variances and the perceived usefulness of pathway using in-depth interviews. All patients with cancer referred to the palliative care team between 2011 and 2013 and received home care services were enrolled. Result: A total of 44 patients were analyzed, and pathway was completed in all the patients. The target outcome was achieved in 61.4% while some variances occurred in 54.5%. Nine categories were identified as the usefulness of the pathway, such as reviewing and sharing information and promoting communication, education, motivation, and relationships. Conclusion: This novel pathway is feasible and seems to be useful. PMID:24814723

  15. Trappings of technology: casting palliative care nursing as legal relations.

    PubMed

    Larsen, Ann-Claire

    2012-12-01

    Community palliative care nurses in Perth have joined the throng of healthcare workers relying on personal digital assistants (PDAs) to store, access and send client information in 'real time'. This paper is guided by Heidegger's approach to technologies and Habermas' insights into the role of law in administering social welfare programs to reveal how new ethical and legal understandings regarding patient information add to nursing's professional responsibilities. This qualitative research interprets data from interviews with twenty community palliative care nurses about clients' legal rights to informational privacy and confidentiality. It explores nurses' views of their nursing responsibilities regarding clients' legal rights, liability issues, bureaucratic monitoring and enforcement procedures. It concludes that nurses and clients are construed as legal subjects entrenched in legal relations that have magnified since these nurses began using PDAs in 2005/2006.

  16. Intimate Partner Violence in an Outpatient Palliative Care Setting

    PubMed Central

    Wygant, Carmella; Bruera, Eduardo; Hui, David

    2013-01-01

    Although a few studies have evaluated intimate partner violence (IPV) in the oncology setting, to our knowledge no studies exist of IPV among palliative care patients. IPV may be exacerbated at the end of life because patients and their caregivers often experience significant stressors associated with physical, emotional, social, and financial burdens. We discuss IPV in the palliative care setting using the example of a patient with advanced cancer who experienced IPV. A better understanding and awareness of IPV at the end of life could help clinicians support and counsel patients and ameliorate the suffering caused by this “unspoken” trauma. We further discuss 1) the prevalence and indicators of IPV, 2) how to initiate conversations about IPV, 3) the resources available to clinicians, and 4) various management strategies. PMID:23948161

  17. Future care planning: a first step to palliative care for all patients with advanced heart disease.

    PubMed

    Denvir, M A; Murray, S A; Boyd, K J

    2015-07-01

    Palliative care is recommended for patients with end-stage heart failure with several recent, randomised trials showing improvements in symptoms and quality of life and more studies underway. Future care planning provides a framework for discussing a range of palliative care problems with patients and their families. This approach can be introduced at any time during the patient's journey of care and ideally well in advance of end-of-life care. Future care planning is applicable to a wide range of patients with advanced heart disease and could be delivered systematically by cardiology teams at the time of an unplanned hospital admission, akin to cardiac rehabilitation for myocardial infarction. Integrating cardiology care and palliative care can benefit many patients with advanced heart disease at increased risk of death or hospitalisation. Larger, randomised trials are needed to assess the impact on patient outcomes and experiences.

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

    PubMed Central

    Müller, Jakob; Frick, Eckhard; Petersen, Yvonne; Mauer, Christine

    2013-01-01

    The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper. PMID:24319482

  19. Attachment theory and spirituality: two threads converging in palliative care?

    PubMed

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

    2013-01-01

    The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.

  20. Providing Palliative Care to LGBTQ Patients.

    PubMed

    Barrett, Nina; Wholihan, Dorothy

    2016-09-01

    Nurses should be familiar with and equipped to address the challenges that arise when caring for lesbian, gay, bisexual, transgender, or queer-identified (LGBTQ) patients. LGBTQ individuals have increased rates of certain physical diseases and are at greater risk of suffering from stress-sensitive mental health issues. Negative social attitudes, widespread discrimination and stigma, physical and psychological victimization, and less social support with aging contribute to the complexity of care for these individuals. Open communication, welcoming and accepting attitudes and environments, and sensitivity to unique multidimensional issues improve care to LGBTQ patients with serious advanced illness. Nursing can reach this vulnerable minority and positively impact the quality of care. PMID:27497022

  1. Supportive and Palliative Care Research | Division of Cancer Prevention

    Cancer.gov

    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.

  2. Palliative care curriculum for speech-language pathology students.

    PubMed

    Mathisen, Bernice; Yates, Patsy; Crofts, Penny

    2011-01-01

    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.

  3. Negotiating the equivocality of palliative care: a grounded theory of team communicative processes in inpatient medicine.

    PubMed

    Ledford, Christy J W; Canzona, Mollie Rose; Cafferty, Lauren A; Kalish, Virginia B

    2016-01-01

    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.

  4. Enhancing Palliative Care for Low-Income Elders with Chronic Disease: Feasibility of a Hospice Consultation Model

    PubMed Central

    Kramer, Betty J.; Cleary, Jim; Mahoney, Jane E.

    2013-01-01

    Challenges exist in assimilating palliative care within community based services for nursing home eligible low-income elders with complex chronic illness as they approach the end of life. This study assessed the feasibility of a consultation model, with hospice clinicians working with three Care Wisconsin Partnership Program teams. Consults occurred primarily during team meetings and also informally and on joint patient visits and were primarily with the palliative care nurse addressing physical issues. 57% of consultant recommendations were implemented. Benefits of consultation were identified with focus groups of clinical staff as were opportunities and barriers to the implementation. Models of integration are proposed. PMID:25494931

  5. Palliative care concept gives patients another option.

    PubMed

    Sansovich, D

    1998-01-01

    New drug treatments with protease inhibitors and total parenteral nutrition are changing long-term care strategies. Case studies are presented of two patients with end-stage AIDS, both of whom would have been expected to die shortly. One made a strong recovery with drugs, although his prognosis had been so poor that hospice was under consideration. The other, in hospice care, was being given nutrients intravenously. Ethical concerns exist with both approaches to AIDS treatment.

  6. Integration of Early Specialist Palliative Care in Cancer Care and Patient Related Outcomes: A Critical Review of Evidence

    PubMed Central

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

    2016-01-01

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

  7. Needs assessments in palliative care: an appraisal of definitions and approaches used.

    PubMed

    Higginson, Irene J; Hart, Sam; Koffman, Jonathan; Selman, Lucy; Harding, Richard

    2007-05-01

    We report a systematic appraisal of definitions and approaches to needs assessment in palliative care. Electronic databases were searched, and relevant individuals and organizations were contacted to identify needs assessments in palliative care. Over 200 articles were identified giving general information on needs assessment, and 77 articles comprised palliative care-related needs assessment reports. The reports originated from Africa (37), Australia (1), Europe (including former central/eastern European states) (35), USA (1), Latin America (5), and Asia (7). Two underpinning definitions of need were identified, that of Maslow from the field of psychology, and that of Bradshaw from sociology. However, in conducting needs assessments, these definitions were operationalized, and here the National Health Service Executive definition of need as "the ability to benefit from health care" is helpful. We identified three main categories of approach to needs assessment--epidemiological, corporate, and comparative--that can be used in combination. Careful consideration must be paid to any needs assessment data to ensure that the assessment is implemented.

  8. Needs assessments in palliative care: an appraisal of definitions and approaches used.

    PubMed

    Higginson, Irene J; Hart, Sam; Koffman, Jonathan; Selman, Lucy; Harding, Richard

    2007-05-01

    We report a systematic appraisal of definitions and approaches to needs assessment in palliative care. Electronic databases were searched, and relevant individuals and organizations were contacted to identify needs assessments in palliative care. Over 200 articles were identified giving general information on needs assessment, and 77 articles comprised palliative care-related needs assessment reports. The reports originated from Africa (37), Australia (1), Europe (including former central/eastern European states) (35), USA (1), Latin America (5), and Asia (7). Two underpinning definitions of need were identified, that of Maslow from the field of psychology, and that of Bradshaw from sociology. However, in conducting needs assessments, these definitions were operationalized, and here the National Health Service Executive definition of need as "the ability to benefit from health care" is helpful. We identified three main categories of approach to needs assessment--epidemiological, corporate, and comparative--that can be used in combination. Careful consideration must be paid to any needs assessment data to ensure that the assessment is implemented. PMID:17482037

  9. Attitudes toward palliative care, conceptions of euthanasia and opinions about its legalization among French physicians.

    PubMed

    Peretti-Watel, P; Bendiane, M K; Moatti, J P

    2005-04-01

    We assume that actors of the professionalization process of palliative care make a special effort to demarcate it from euthanasia, and that such an effort has a significant impact on beliefs and attitudes toward euthanasia among the whole medical profession. We investigated concurrently attitudes toward palliative care, conceptions of euthanasia and opinion toward its legalization among a sample of 883 French general practitioners, oncologists and neurologists. We found four contrasted profiles of attitudes toward palliative care, which were closely correlated with being in touch with palliative care providers. Attitudes toward palliative care were closely correlated with beliefs about which medical practices should be labelled euthanasia, and these beliefs were in turn strongly associated with opinions toward euthanasia legalization. Our results suggest that the relationship between palliative care and euthanasia mixes semantic and strategic aspects, beyond cognitive and conative ones. PMID:15686809

  10. Palliative care for patients with end-stage liver disease.

    PubMed

    Larson, Anne M

    2015-05-01

    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.

  11. [Palliative Care for Neurological Intractable Diseases and Home Medical Support].

    PubMed

    Yokoyama, Kazumasa; Ogino, Mieko; Ishigaki, Yasunori; Hattori, Nobutaka

    2015-08-01

    Many medical doctors regard the end stage and palliative care of neurological intractable diseases as the point at which aggressive treatment should be interrupted and death is imminent. However, the definition of health by the World Health Organization as the physical, psychological, and social goal to achieve a fully favorable health condition should be revisited. In the real clinical setting, the health condition, as the ability to adapt and self-manage in the face of social, physical, and emotional challenges with the aim to overcome stress (resilience), is dynamic and involves a healthy condition and satisfaction with one's own living. The most important step in palliative therapy that is shared by neurologists is the maintenance of the health status with the help of multi-disciplinary team with the view to improving the quality of life. PMID:26241362

  12. Integrating Palliative Care into the Care of Neurocritically Ill Patients: A Report from The IPAL-ICU (Improving Palliative Care in the Intensive Care Unit) Project Advisory Board and the Center to Advance Palliative Care

    PubMed Central

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

    2015-01-01

    Objectives To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; To discuss key prognostic aids and their limitations for neurocritical illnesses; To review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; To describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. Data Sources A search of Pubmed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term “palliative care,” “supportive care,” “end-of-life care,” “withdrawal of life-sustaining therapy,” “limitation of life support,” “prognosis,” or “goals of care” together with “neurocritical care,” “neurointensive care,” “neurological,” “stroke,” “subarachnoid hemorrhage,” “intracerebral hemorrhage,” or “brain injury.” Data Extraction and Synthesis We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert Advisory Board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. Conclusions Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support, will

  13. Perceptions of palliative care among patients with advanced cancer and their caregivers

    PubMed Central

    Zimmermann, Camilla; Swami, Nadia; Krzyzanowska, Monika; Leighl, Natasha; Rydall, Anne; Rodin, Gary; Tannock, Ian; Hannon, Breffni

    2016-01-01

    Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful. PMID:27091801

  14. Early palliative care and metastatic non-small cell lung cancer: potential mechanisms of prolonged survival.

    PubMed

    Irwin, Kelly E; Greer, Joseph A; Khatib, Jude; Temel, Jennifer S; Pirl, William F

    2013-02-01

    Patients with advanced cancer experience a significant burden of physical symptoms and psychological distress at the end of life, and many elect to receive aggressive cancer-directed therapy. The goal of palliative care is to relieve suffering and promote quality of life (QOL) for patients and families. Traditionally, both the public and medical community have conceptualized the need for patients to make a choice between pursuing curative therapy or receiving palliative care. However, practice guidelines from the World Health Organization and leadership from the oncology and palliative care communities advocate a different model of palliative care that is introduced from the point of diagnosis of life-threatening illness. Early palliative care has been shown to provide benefits in QOL, mood, and health care utilization. Additionally, preliminary research has suggested that in contrast to fears about palliative care hastening death, referral to palliative care earlier in the course of illness may have the potential to lengthen survival, particularly in patients with advanced nonsmall-cell lung cancer. This review summarizes the literature on potential survival benefits of palliative care and presents a model of how early integrated palliative care could potentially influence survival in patients with advanced cancer. PMID:23355404

  15. Position Statement: Palliative Care for Children.

    ERIC Educational Resources Information Center

    Death Studies, 1993

    1993-01-01

    Notes that International Work Group on Death, Dying, and Bereavement recognizes wide variation of attitudes, beliefs, and behaviors pertaining to childhood death, dying, and bereavement. Statement identifies set of assumptions which can serve as guidelines, across cultures, in care of children with terminal illness and their families. (Author/NB)

  16. Palliative Care Education in Nurse Practitioner Programs: A Survey of Academic Deans.

    PubMed

    Jensen-Seaman, Kari; Hebert, Randy S

    2016-01-01

    The need for clinicians trained in palliative care will increase as more Americans live with life-limiting illness. Although multiple studies have described the nature of palliative care education in prelicensure programs, there have been no similar studies of nurse practitioner programs. We surveyed 101 nurse practitioner programs. Most programs provide little instruction in palliative care; education is often limited to a few hours of lecture. One-third of programs offer no instruction. Although palliative care is an important component of advanced practice nursing practice, programs may not be providing adequate education.

  17. Organization position statements and the stance of "studied neutrality" on euthanasia in palliative care.

    PubMed

    Johnstone, Megan-Jane

    2012-12-01

    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.

  18. Q-methodology: a systematic approach to assessing learners in palliative care education.

    PubMed

    Gaebler-Uhing, Charlene

    2003-06-01

    Q-methodology is a qualitative research method that has increasingly been used to identify the complex attributes and behaviors that impact learning within medicine. Because learners bring a lifetime of experiences, values, and beliefs to a palliative care education, this method is ideal for identifying the typology of learner's present, thus making it possible to adapt the palliative care curriculum to meet the identified needs of each subgroup of learners. A step-by-step overview of the methodology using an example from pediatric graduate medical education illustrates the process. Potential uses of Q-methodology in palliative care are outlined including its application to the assessment of affective learning competencies, before and after a palliative care curriculum. The development of a universal palliative care education Q-sample, a collection of subjective opinion statements reflecting the spectrum of opinions on the topic, would advance the use of the Q-methodology in palliative medicine education.

  19. Ethical issues in palliative care. Views of patients, families, and nonphysician staff.

    PubMed Central

    Towers, Anna; MacDonald, Neil; Wallace, Ellen

    2003-01-01

    OBJECTIVE: Much of what we know about ethical issues in palliative care comes from the perceptions of physicians and ethicists. In this study our goal was to hear other voices and to gain first-hand knowledge of the possibly contrasting views of patients, their families, nurses, volunteers, and other team members on end-of-life issues. DESIGN: Qualitative study using semistructured interviews. SETTING: Inpatient and consultation palliative care service of the Royal Victoria Hospital in Montreal, Que. PARTICIPANTS: Of 113 people interviewed, 13 were patients, 43 were family members, 32 were volunteers, 14 were nurses, and 11 were other staff. METHOD: Interviewers elicited subjects' perspectives on ethical issues. Content analysis was used to identify, code, and categorize themes in the data. MAIN FINDINGS: Communication difficulties and insufficient resources and staff were the most frequently mentioned problems in this palliative care setting. CONCLUSION: The findings of this study will help guide policy decisions and setting of educational priorities in end-of-life care, particularly regarding the importance of adequate communication. PMID:14708928

  20. Evaluating a Human Rights-Based Advocacy Approach to Expanding Access to Pain Medicines and Palliative Care: Global Advocacy and Case Studies from India, Kenya, and Ukraine.

    PubMed

    Lohman, Diederik; Amon, Joseph J

    2015-12-10

    Palliative care has been defined as care that is person-centered and attentive to physical symptoms and psychological, social, and existential distress in patients with severe or life-threatening illness. The identification of access to palliative care and pain treatment as a human rights issue first emerged among palliative care advocates, physicians, and lawyers in the 1990s, with a basis in the right to health and the right to be free from cruel, inhuman, and degrading treatment. Using a case study approach, we evaluate the results of a human rights-based advocacy approach on access to pain medicine and palliative care in India, Kenya, and Ukraine. In each country, human rights advocacy helped raise awareness of the issue, identify structural barriers to care, define government obligations, and contribute to the reform of laws, policies, and practices impeding the availability of palliative care services. In addition, advocacy efforts stimulated civil society engagement and high-level political leadership that fostered the implementation of human rights-based palliative care programs. Globally, access to palliative care was increasingly recognized by human rights bodies and within global health and drug policy organizations as a government obligation central to the right to health.

  1. 77 FR 76053 - Proposed Collection; Comment Request; Pediatric Palliative Care Campaign Pilot Survey

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-12-26

    ... Care Campaign Pilot Survey Summary: In compliance with the requirement of Section 3506(c)(2)(A) of the.... Proposed Collection: Pediatric Palliative Care Campaign Pilot Survey-0925-New-National Institute of Nursing... developed a Pediatric Palliative Care Campaign to address the communications challenges faced by health...

  2. [Resistance from caregivers and doctors to a transfer to palliative care].

    PubMed

    Azémard, Alain

    2014-04-01

    Doctors' and caregivers' knowledge, acquired experience and representation of death might favour or delay a patient's transfer to a palliative care unit. The mobile palliative care team, witnessing resistance to a transfer, is in a position to respond thanks to the multidisciplinary nature of the team and the trust established between the different players in the patient's care. PMID:24881246

  3. Family Members Providing Home-Based Palliative Care to Older Adults: The Enactment of Multiple Roles

    ERIC Educational Resources Information Center

    Clemmer, Sarah J.; Ward-Griffin, Catherine; Forbes, Dorothy

    2008-01-01

    Canadians are experiencing increased life expectancy and chronic illness requiring end-of-life care. There is limited research on the multiple roles for family members providing home-based palliative care. Based on a larger ethnographic study of client-family-provider relationships in home-based palliative care, this qualitative secondary analysis…

  4. What is the meaning of palliative care in the Asia-Pacific region?

    PubMed

    O'Connor, Margaret; O'Brien, Anthony Paul; Griffiths, Debra; Poon, Edward; Chin, Jacqueline; Payne, Sheila; Nordin, Rusli

    2010-09-01

    This paper describes the preliminary work required to understand cultural differences in palliative care in the United Kingdom and three countries in the Asia-Pacific region, in preparation for a cross-country study. The study is intended to address cultural understandings of palliative care, the role of the family in end of life care, what constitutes good care and the ethical issues in each country. Suggestions are then made to shape the scope of the study and to be considered as outcomes to improve care of the dying in these countries. It is anticipated that the method used to achieve consensus on cross-country palliative care issues will be both qualitative and quantitative. Identifying key priorities in the delivery and quality measures of palliative care will involve participants in focus groups, a Delphi survey and in the development of clinical indicators towards creating standards of palliative care common to the Asian Pacific region. PMID:20887501

  5. Using social media in supportive and palliative care research.

    PubMed

    Casañas i Comabella, Carolina; Wanat, Marta

    2015-06-01

    Difficulties relating to supportive and palliative care research are often reported. However, studies have highlighted that people near the end of life are happy to participate in research and want their voices heard. Thus, one may raise a twofold question: are we limiting the free will of people who are seriously ill? And are we missing important data, which probably cannot be obtained from other sources? In light of this landscape, a new opportunity has emerged: the use of social media (SM). This paper provides a comprehensive summary of SM, including its theoretical underpinnings, and recent examples of successful uses of SM in healthcare research. It also outlines the opportunities (wider reach, direct access, the potential of Big Data, readiness of research data, empowered participants) and challenges (anonymity of participants, digital divide, sample bias, screening and 'saying no' to participants, data analysis) of using SM in end-of-life care research. Finally, it describes the practical steps that a researcher could follow to recruit patients using SM. Implications for palliative care clinicians, researchers and policymakers are also discussed, with a focus on the need to facilitate patient-centred care through the use of SM. The need for relevant and updated guidelines in this new, emerging field is highlighted. PMID:25311211

  6. Compared to Palliative Care, Working in Intensive Care More than Doubles the Chances of Burnout: Results from a Nationwide Comparative Study

    PubMed Central

    Teixeira, Carla Margarida; Carvalho, Ana Sofia; Hernández-Marrero, Pablo

    2016-01-01

    Introduction Professionals working in intensive and palliative care units, hence caring for patients at the end-of-life, are at risk of developing burnout. Workplace conditions are determinant factors to develop this syndrome among professionals providing end-of-life care. Objectives To identify and compare burnout levels between professionals working in intensive and palliative care units; and to assess which workplace experiences are associated with burnout. Methods A nationwide, multicentre quantitative comparative survey study was conducted in Portugal using the following instruments: Maslach Burnout Inventory–Human Services Survey, Questionnaire of workplace experiences and ethical decisions, and Questionnaire of socio-demographic and professional characteristics. A total of 355 professionals from 10 intensive care and 9 palliative care units participated in the survey. A series of univariate and multivariate logistic regression analyses were performed; odds ratio sidelong with 95% confidence intervals were calculated. Results 27% of the professionals exhibited burnout. This was more frequent in intensive care units (OR = 2.525, 95% CI: 1.025–6.221, p = .006). Univariate regression analyses showed that higher burnout levels were significantly associated with conflicts, decisions to withhold/withdraw treatment, and implementing palliative sedation. When controlling for socio-demographic and educational characteristics, and setting (intensive care units versus palliative care units), higher burnout levels were significantly and positively associated with experiencing conflicts in the workplace. Having post-graduate education in intensive/palliative care was significantly but inversely associated to higher burnout levels. Conclusions Compared to palliative care, working in intensive care units more than doubled the likelihood of exhibiting burnout. Experiencing conflicts (e.g., with patients and/or families, intra and/or inter-teams) was the most significant

  7. Preliminary report of the integration of a palliative care team into an intensive care unit.

    PubMed

    O'Mahony, Sean; McHenry, Janet; Blank, Arthur E; Snow, Daniel; Eti Karakas, Serife; Santoro, Gabriella; Selwyn, Peter; Kvetan, Vladimir

    2010-03-01

    process was provided to 85% of families by the project team. Twenty-nine percent of patients were disconnected from mechanical ventilators following consultation with the Palliative Care Service (PCS), 15.9% of patients discontinued the use of inotropic support, 15.3% stopped artificial nutrition, 6.4% stopped dialysis and 2.5% discontinued artificial hydration. Recommendations on pain management were made for 51% of the project's patients and symptom management for 52% of patients. The project was associated with an increase in the rate of the formalization of advance directives. Thirty-three percent of the patients who received PCS consultations had 'do not resuscitate' orders in place prior to consultation and 83.4% had 'do not resuscitate' orders after the intervention. The project team referred 80 (51%) of the project patients to hospice and 55 (35%) patients were enrolled on hospice, primarily at the medical center. The mean time from admission to palliative care consultation at the project site was 2.8 days versus 15.5 days at the other campus (p = 0.0184). Median survival times from admission to the medical center were not significantly different when stratified by palliative care consultation status: 12 days for the control group (95% CI 8-18) and 13.5 days for the intervention group (95% CI 8-20). Median charges for the use of opioid medications were higher (p = 0.01) for the intervention group but lower for use of laboratory (p = 0.004) and radiology tests (p = 0.027). We conclude that the integration of palliative care experts into the operation of critical care units is of benefit to patients, families and critical care clinicians. Preliminary evidence suggest that such models may be associated with improved quality of life, higher rates of formalization of advance directives and utilization of hospices, as well as lower use of certain non-beneficial life-prolonging treatments for critically ill patients who are at the end of life. PMID:19825893

  8. Integration of palliative care in the context of rapid response: a report from the Improving Palliative Care in the ICU advisory board.

    PubMed

    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

    2015-02-01

    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.

  9. Paediatric palliative care: development and pilot study of a ‘Directory’ of life-limiting conditions

    PubMed Central

    2013-01-01

    Background Children’s palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes. Methods The diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007. Results 1590 diagnoses from children’s hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions. Conclusion The Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care. PMID:24330676

  10. Collaboration between a US Academic Institution and International Ministry of Health to develop a culturally appropriate palliative care navigation curriculum.

    PubMed

    Fernandes, Ritabelle; Riklon, Sheldon; Langidrik, Justina R; Williams, Shellie N; Kabua, Neiar

    2014-12-01

    Implementation lessons: (1) The development and testing of a culturally appropriate palliative care navigation curriculum for countries facing high cancer and non-communicable diseases burden requires collaboration with the local Ministry of Health. (2) Lay volunteers from non-governmental and faith-based organizations are potential candidates to provide patient navigation services. PMID:26250636

  11. 78 FR 15958 - Submission for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-13

    ... HUMAN SERVICES National Institutes of Health Submission for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey SUMMARY: Under the provisions of Section 3507(a)(1)(D) of... previously published in the Federal Register on December 26, 2012, page 76053 and allowed 60-days for...

  12. Victoria BGY palliative care model--a new model for the 1990s.

    PubMed

    Downing, G M; Braithwaite, D L; Wilde, J M

    1993-01-01

    If, as palliative care practitioners, we ensure that distressing symptoms such as pain, vomiting, dyspnea, confusion, and pre-death restlessness are fully controlled (note "fully"), then most people are deeply appreciative and continue to live until they die, confident that whatever happens, their worth, desires, and comfort are secure. Credibility (Latin, fides dignus) is remaining true and reliable to what was agreed. Patients registering with palliative care generally desire comfort, which can only occur when palliative care physicians and programs are capable and willing to apply all three types of palliation discussed here--the BGY model. PMID:7510798

  13. The temple vision in palliative care.

    PubMed

    Schneck, Linda M

    2006-01-01

    Music-thanatology draws as much historical inspiration from the Asclepian ideal as it does from the practice of Cluniac monastic medicine. In both traditions, the patient initiates the social drama and is a most active agent in the healing process. In both traditions, the patient has the central voice and is listened to and responded to by the caregivers and clinicians, who facilitate and support in the spirit of service rather than direct/control. In both traditions, we may find death-bed healing without curing and be struck by the urgent, transcendental role of Beauty, as expressed in nature (human and elemental), the arts, architecture, and music. Clearly, our guest author envisions a profound end-of-life music-thanatology clinical practice in which the well-known, empirical Hippocratic and the lesser known, sacred Asclepian are integrated into the ideals of monastic medicine. In so doing, not only are pain and suffering uniquely met, but a blessed, peace-filled or conscious transitus may occur, and each death-bed setting has the potential to become nothing less than a sanctuary for completion.

  14. [Treatment of constipation in palliative care patients is a challenge].

    PubMed

    Jarlbæk, Lene; Johnsen, Berit; Hansen, Ole Bo; Hedal, Birte

    2016-08-15

    The evidence for treatment of constipation in palliative care patients is poor. The condition of these patients is often complex, and results from studies performed in other patient groups cannot be extrapolated unconditionally. However, macrogol (polyethylene glycol), lactulose and sodium picosulphate seem to be well tolerated, and methylnaltrexone could be used in opioid-induced constipation, if the patients are not at risk from gastrointestinal perforation. The patients should be offered quiet and private surroundings, and attention should be payed to securing an optimal body position for defecation. PMID:27550785

  15. Narrative palliative care: a method for building empathy.

    PubMed

    Stanley, Patricia; Hurst, Marsha

    2011-01-01

    We make meaning of illness, suffering, and death through narrative, by telling a story. In this article, the authors explore narrative and palliative care: how, at the end of life, narratives of patients, caregivers, and clinicians serve to connect to those still living, and how through each telling and listening, we honor and validate the experience of suffering. A discussion of narrative competence and the skills of attention, representation, and affiliation is followed by an outline of the format for a narrative medicine workshop and a detailed analysis of an experiential exercise in close reading and reflective writing. PMID:21391077

  16. Provision of Palliative Care in Low- and Middle-Income Countries: Overcoming Obstacles for Effective Treatment Delivery.

    PubMed

    Hannon, Breffni; Zimmermann, Camilla; Knaul, Felicia M; Powell, Richard A; Mwangi-Powell, Faith N; Rodin, Gary

    2016-01-01

    Despite being declared a basic human right, access to adult and pediatric palliative care for millions of individuals in need in low- and middle-income countries (LMICs) continues to be limited or absent. The requirement to make palliative care available to patients with cancer is increasingly urgent because global cancer case prevalence is anticipated to double over the next two decades. Fifty percent of these cancers are expected to occur in LMICs, where mortality figures are disproportionately greater as a result of late detection of disease and insufficient access to appropriate treatment options. Notable initiatives in many LMICs have greatly improved access to palliative care. These can serve as development models for service scale-up in these regions, based on rigorous evaluation in the context of specific health systems. However, a multipronged public health approach is needed to fulfill the humane and ethical obligation to make palliative care universally available. This includes health policy that supports the integration of palliative care and investment in systems of health care delivery; changes in legislation and regulation that inappropriately restrict access to opioid medications for individuals with life-limiting illnesses; education and training of health professionals; development of a methodologically rigorous data and research base specific to LMICs that encompasses health systems and clinical care; and shifts in societal and health professional attitudes to palliative and end-of-life care. International partnerships are valuable to achieve these goals, particularly in education and research, but leadership and health systems stewardship within LMICs are critical factors that will drive and implement change. PMID:26578612

  17. Specialist Pediatric Palliative Care Referral Practices in Pediatric Oncology: A Large 5-year Retrospective Audit

    PubMed Central

    Ghoshal, Arunangshu; Salins, Naveen; Damani, Anuja; Deodhar, Jayita; Muckaden, MaryAnn

    2016-01-01

    Purpose: To audit referral practices of pediatric oncologists referred to specialist pediatric palliative care services. Patients and Methods: Retrospective review of medical case records of pediatric palliative care patients over a period of 5 years from January 1, 2010 to December 31, 2014. Descriptive summaries of demographic, clinical variables, and patient circumstances at the time of referral and during end-of-life care were examined. Results: A total of 1135 patients were referred from pediatric oncology with a gradual increasing trend over 5 years. About 84.6% consultations took place in the outpatient setting. In 97.9% of the cases, parents were the primary caregivers. Availability of specialist pediatric health-care services at local places was available in 21.2% cases and 48% families earned <5000 INR (approximately 73 USD) in a month. Around 28.3% of the referrals were from leukemia clinic and maximum references were late with 72.4% patients having advanced disease at presentation. 30.3% of the referrals were made for counseling and communication and 54.2% had high symptom burden during referral. After referral, 21.2% patients continued with oral metronomic chemotherapy and 10.5% were referred back to oncology services for palliative radiotherapy. Only 4.9% patients had more than 2 follow-ups. 90.8% of the patients were cared for at home in the last days of illness by local general practitioners. 70.6% of the deaths were anticipated. Conclusions: Oncologists referred patients late in the course of disease trajectory. Most of the referrals were made for counseling and communication, but many patients had high symptom burden during referral. PMID:27559254

  18. Ethical Challenges and Solutions Regarding Delirium Studies in Palliative Care

    PubMed Central

    Sweet, Lisa; Adamis, Dimitrios; Meagher, David; Davis, Daniel; Currow, David; Bush, Shirley H.; Barnes, Christopher; Hartwick, Michael; Agar, Meera; Simon, Jessica; Breitbart, William; MacDonald, Neil; Lawlor, Peter G.

    2014-01-01

    Context Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges. Objectives Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients. Methods Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines. Results Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models. Conclusion Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC. PMID:24388124

  19. Implementing a Palliative Care Nurse Leadership Fellowship Program in Uganda.

    PubMed

    Downing, Julia; Leng, Mhoira; Grant, Liz

    2016-05-01

    Global oncology and palliative care needs are increasing faster than the available capacity to meet these needs. This is particularly marked in sub-Saharan Africa, where healthcare capacity and systems are limited and resources are stretched. Uganda, a country of 35.6 million people in eastern Africa, faces the challenges of a high burden of communicable disease and a rising number of cases of non-communicable disease, including cancer. The vast majority of patients in Uganda are diagnosed with cancer too late for curative treatment to be an option because of factors like poor access to healthcare facilities, a lack of health education, poverty, and delays resulting from seeking local herbal or other traditional remedies. This article describes an innovative model of nurse leadership training in Uganda to improve the delivery of palliative care. The authors believe this model can be applicable to other low- and middle-income countries, where health resources are constrained and care needs are great.
. PMID:27105201

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

    SciTech Connect

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

    2010-10-01

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

  1. The palliative care movement in India: another freedom struggle or a silent revolution?

    PubMed

    Koshy, Cherian

    2009-01-01

    The message of palliative care in India has become a movement in several parts of India in a short span of time. The past two decades have seen palpable changes in the mindset of health care providers, and policy makers with respect to the urgency in providing palliative care. With a population of over a billion spread over a vast geo-political mosaic, the reach and reliability of palliative care programmes may appear staggering and insurmountable. Nonetheless we have reasons to be proud in that we have overcome several hurdles and is presently in a 'consolidation mode'. It is only a matter of time before the 'aam admi' has access to good palliative care. Easing narcotic licensing procedures, creation of standard operating procedures for morphine availability and the passing of the 'Palliative Care Policy' by the Government of Kerala are commendable milestones. We are today having more of 'silver linings' and less of 'dark clouds'.

  2. Towards a standardized method of developing quality indicators for palliative care: protocol of the Quality indicators for Palliative Care (Q-PAC) study

    PubMed Central

    2013-01-01

    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 and valid quality indicator set which can contribute to a standardized method for use in other countries. Methods and design Firstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project. Conclusion Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care. PMID:23394401

  3. Limitation to Advanced Life Support in patients admitted to intensive care unit with integrated palliative care

    PubMed Central

    Mazutti, Sandra Regina Gonzaga; Nascimento, Andréia de Fátima; Fumis, Renata Rego Lins

    2016-01-01

    Objective To estimate the incidence of limitations to Advanced Life Support in critically ill patients admitted to an intensive care unit with integrated palliative care. Methods This retrospective cohort study included patients in the palliative care program of the intensive care unit of Hospital Paulistano over 18 years of age from May 1, 2011, to January 31, 2014. The limitations to Advanced Life Support that were analyzed included do-not-resuscitate orders, mechanical ventilation, dialysis and vasoactive drugs. Central tendency measures were calculated for quantitative variables. The chi-squared test was used to compare the characteristics of patients with or without limits to Advanced Life Support, and the Wilcoxon test was used to compare length of stay after Advanced Life Support. Confidence intervals reflecting p ≤ 0.05 were considered for statistical significance. Results A total of 3,487 patients were admitted to the intensive care unit, of whom 342 were included in the palliative care program. It was observed that after entering the palliative care program, it took a median of 2 (1 - 4) days for death to occur in the intensive care unit and 4 (2 - 11) days for hospital death to occur. Many of the limitations to Advanced Life Support (42.7%) took place on the first day of hospitalization. Cardiopulmonary resuscitation (96.8%) and ventilatory support (73.6%) were the most adopted limitations. Conclusion The contribution of palliative care integrated into the intensive care unit was important for the practice of orthothanasia, i.e., the non-extension of the life of a critically ill patient by artificial means. PMID:27626949

  4. How Outpatient Palliative Care Teleconsultation Facilitates Empathic Patient-Professional Relationships: A Qualitative Study

    PubMed Central

    van Gurp, Jelle; van Selm, Martine; Vissers, Kris; van Leeuwen, Evert; Hasselaar, Jeroen

    2015-01-01

    Objective The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs). This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospital-based palliative care specialists. Methods This work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations. Results The analysis of the empirical data resulted in three key concepts that describe the impact of teleconsultation on the patient-professional relationship in palliative homecare: transcending the institutional walls of home and hospital; transparency of teleconsultation technology; and technologized, intimate patient-professional relationships. Teleconsultation offers (1) condensed encounters between home-based palliative care patients and distant professionals, (2) a unique insight into the patients’ daily lives for palliative care specialists, and (3) long-term interaction that results in trustful relationships and experiences of intimacy and relief. Conclusions Teleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computer-mediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patient’s context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily

  5. Sexuality and Life-Threatening Illness: Implications for Social Work and Palliative Care

    ERIC Educational Resources Information Center

    Cagle, John G.; Bolte, Sage

    2009-01-01

    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…

  6. The Quality of Life of Palliative Care Staff: A Personal Construct Approach.

    ERIC Educational Resources Information Center

    Viney, Linda L.; And Others

    1994-01-01

    Compared palliative care staff with staff from burn and neonatal units and with mature age general nursing trainees at end of training. Found that palliative care staff expressed better quality of life, in terms of significantly less anxiety and depression, as well as more good feelings than other staff groups. (Author/NB)

  7. Suicide Prevention: Efforts To Increase Research and Education in Palliative Care. Report to Congressional Requesters.

    ERIC Educational Resources Information Center

    General Accounting Office, Washington, DC. Health, Education, and Human Services Div.

    Currently, the extent of palliative care instruction varies considerably across and within the three major phases of the physician education and training process. This analysis of current educational efforts in palliative care is based on information obtained from a survey conducted of all United States medical schools, surveys conducted on United…

  8. The integration of early palliative care with oncology care: the time has come for a new tradition.

    PubMed

    Bauman, Jessica R; Temel, Jennifer S

    2014-12-01

    The past decade has brought forth innovative research that questions the traditional oncology care model for patients with advanced cancer. Through integrating palliative care (PC) early into the disease course for patients with a poor-prognosis cancer, 3 seminal studies showed improvements in outcomes, ranging from quality of life, mood, patient satisfaction, prognostic understanding, health service use, and possibly survival. The results of these paradigm-changing studies generate questions about the mechanisms through which early PC improves patient outcomes and about how best to disseminate early PC models. This article reviews the 3 studies, examines challenges to conducting PC research, and considers future directions in the field.

  9. Reflecting the scope and work of palliative care teams today: an action research project to modernise a national minimum data set.

    PubMed

    Jack, B A; Littlewood, C; Eve, A; Murphy, D; Khatri, A; Ellershaw, J E

    2009-01-01

    The Minimum Data Set (MDS) for UK specialist palliative care services was developed in 1995 to provide annual data on palliative care services. Data collected is used for local and national purposes including service management, monitoring and audit, the commissioning of services and the development of national policy. The emergence of Payment by Results and HealthCare Resource Groups, which will have an impact on the funding processes, together with identified limitations of the current MDS resulted in a project to revise the MDS. An action research approach was used for the project and had distinctive phases including modifying the MDS, a pilot phase and an expert panel consultation. Modifications to all the sections of the MDS and changes to terminology were made. The action research approach enabled revisions made based upon a national consensus and met the changing provision of specialist palliative care services for the UK.

  10. The power of integration: radiotherapy and global palliative care.

    PubMed

    Rodin, Danielle; Grover, Surbhi; Elmore, Shekinah N; Knaul, Felicia M; Atun, Rifat; Caulley, Lisa; Herrera, Cristian A; Jones, Joshua A; Price, Aryeh J; Munshi, Anusheel; Gandhi, Ajeet K; Shah, Chiman; Gospodarowicz, Mary

    2016-07-01

    Radiotherapy (RT) is a powerful tool for the palliation of the symptoms of advanced cancer, although access to it is limited or absent in many low- and middle-income countries (LMICs). There are multiple factors contributing to this, including assumptions about the economic feasibility of RT in LMICs, the logical challenges of building capacity to deliver it in those regions, and the lack of political support to drive change of this kind. It is encouraging that the problem of RT access has begun to be included in the global discourse on cancer control and that palliative care and RT have been incorporated into national cancer control plans in some LMICs. Further, RT twinning programs involving high- and low-resource settings have been established to improve knowledge transfer and exchange. However, without large-scale action, the consequences of limited access to RT in LMICs will become dire. The number of new cancer cases around the world is expected to double by 2030, with twice as many deaths occurring in LMICs as in high-income countries (HICs). A sustained and coordinated effort involving research, education, and advocacy is required to engage global institutions, universities, health care providers, policymakers, and private industry in the urgent need to build RT capacity and delivery in LMICs. PMID:27481320

  11. [Perinatal palliative care in France: Who? Why? How?].

    PubMed

    Tosello, B

    2016-09-01

    Severe congenital or morphologic anomalies are one of the main causes of infant morbidity and mortality. Some of these prenatally-diagnosed pathologies are incompatible with postnatal survival. In this context, some women choose to continue with pregnancy. Subsequently, perinatal palliative care seems to be a constructive answer to offer in such situations. At international level, this is a new clinical practice where decision dilemmas exist (prognostic uncertainty, prolonged survival, and attachment to the infant). It might be necessary to identify the factors that can affect these ethical tensions. With no national data, we explored the perceptions and professional practices that may influence parental requests for continuing with pregnancy, despite the uncertainty corresponding to the postnatal condition of a newborn with a lethal pathology. This exploration aims to question and debate current norms, especially in medical termination of pregnancy, discussing the dilemmas and divergences that affect decision-making and professional practices in neonatal palliative care. Reflection is also necessary on how to find an answer that can make sense within a request for continuation of pregnancy, despite the uncertainty inherent in the postnatal period in case of live birth of a newborn with a lethal abnormality. PMID:27472997

  12. Initial Experience of Head and Neck Cancer Patients Treated in an Oncologist Led Palliative Cancer Care Clinic at a Tertiary Cancer Care Center in Uttar Pradesh: Is the Initiative of a Full-fledged Palliative Care for Cancer Patients Justified

    PubMed Central

    Lal, Punita; Verma, Mranalini; Kumar, Gaurav; Shrivastava, Resham; Kumar, Shaleen

    2016-01-01

    Introduction: Poor socioeconomic status and illiteracy attribute to the advanced presentation of head and neck cancer (HNC) patients in India and are candidates for palliation in our setup. We set up a palliative cancer care clinic (PCCC), and an audit of initial 153 HNC patients is presented. Aims and Objectives: To assess the impact of palliative cancer care services. Methodology: Data of advanced HNC patients suited for palliation were collected to document demography, symptomatology, cancer treatment, and supportive care. Results: One hundred and fifty-three patients were seen during January 2013 to March 2015 in the PCCC. Seventy-two (47%) referral cases were due to disease progression and 81 (53%) due to de novo advanced cases. Median follow-up for this group was 5.3 months. Ninety (59%) cases needed some degree of assistance for their normal activities. Sixty-seven (44%) patients belonged to poor socioeconomic status and 65 (43%) were educated up to equivalent of high school. One hundred and thirty-five (88%) patients had an adequate family support. Pain was the most common presenting symptom in 134 (87%) cases with adequate relief in 112 (84%) patients with another 13 (09%) could not be assessed. Overall median duration of symptoms was 6 months. Cancer-directed therapy was used in 143 (93%) patients. Near the end of life in 47 (73%) out of 63 documented cases, caregivers were psychologically prepared for the inevitable. Conclusion: The role of palliative care team in alleviating physical, psychosocial, and emotional issues of patient and family members was significant. PCCC seems to be a feasible working model in our setup. PMID:27803571

  13. Palliative Care Education: Focusing on Care and Not Just Disease | Division of Cancer Prevention

    Cancer.gov

    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. These competencies include pain management, good communication skills, and the ability to provide patients with psychosocial and spiritual assessments and to work in interdisciplinary teams in hospitals, as well as through hospice and in nursing homes, he said. |

  14. Patients attended by palliative care teams: are they always comparable populations?

    PubMed

    Nabal, Maria; Barcons, Miquel; Moreno, Roberto; Busquets, Xavier; Trujillano, Javier J; Requena, Antonio

    2013-12-01

    , cognitive and symptomatic states. It must be pointed that the organization of palliative care services and their experience appears to condition the profile of patients they attend. There is a need of consensus on the basic descriptors for palliative care patients in order to ensure that results will be comparable.

  15. First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care.

    PubMed

    Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

    2014-01-01

    The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

  16. Factors enabling shared care with primary healthcare providers in community settings: the experiences of interdisciplinary palliative care teams.

    PubMed

    DeMiglio, Lily; Williams, Allison

    2012-01-01

    Interdisciplinary palliative care (PC) teams experience a number of barriers in their efforts to establish and maintain shared care partnerships with primary health care providers (PHCPs) in caring for patients in community settings. A qualitative study,was undertaken in southern Ontario to examine how teams negotiate barriers in order to share mutual responsibility for patients with PHCPs (i.e., family physicians and community nurses). Over a one-year period, focus group interviews (n=15) were conducted with five teams to explore their experiences to better understand the factors that enable shared care. Using a conceptual framework put forth by Williams et al. (2010), the findings reveal that teams circumvent local level barriers through four enabling factors: team characteristics, geography, adaptation of practice, and relationship building. Understanding these factors and strategies to foster them will assist other jurisdictions wanting to establish a similar shared care service delivery model. PMID:23413764

  17. A Palliative Approach to Dialysis Care: A Patient-Centered Transition to the End of Life

    PubMed Central

    Moss, Alvin H.; Cohen, Lewis M.; Fischer, Michael J.; Germain, Michael J.; Jassal, S. Vanita; Perl, Jeffrey; Weiner, Daniel E.; Mehrotra, Rajnish

    2014-01-01

    As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients’ informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach. PMID:25104274

  18. Integration of Palliative Care in End-Stage Liver Disease and Liver Transplantation

    PubMed Central

    Curry, Michael; Buss, Mary; Chittenden, Eva

    2014-01-01

    Abstract Background: Patients with end-stage liver disease (ESLD) have a life-limiting illness that causes multiple distressing symptoms and negatively affects quality of life (QOL). This population traditionally has not had much attention within the palliative care community. Discussion: This article provides an evidence-based review of palliative care issues that patients with ESLD and those awaiting liver transplant face, including approaches to prognosis, symptom management, advance care planning, and end-of-life care. Conclusion: Tremendous opportunity exists to integrate palliative medicine into the care of these patients. PMID:25390468

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

    PubMed Central

    Chung, Vincent C.H.; Wu, Xinyin; Lu, Ping; Hui, Edwin P.; Zhang, Yan; Zhang, Anthony L.; Lau, Alexander Y.L.; Zhao, Junkai; Fan, Min; Ziea, Eric T.C.; Ng, Bacon F.L.; Wong, Samuel Y.S.; Wu, Justin C.Y.

    2016-01-01

    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 combination with conventional treatments or used alone, in managing cancer-related symptoms were considered eligible. Effectiveness was quantified by using weighted mean difference (WMD) using random effect model meta-analysis. Fourteen RCTs were included. Compared with conventional intervention alone, meta-analysis showed that combined CHM and conventional treatment significantly reduced pain (3 studies, pooled WMD: −0.90, 95% CI: −1.69 to −0.11). Six trials comparing CHM with conventional medications demonstrated similar effect in reducing constipation. One RCT showed significant positive effect of CHM plus chemotherapy for managing fatigue, but not in the remaining 3 RCTs. The additional use of CHM to chemotherapy does not improve anorexia when compared to chemotherapy alone, but the result was concluded from 2 small trials only. Adverse events were infrequent and mild. CHM may be considered as an add-on to conventional care in the management of pain in cancer patients. CHM could also be considered as an alternative to conventional care for reducing constipation. Evidence on the use of CHM for treating anorexia and fatigue in cancer patients is uncertain, warranting further research. PMID:26886628

  20. Communication About Sexuality in Advanced Illness Aligns With a Palliative Care Approach to Patient-Centered Care.

    PubMed

    Leung, Margaret W; Goldfarb, Shari; Dizon, Don S

    2016-02-01

    Treatment-related sexual complications are common in cancer patients although rarely discussed in the palliative care setting. Sexuality is an important survivorship issue and remains relevant even in the terminal setting. There are multiple barriers in dialoguing about intimacy and sexual functioning from the patient and provider perspectives. Palliative care providers, while not expected to be sexual health experts, can provide comprehensive patient-centered care by including sexual health as part of their evaluation. They can explore how sexual dysfunction can impair functioning and utilize an interdisciplinary approach to manage symptoms. Palliative care providers can help patients identify their goals of care and explore what anticipated sexual changes and treat-related side effects are tolerable and intolerable to the patient's quality of life. Principles on addressing sexuality in the palliative setting and practical ways of incorporating sexual history into the palliative care assessment are provided.

  1. Communication About Sexuality in Advanced Illness Aligns With a Palliative Care Approach to Patient-Centered Care.

    PubMed

    Leung, Margaret W; Goldfarb, Shari; Dizon, Don S

    2016-02-01

    Treatment-related sexual complications are common in cancer patients although rarely discussed in the palliative care setting. Sexuality is an important survivorship issue and remains relevant even in the terminal setting. There are multiple barriers in dialoguing about intimacy and sexual functioning from the patient and provider perspectives. Palliative care providers, while not expected to be sexual health experts, can provide comprehensive patient-centered care by including sexual health as part of their evaluation. They can explore how sexual dysfunction can impair functioning and utilize an interdisciplinary approach to manage symptoms. Palliative care providers can help patients identify their goals of care and explore what anticipated sexual changes and treat-related side effects are tolerable and intolerable to the patient's quality of life. Principles on addressing sexuality in the palliative setting and practical ways of incorporating sexual history into the palliative care assessment are provided. PMID:26769116

  2. A new approach to eliciting patients' preferences for palliative day care: the choice experiment method.

    PubMed

    Douglas, Hannah-Rose; Normand, Charles E; Higginson, Irene J; Goodwin, Danielle M

    2005-05-01

    Palliative day care (PDC) provides individualized care to meet patients' needs and preferences and has posed problems for economic evaluation. Current methods are limited in their ability to capture relevant outcomes. The choice experiment elicits preferences for multiple aspects of care rather than a single outcome. A choice experiment was undertaken at four centers in England. A random effects probit model was used. Interaction terms relating to patient and service characteristics were explored. Seventy-nine patients participated. All characteristics of PDC except bathing and hairdressing were significant (P < 0.001). Access to specialist therapies was three times as important as medical support and twice as important as staying all day. Interaction terms were not significant, except for age and preference for specialist therapies, although the sample may not have been adequate to detect differences. Choice experiments provided useful insights by quantifying preferences for services, providing an alternative to cost-effectiveness analysis. PMID:15904746

  3. Parental Hopeful Patterns of Thinking, Emotions, and Pediatric Palliative Care Decisionmaking: A Prospective Cohort Study

    PubMed Central

    Feudtner, Chris; Carroll, Karen W.; Hexem, Kari R.; Silberman, Jordan; Kang, Tammy I.; Kazak, Anne E.

    2013-01-01

    Objective Test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders. Design Prospective cohort study. Setting Children's hospital and surrounding region. Participants 33 pediatric patients receiving palliative care consult services who did not have LOI orders at time of cohort entry and their 43 parental adults. Main Exposures Parental levels at time of cohort entry of hopeful patterns of thinking and emotions, in conjunction with perceptions about patients' health trajectories Main Outcome Measures Enactment of an LOI order after entry into the cohort. Results During the 6 months of observation, 14 patients had (42.4%) an LOI order enacted. In adjusted analyses, higher levels of parental hopeful patterns of thinking were significantly associated with increased odds of enactment of an LOI order [AOR 2.73; 95% CI: 1.04, 7.22]. Increased odds of LOI enactment were associated to non-significant degrees with lower levels of parental positive affect [AOR 0.44; 95% CI: 0.17, 1.12], higher levels of parental negative affect [AOR 2.02; 95% CI: 0.98, 4.16], and parental perceptions of worsening health over time [AOR 1.72; 95% CI: 0.73, 4.07]. Conclusions For pediatric patients receiving palliative care consultative services, higher levels of parents' hopeful patterns of thinking are associated with subsequent enactment of LOI orders, suggesting that emotional and cognitive processes have a combined effect on medical decisionmaking. PMID:20819965

  4. End of life care services for patients with heart failure.

    PubMed

    Charnock, Louise A

    2014-08-26

    Heart failure has high incidence and prevalence in the UK. However, access to palliative care services for patients with heart failure is inequitable. Patients with heart failure often do not receive specialist palliative care at the end of life, or referral is made only in the last days of life. This results in lost opportunities for advance care planning, psychological support for patients and families and symptom management. Prognostic tools are useful in ensuring appropriate referral. However, the controversy regarding the Liverpool Care Pathway has created uncertainty for healthcare professionals, patients and families. This article examines palliative care and end of life care services for patients with heart failure. It presents the case for service development and examines the benefits for patients who traditionally may not have had access to this care. PMID:25138875

  5. Effectiveness of eHealth Interventions and Information Needs in Palliative Care: A Systematic Literature Review

    PubMed Central

    Ganzinger, Matthias; Perez-Lu, Jose; Knaup, Petra

    2014-01-01

    Background One of the key components in palliative care is communication. eHealth technologies can be an effective way to support communications among participants in the process of palliative care. However, it is unclear to what extent information technology has been established in this field. Objective Our goal was to systematically identify studies and analyze the effectiveness of eHealth interventions in palliative care and the information needs of people involved in the palliative care process. Methods We conducted a systematic literature search using PubMed, Embase, and LILACS according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We collected and analyzed quantitative and qualitative data regarding effectiveness of eHealth interventions and users’ information needs in palliative care. Results Our search returned a total of 240 articles, 17 of which met our inclusion criteria. We found no randomized controlled trial studying the effects of eHealth interventions in palliative care. Studies tended to be observational, noncontrolled studies, and a few quasi-experimental studies. Overall there was great heterogeneity in the types of interventions and outcome assessments; some studies reported some improvement on quality of care, documentation effort, cost, and communications. The most frequently reported information need concerned pain management. Conclusions There is limited evidence around the effectiveness of eHealth interventions for palliative care patients, caregivers, and health care professionals. Focused research on information needs and high-quality clinical trials to assess their effectiveness are needed. PMID:24610324

  6. Palliative care from a medical informatics perspective in Chile, Germany, and Peru.

    PubMed

    Capurro, Daniel; Ganzinger, Matthias; Pérez-Lu, José E

    2013-01-01

    This work explores a) the use of e-health systems in the context of palliative care and b) the information needs of patients, care givers and healthcare professionals in palliative care. To achieve this we conducted a systematic literature review and interviewed health professionals in Germany, Peru, and Chile. All countries have in common that specific e-health systems are rarely used in this context and the presence of a gradient of available care between rural and urban areas.

  7. Pain Management and Symptom-Oriented Drug Therapy in Palliative Care

    PubMed Central

    Klein, Carsten; Lang, Ute; Bükki, Johannes; Sittl, Reinhard; Ostgathe, Christoph

    2011-01-01

    Summary Patients with advanced life-limiting disease often suffer from symptoms that considerably impair their quality of life and that of their families. Palliative care aims to alleviate these symptoms by a multidimensional approach. Pharmacotherapy is an essential component. The objective of this review is to give an overview of symptom-oriented drug therapy for the most important symptoms in palliative care. Leading symptoms that affect quality of life include pain, dyspnea, nausea and emesis, weakness and disorientation. Careful examination and history taking help to understand the individual mechanisms underlying these symptoms. Specific pharmacotherapy provides an efficient way to achieve symptom control in the context of palliative care. PMID:21547023

  8. Palliative care communication curriculum: what can students learn from an unfolding case?

    PubMed

    Goldsmith, Joy; Wittenberg-Lyles, Elaine; Shaunfield, Sara; Sanchez-Reilly, Sandra

    2011-06-01

    Limited attention to palliative care communication training is offered to medical students. In this work, we pursued unfolding case responses and what they indicated about student tendencies to use palliative care communication as well as what medical students can learn from their own reflective practice about palliative care. Findings showed an overwhelming trend for students to avoid palliative care communication or inclusion of topics including advance directives, place of care, family support, and dying. Instead, students relied heavily on the SPIKES protocol, communication that was strategically vague and ambiguous, and discussions that centered on specialty care and referral. In reflecting on their own case study responses, students noted an absence of direct communication about prognosis, no coordination of care, late hospice entry, and patient pain resulting from communication inefficacies. Future research should focus on the development of formal and adaptive curriculum structures to address these communication needs.

  9. Palliative care communication curriculum: what can students learn from an unfolding case?

    PubMed

    Goldsmith, Joy; Wittenberg-Lyles, Elaine; Shaunfield, Sara; Sanchez-Reilly, Sandra

    2011-06-01

    Limited attention to palliative care communication training is offered to medical students. In this work, we pursued unfolding case responses and what they indicated about student tendencies to use palliative care communication as well as what medical students can learn from their own reflective practice about palliative care. Findings showed an overwhelming trend for students to avoid palliative care communication or inclusion of topics including advance directives, place of care, family support, and dying. Instead, students relied heavily on the SPIKES protocol, communication that was strategically vague and ambiguous, and discussions that centered on specialty care and referral. In reflecting on their own case study responses, students noted an absence of direct communication about prognosis, no coordination of care, late hospice entry, and patient pain resulting from communication inefficacies. Future research should focus on the development of formal and adaptive curriculum structures to address these communication needs. PMID:21071434

  10. [Hospice palliative care is a universal value and the essence of nursing].

    PubMed

    Chao, Co-Shi Chantal

    2015-04-01

    This article uses four examples to illustrate the recent rise of hospice palliative care as a universal value. These examples include the story of Dame Cecily Saunders, the pioneer of the palliative care movement in the U.K.; the national healthcare plan currently promoted by United States' President Obama; a survey on the topic of quality of death in 40 countries conducted by the Lien Foundation (Singapore); and the story of the Hospice Movement in Taiwan. This article further describes how hospice palliative care has changed the healthcare culture and presents the World Health Organization's definition of palliative care and the implications of this definition. Additionally, this article identifies the common palliative-care mistakes that have been made by the general public and by healthcare workers. Healthcare professionals must acquire essential relevant knowledge and skills in order to ensure that hospice palliative care addresses the needs of terminally ill patients adequately. Finally, the author describes a novel approach to instilling proper palliative-care concepts and practices that is entitled Life, Peace, Care, and Honor (LPCH or the "3344" concept). PMID:25854942

  11. Smell and taste in palliative care: a systematic analysis of literature.

    PubMed

    Heckel, Maria; Stiel, Stephanie; Ostgathe, Christoph

    2015-02-01

    Little is known on the role of the senses smell and taste in end-of-life care. The presented systematic literature analysis investigates the significance of smell and taste in palliative care. The online databases PubMed, CINAHL, MEDLINE, Deutsche Nationalbibliothek and British National Library were searched for English and German literature published between 1970 and April 2013 containing any kind of original data on the impact of smell and taste in patients in a palliative care situation. All retrieved publications were screened for relevance and full text was obtained for all articles identified as relevant. We integrated 13 papers for further analysis (explorative surveys 5, clinical trials 3, case studies 2, qualitative study 1, brief report 1, clinical report 1). Prevalence of smell and taste alterations in palliative care ranges between 60 and 86%. Existing literature reflects the significance of smells and tastes in palliative care setting in two main streams--smell and taste alterations as symptoms and malodorous wounds. Prevalence of smell and taste alterations in palliative care is high. However, in palliative care literature concepts for the assessment and fostering of subjective significance of smell and taste and the individual impact of significant smells and tastes are predominantly neglected. Available instruments should be characterized, validated and adapted for the use for palliative care patients.

  12. [Key ethic discussions in hospice/palliative care].

    PubMed

    Jusić, Anica

    2008-12-01

    The goal of palliative care is to provide the best possible quality of life for patients and their families in the process of dying as well as before, during the course of illness. Emphasis is on the role of team approach in every aspect of patient care. The moral principles of sacredness of life and the right of personal autonomy may occasionally come in conflict. The basic principle of the respect of life prohibits killing, which has been accepted in one way or another by all societies - for the reasons of survival. Similar to this, modern morality supports the principle of respecting autonomy and self-management based on informed, conscious personality of an individual. Still, if the needs of another person appear to be more important or desirable than reaching certain individual goals, then the right of an individual regarding autonomy may be legitimately limited. Decisions on not applying or terminating certain procedures must be based on thorough discussion and consideration of the nature and expected result of treatment. If the patient is not competent, then the discussion should involve a team providing care for the patient and a representative of the patient. When the physician and the team can clearly see that unfavorable effects of treatment will outweigh therapeutic benefits, then, according to medical ethics of the respecting beneficiary, the team is not obliged to provide that form of treatment. Except for palliative care, there is no medical treatment that is always obligatory. A physician that does not accept the patient's request to be killed does not limit the patient's autonomy. Autonomy is self-management and capability of the patient to kill him/herself is not limited by the physician's refusal to do so. Even in those cases when patients for various reasons say that death will be a relief, it does not mean that the physician is obliged to terminate life. The superior obligation of physicians is to alleviate pain. If euthanasia would be legal

  13. Routine prescribing of gabapentin or pregabalin in supportive and palliative care: what are the comparative performances of the medications in a palliative care population?

    PubMed

    Clark, Katherine; Quinn, Stephen J; Doogue, Matthew; Sanderson, Christine; Lovell, Melanie; Currow, David C

    2015-09-01

    Neuropathic pain is a prevalent and distressing problem faced by people with life-limiting illness that is often difficult to palliate. Gabapentin and pregabalin are widely prescribed as part of the routine approach to palliating neuropathic pain. Although they are often viewed as interchangeable agents, very little comparative data of their benefits and harms exists in clinical practice. Two previously reported pharmacovigilance studies that had used the same methodology for gabapentin and pregabalin were compared. These studies examined the benefits and harms of gabapentin and pregabalin after the medications had been routinely prescribed by clinicians working in a network of palliative care services using the same data collection tools with the same definitions and the same time points. Data were collected over 21 days from 282 patients prescribed either gabapentin or pregabalin for pain. Items included medication doses, pain scores, and adverse effects. In order to compare the medication responses, the final doses of pregabalin were converted to gabapentin does equivalents using previously published recommendations. The final pain scores were similar for both groups, and the reduction in pain were similar (OR = 11.2; 95 % CI 3.9, 32.7, p < 0.001). However, this was achieved at lower doses of gabapentin compared to pregabalin. Those receiving gabapentin were more likely to experience harms (OR = 3.5; 95 % CI 1.4, 9.1, p = 0.009) with the reported harms including somnolence, ataxia, nausea, tremor and nystagmus This hypothesis-generating work strongly supports the need for further trials to best delineate clinical differences in the GABA analogues.

  14. [Personal and dignified death. The role of pastoral care in palliative medicine].

    PubMed

    Breit-Keßler, Susanne

    2016-03-01

    Palliative pastoral care is not about "adding days to life, but about "adding life to days". It does not matter whether the dying process is short or long. What matters is to ensure the best possible quality of life until the very end through mindful companionship. Palliative pastoral care is a path towards a personal dying, dying where the person is taken seriously as an individual until the last moment. Palliative care includes medical assistance, careful care, psychosocial support, and counselling that addresses the spiritual needs of the dying. This palliative care includes inpatient and outpatient hospice work and accompanies not only the patients but also their relatives. It must become the standard procedure in end of life care. The palliative pastoral care also take the needs of medical staff into account: Time-consuming care for the dying exceeds the staff's time budget. A sudden death can be perceived as traumatic. In this case palliative pastoral care must perform the tasks of crisis management, crisis intervention and de-escalation. The debriefing of involved staff can prevent the development of burn-out syndrome. In the view of holistic healthcare, health insurance funds should co-finance pastoral care. Society and humanity benefit from addressing the needs of the dying. In an economically dominated environment it is a social responsibility to make dying humane. PMID:26983110

  15. Palliative Care Caregivers' Grief Mediators: A Prospective Study.

    PubMed

    Coelho, Alexandra M; Delalibera, Mayra A; Barbosa, António

    2016-05-01

    The aim of the study is to identify the mediators of complicated grief in a Portuguese sample of caregivers. Grief mediators were prospectively evaluated using a list of risk factors completed by the palliative care team members, during the predeath and bereavement period. More than 6 months after the death, we applied PG-13 to diagnose prolonged grief disorder (PGD). The sample was composed of 64 family caregivers. Factors associated with PGD were insecure and dependent relationship, unresolved family crisis, and the perceived deterioration and disfigurement of the patient. The results show relational factors are relevant, but we must consider the reciprocal influence among factors, as well as their impact on specific symptoms. PMID:25601321

  16. The Integration of Palliative Care into the Emergency Department.

    PubMed

    Basol, Nursah

    2015-06-01

    Palliative care (PC) is a new and developing area. It aims to provide the best possible quality of life for patients with life-limiting diseases. It does not primarily include life-extending therapies, but rather tries to help patients spend the rest of their lives in the best way. PC patients often are admitted to emergency departments during the course of a disease. The approach and management of PC include differences with emergency medicine. Thus, there are some problems while providing PC in the ED. With this article, the definition, main features, benefits, and problems of providing PC are presented, with the primary aim of emphasizing the importance of PC integration into the ED. PMID:27336074

  17. Palliative Care Training and Research: The Development in Europe and the Bologna Experience

    PubMed Central

    Bolognesi, Deborah; Brighi, Nicole; Muciarelli, Pier-Angelo; Biasco, Guido

    2013-01-01

    Development of palliative care (PC) culture spur the need of proper and formal training. Palliative medicine is not fully recognized as an academic medical discipline due to its humanistic influences, and studies show that physicians declare to be not prepared to provide care and pain management to dying patients. Nowadays, despite leading countries in PC being considered more innovative than other countries,such as Italy, facts show that the achievement of acknowledged discipline went through a long process. In Italy,professionals from about 450 PC units and organizations need to receive a proper and homogeneous training. In Italy, palliative medicine official certification is an undergoing process advocated by a few organizations and in Bologna the Academy of the Sciences of Palliative Medicine operates since 2007 with the defined mission of developing PC culture, also within the University. In order to be as much effective in pursuing its mission, the Academy has strengthened several international cooperation programs and today is leader in PC professional training and research in Italy. The recent law and its feasibility is fastening the process of development of Palliative Care Culture in Italy even if training is not properly regulated and official certification for physician is under evaluation. In Europe, the European Association of Palliative Care is stressing the need for training programs in palliative medicine and the outcomes of the dedicated task force on official certification and specialty in Palliative Medicine will remarkably force policy makers and national councils to officially recognize the discipline. PMID:23766591

  18. The use of palliative care to promote autonomy in decision making.

    PubMed

    Zalonis, Ruth; Slota, Margaret

    2014-12-01

    This article explores barriers to informed decision making in health care, and it proposes palliative care as one means of responding to the challenge of a widespread lack of autonomy in decision making. Through an exploration of research in the fields of autonomy and palliative care, the advantages of informed decision making and advance care planning by patients with advanced illness are discussed, and the implications for clinical practice and patient outcomes are described. Continuity, collaboration, and communication have a synergistic effect on autonomy. The expectation that the palliative care team will be in constant communication with the attending physician, nurses, and other specialists also promotes autonomous decision making. Patients who receive palliative care may have multiple advantages, including increased survival, improved quality of life, and opportunities for the exercise of autonomy.

  19. Global warming in the palliative care research environment: adapting to change.

    PubMed

    Fainsinger, R L

    2008-06-01

    Advocates of palliative care research have often described the cold and difficult environment that has constrained the development of research internationally. The development of palliative care research has been slow over the last few decades and has met with resistance and sometimes hostility to the idea of conducting research in 'vulnerable populations'. The seeds of advocacy for research can be found in palliative care literature from the 1980s and early 1990s. Although we have much to do, we need to recognize that palliative care research development has come a long way. Of particular note is the development of well-funded collaboratives that now exist in Europe, Canada, Australia and the USA. The European Association for Palliative Care and the International Association for Hospice and Palliative Care has recognized the need to develop and promote global research initiatives, with a special focus on developing countries. Time is needed to develop good research evidence and in a more complex healthcare environment takes increasingly more resources to be productive. The increased support (global warming) evident in the increased funding opportunities available to palliative care researchers in a number of countries brings both benefits and challenges. There is evidence that the advocacy of individuals such as Kathleen Foley, Neil MacDonald, Balfour Mount, Vittorio Ventafridda, Robert Twycross and Geoff Hanks is now providing fertile ground and a much friendlier environment for a new generation of interdisciplinary palliative care research. We have achieved many of the goals necessary to avoid failure of the 'palliative care experiment', and need to accept the challenge of our present climate and adapt and take advantage of the change.

  20. A Bimonthly Interdisciplinary State-wide Palliative Care Case Conference Promotes Education, Networking, and Emotional Support

    PubMed Central

    Freitas, Elizabeth; Fischberg, Daniel

    2014-01-01

    Background: Meeting emotional, educational, and professional development needs for palliative care practitioners is a priority of clinical practice guidelines for quality palliative care. Here, we introduce and evaluate Palliative Pupus, a novel, state-wide, interdisciplinary, case conference designed to meet these needs. Methods: Palliative Pupus is a free, interdisciplinary case conference open to all hospice and palliative care clinicians in Hawai‘i. The conference has convened every other month since 2010 and is jointly sponsored by Hawai‘i's largest hospital-based palliative care program and Kokua Mau, Hawai‘i's hospice and palliative care organization. Twenty to forty participants typically meet on the island of O‘ahu and are joined by participants from other islands who attend remotely via audio or video conferencing technology. Attendees at the Palliative Pupus on May 15th, 2013 were asked to complete an anonymous evaluation tool designed for this purpose. Demographic data were analyzed using SPSS software (IBM, 1911) and inductive content analysis was carried out on open-ended questions. Results: Twenty-four attendees participated in the study. The majority of participants were women (75%). The leading disciplines of attendees were nursing (46%), medicine (25%), and chaplaincy (12.5%). The primary work settings were hospice (67%) and hospital (25%). Participants cited education (96%), networking (87%), and emotional support (37%) as reasons for attending. Inductive content analysis revealed the most valued benefits of attending were educational (71%), an enhanced sense of being part of a community of providers (24%), and emotional/psychological support (24%). Respondents agreed that the format of the conference would work in other communities (100%) and that they would recommend attending the conference to others (100%). Conclusions: Palliative Pupus is an innovative and sustainable state-wide approach to meeting diverse educational, emotional, and

  1. Healing Environments: Integrative Medicine and Palliative Care in Acute Care Settings.

    PubMed

    Estores, Irene M; Frye, Joyce

    2015-09-01

    Conventional medicine is excellent at saving lives; however, it has little to offer to address the physical, mental, and emotional distress associated with life-threatening or life-limiting disease. An integrative approach to palliative care in acute care settings can meet this need by creating healing environments that support patients, families, and health care professionals. Mindful use of language enhances the innate healing response, improves communication, and invites patients and families to participate in their care. Staff should be offered access to skills training to cultivate compassion and mindful practice to enhance both patient and self-care.

  2. Using routine data to improve palliative and end of life care

    PubMed Central

    Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia

    2016-01-01

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data. PMID:26928173

  3. Oncologists’ Perspectives on Concurrent Palliative Care in an NCI-designated Comprehensive Cancer Center

    PubMed Central

    Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim

    2013-01-01

    Purpose To understand oncology clinicians’ perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. Methods Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Results Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) “some patients just want to fight”, and 4) helping with transitions; timing is everything. Five themes comprised oncologists’ views on the complementary role of palliative care: 1) “refer early and often”, 2) referral challenges: “Palliative” equals hospice; “Heme patients are different”, 3) palliative care as consultants or co-managers, 4) palliative care “shares the load”, and 5) ENABLE II facilitated palliative care integration. Conclusions Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care. PMID:23040412

  4. Using routine data to improve palliative and end of life care.

    PubMed

    Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia

    2016-09-01

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.

  5. Palliative care for patients with HIV/AIDS admitted to intensive care units

    PubMed Central

    Souza, Paola Nóbrega; de Miranda, Erique José Peixoto; Cruz, Ronaldo; Forte, Daniel Neves

    2016-01-01

    Objective To describe the characteristics of patients with HIV/AIDS and to compare the therapeutic interventions and end-of-life care before and after evaluation by the palliative care team. Methods This retrospective cohort study included all patients with HIV/AIDS admitted to the intensive care unit of the Instituto de Infectologia Emílio Ribas who were evaluated by a palliative care team between January 2006 and December 2012. Results Of the 109 patients evaluated, 89% acquired opportunistic infections, 70% had CD4 counts lower than 100 cells/mm3, and only 19% adhered to treatment. The overall mortality rate was 88%. Among patients predicted with a terminally ill (68%), the use of highly active antiretroviral therapy decreased from 50.0% to 23.1% (p = 0.02), the use of antibiotics decreased from 100% to 63.6% (p < 0.001), the use of vasoactive drugs decreased from 62.1% to 37.8% (p = 0.009), the use of renal replacement therapy decreased from 34.8% to 23.0% (p < 0.0001), and the number of blood product transfusions decreased from 74.2% to 19.7% (p < 0.0001). Meetings with the family were held in 48 cases, and 23% of the terminally ill patients were discharged from the intensive care unit. Conclusion Palliative care was required in patients with severe illnesses and high mortality. The number of potentially inappropriate interventions in terminally ill patients monitored by the palliative care team significantly decreased, and 26% of the patients were discharged from the intensive care unit. PMID:27737420

  6. Palliative care for the terminally ill in America: the consideration of QALYs, costs, and ethical issues.

    PubMed

    Yang, Y Tony; Mahon, Margaret M

    2012-11-01

    The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. PMID:22071573

  7. [Integration of the Principles of Palliative Care In Intensive Care Medicine].

    PubMed

    Girbau Campo, M Begoña; Monedero Rodríguez, Pablo; Centeno Cortés, Carlos

    2016-01-01

    Recent scientific literature has shown a growing interest to integrate palliative medicine principles into the daily workflow in the intensive care unit (ICU). This article reviews this trend with the goal that its application might provide more understanding in the resolution of some current ethical issues. Patients with an advanced disease process and at the end of life who are admitted in the intensive care unit are in such a profound level of suffering and vulnerability that only an holistic and comprehensive approach can provide adequate relief to them. Nevertheless, the reality of the clinical care of these patients in the ICU is far beyond that ideal. Our primary end point is the improvement in the clinical care provided, especially when the patient is dying. It is indeed very complex to make progress in this field, but an effort has to be made. The project is to turn to palliative medicine as a role model for end of life care and as an holistic approach, and introduce palliative medicine principles in the ICU. The goal of this article is to reveal a practical approach to accomplish this, and make it functional in order to improve our patients' clinical and ethical care. PMID:27637192

  8. Bus rounds for palliative care education in the community

    PubMed Central

    Bruera, E; Selmser, P; Pereira, J; Brenneis, C

    1997-01-01

    Increasingly, patients with cancer are dying at home and in continuing care facilities. The purpose of bus rounds is to provide continuing education to physicians and nurse palliative care consultants, to familiarize family physicians with the delivery of care in these settings and to educate family medicine and specialty residents as well as medical students. A total of 18 4-hour bus rounds took place during 1996. A mean of 13 (range 9 to 17) participants attended, to discuss a mean of 3.5 (range 2 to 4) patients and 4.5 (range 3 to 8) journal articles. A questionnaire was filled out anonymously by 18 first-time medical and 24 first-time nursing participants. On a scale from 1 (worst) to 5 (best), they gave the rounds an overall rating of 5 (range 4 to 5). The mean cost per round was $245.40. The authors conclude that bus rounds provide an opportunity for intensive exposure to community-based learning for physicians, nurses and students and are highly satisfactory from the participants' perspective. PMID:9307561

  9. Professional and educational needs of hospice and palliative care social workers.

    PubMed

    Weisenfluh, Sherri M; Csikai, Ellen L

    2013-01-01

    In the past decade much growth has occurred in the numbers of patients and families served by hospices and palliative care services. Thus, not surprisingly, these services have also been subject to increasing regulation by governmental and accrediting entities. In order to stay up-to-date in this ever-changing environment and to continue to provide effective interventions, social workers must stay engaged in the professional community and continuing education. In this quantitative study, 1,169 practicing hospice and palliative care social workers provided information about their practice activities and agency characteristics, professional affiliations and certification, and ongoing educational needs. About one-half of respondents carried a caseload of 21-50 and were most engaged in communicating the psychosocial needs of the patient and family to other members of the team and assessing for grief and bereavement issues. The most important educational needs pertained to the psychological and social needs of patients and families and psychosocial interventions. Most were members of professional organizations and three-quarters were members of NASW. Although many were aware of the joint NASW-NHPCO social work hospice specialty certification, few held this certification yet. The results of this survey can be utilized in the design of continuing education programs and advocacy for programmatic and policy change within agencies and the industry. PMID:23438645

  10. [Importance of Anesthesiologists in the Work of a Palliative Care Team].

    PubMed

    Hozumi, Jun; Sumitani, Masahiko

    2016-03-01

    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.

  11. The Illness Experience: Palliative Care Given the impossibility of Healing.

    PubMed

    Dantas, Margarida Maria Florêncio; Amazonas, Maria Cristina Lopes de Almeida

    2016-06-01

    This paper presents a reflection about being terminally ill and the various ways that the subject has at its disposal to deal with this event. The objective is to understand the experience of palliation for patients undergoing no therapeutic possibilities of cure. The methodology of this study has the instruments to semi-structured interview, the participant observation and the field diary, and the Descriptive Analysis of Foucault's inspiration how the narratives of the subjects were perceived. The Results of paper there was the possibility of looking at the experience of illness through the eyes of a subject position assumed by the very sick. As conclusion we have than when choosing palliative care, the terminally ill opts for a way to feel more comfortable and resists the impositions of the medical model of prolonging life. O presente trabalho traz uma reflexão a respeito do ser um doente terminal e das várias maneiras que o sujeito tem a seu dispor para lidar com esse acontecimento. Nosso objetivo foi compreender a experiência da paliação por sujeitos doentes sem possibilidades terapêuticas de cura. A metodologia deste estudo teve como instrumentos a Entrevista Narrativa, a Observação Participante e o Diário de Campo, sendo a Análise Descritiva de inspiração foucaultiana o modo como as narrativas dos sujeitos foram percebidas. O resultado do estudo mostrou a possibilidade de olhar a experiência do adoecer através da ótica de uma posição de sujeito assumida pelo próprio enfermo. E concluímos que ao escolher os cuidados paliativos, o doente terminal opta por um modo de se sentir mais confortável e resiste às imposições do modelo médico de prolongamento da vida. PMID:27384275

  12. The Illness Experience: Palliative Care Given the impossibility of Healing.

    PubMed

    Dantas, Margarida Maria Florêncio; Amazonas, Maria Cristina Lopes de Almeida

    2016-06-01

    This paper presents a reflection about being terminally ill and the various ways that the subject has at its disposal to deal with this event. The objective is to understand the experience of palliation for patients undergoing no therapeutic possibilities of cure. The methodology of this study has the instruments to semi-structured interview, the participant observation and the field diary, and the Descriptive Analysis of Foucault's inspiration how the narratives of the subjects were perceived. The Results of paper there was the possibility of looking at the experience of illness through the eyes of a subject position assumed by the very sick. As conclusion we have than when choosing palliative care, the terminally ill opts for a way to feel more comfortable and resists the impositions of the medical model of prolonging life. O presente trabalho traz uma reflexão a respeito do ser um doente terminal e das várias maneiras que o sujeito tem a seu dispor para lidar com esse acontecimento. Nosso objetivo foi compreender a experiência da paliação por sujeitos doentes sem possibilidades terapêuticas de cura. A metodologia deste estudo teve como instrumentos a Entrevista Narrativa, a Observação Participante e o Diário de Campo, sendo a Análise Descritiva de inspiração foucaultiana o modo como as narrativas dos sujeitos foram percebidas. O resultado do estudo mostrou a possibilidade de olhar a experiência do adoecer através da ótica de uma posição de sujeito assumida pelo próprio enfermo. E concluímos que ao escolher os cuidados paliativos, o doente terminal opta por um modo de se sentir mais confortável e resiste às imposições do modelo médico de prolongamento da vida.

  13. Validation of a New Instrument for Self-care in Spanish Palliative Care Professionals Nationwide.

    PubMed

    Galiana, Laura; Oliver, Amparo; Sansó, Noemí; Benito, Enric

    2015-09-14

    Self-care is a cornerstone issue for those who deal with stressful events, as it is the case of palliative care professionals. It has been related to awareness, coping with death and quality of life, among others, but no measurement instruments have been used in palliative care professionals. This research presents and validates a brief new measure with clinical and psychometric good properties, called Professional Self-Care Scale (PSCS). The PSCS assesses professionals' self-care in three areas: physical self-care, inner self-care, and social self-care. Data come from a cross-sectional survey in a sample of 385 professionals of palliative care. The Mindful Attention Awareness Scale, the Coping with Death Scale, and the Professional's Quality of Life measure were also used. Results of the CFA showed adequate fit (χ2(24, N = 385) = 140.66, p < .01; CFI = .91; GFI = .93; SRMR = .09; and RMSEA = .10). Evidence pointed better reliability indices for the 3-item physical and inner factors of self-care than for the social dimension (Rho and GLB of .64, .90, and .57, respectively). Evidence regarding validity was consistent with previous literature. When levels of self-care were examined, women showed higher levels of inner and social self-care (F(3, 371) = 3.19, p = .02, η2 = .03, as also did psychologists when compared to doctors and nurses (F(9, 1074) = 2.00, p = .04, η2 = .02. The PSCS has shown adequate psychometric properties, and thus it could be used as diagnostic instrument when studying professionals' health.

  14. Palliative care in pediatric hematological oncology patients: experience of a tertiary hospital

    PubMed Central

    Valadares, Maria Thereza Macedo; Mota, Joaquim Antônio César; de Oliveira, Benigna Maria

    2014-01-01

    Objective To evaluate the approach to palliative care for hematological oncology patients in the pediatric ward of a tertiary hospital. Methods This was a retrospective, descriptive study of 29 hematological oncology patients who died between 2009 and 2011. Data regarding the approach and prevalence of pain, prevalence of other symptoms, multidisciplinary team participation, communication between staff and family and limited invasive therapy were collected from the medical records. Results Twenty-seven (93.1%) patients displayed disease progression unresponsive to curative treatment. The median age at death was ten years old. Pain was the most prevalent symptom with all patients who reported pain receiving analgesic medications. The majority took weak (55.2%) and/or strong (65.5%) opioids. The patients were followed by pediatricians and a pediatric hematologist/oncologist. Participation of other professionals was also documented: 86.2% were followed by social services and 69% by psychologists, among others. There were explicit descriptions of limitation of invasive therapy in the medical records of 26 patients who died with disease progression. All these decisions were shared with the families. Conclusion Although the hospital where this study was conducted does not have a specialized team in pediatric palliative care, it meets all the requirements for developing a specific program. The importance of approaching pain and other prevalent symptoms in children with cancer involving a comprehensive multidisciplinary team is evident. Discussions were had with most of the families on limiting invasive therapy, but no record of a well-defined and coordinated treatment plan for palliative care was found. PMID:25453649

  15. Integrating palliative care in oncologic emergency departments: Challenges and opportunities

    PubMed Central

    Elsayem, Ahmed F; Elzubeir, Hiba E; Brock, Patricia A; Todd, Knox H

    2016-01-01

    Although visiting the emergency departments (EDs) is considered poor quality of cancer care, there are indications these visits are increasing. Similarly, there is growing interest in providing palliative care (PC) to cancer patients in EDs. However, this integration is not without major challenges. In this article, we review the literature on why cancer patients visit EDs, the rates of hospitalization and mortality for these patients, and the models for integrating PC in EDs. We discuss opportunities such integration will bring to the quality of cancer care, and resource utilization of resources. We also discuss barriers faced by this integration. We found that the most common reasons for ED visits by cancer patients are pain, fever, shortness of breath, and gastrointestinal symptoms. The majority of the patients are admitted to hospitals, about 13% of the admitted patients die during hospitalization, and some patients die in ED. Patients who receive PC at an ED have shorter hospitalization and lower resource utilization. Models based solely on increasing PC provision in EDs by PC specialists have had modest success, while very limited ED-based PC provision has had slightly higher impact. However, details of these programs are lacking, and coordination between ED based PC and hospital-wide PC is not clear. In some studies, the objectives were to improve care in the communities and reduce ED visits and hospitalizations. We conclude that as more patients receive cancer therapy late in their disease trajectory, more cancer patients will visit EDs. Integration of PC with emergency medicine will require active participation of ED physicians in providing PC to cancer patients. PC specialist should play an active role in educating ED physicians about PC, and provide timely consultations. The impact of integrating PC in EDs on quality and cost of cancer care should be studied. PMID:27081645

  16. Home Care Services

    MedlinePlus

    Home care is care that allows a person with special needs stay in their home. It might be for people who are getting ... chronically ill, recovering from surgery, or disabled. Home care services include Personal care, such as help with ...

  17. Caring for older people. Community services: health.

    PubMed

    Pushpangadan, M; Burns, E

    1996-09-28

    Many frail or disabled elderly people are now being maintained in the community, partially at least as a consequence of the Community Care Act 1993. This paper details the work of the major health professionals who are involved in caring for older people in the community and describes how to access nursing, palliative care, continence, mental health, Hospital at Home, physiotherapy, occupational therapy, equipment, and optical, dental, and dietetic services. In many areas, services are evolving to meet needs and some examples of innovative practice are included.

  18. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach

    PubMed Central

    Kenner, C; Press, J; Ryan, D

    2015-01-01

    Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations. PMID:26597801

  19. Distribution and sharing of palliative care costs in rural areas of Canada.

    PubMed

    Dumont, Serge; Jacobs, Philip; Turcotte, Véronique; Turcotte, Stéphane; Johnston, Grace

    2014-01-01

    Few data are available on the costs occurring during the palliative phase of care and on the sharing of these costs in rural areas. This study aimed to evaluate the costs related to all resources used by rural palliative care patients and to examine how these costs were shared between the public healthcare system (PHCS), patients' families, and not-for-profit organizations (NFPOs). A prospective longitudinal study was undertaken of 82 palliative care patients and their main informal caregivers in rural areas of four Canadian provinces. Telephone interviews were completed at two-week intervals. The mean total cost per patient for a six-month participation in a palliative care program was CA$31,678 +/- 1,160. A large part of this cost was attributable to inpatient hospital stays and was assumed by the PHCS. The patient's family contributed less than a quarter of the mean total cost per patient, and this was mainly attributable to caregiving time.

  20. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach.

    PubMed

    Kenner, C; Press, J; Ryan, D

    2015-12-01

    Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations. PMID:26597801

  1. Applying sociodramatic methods in teaching transition to palliative care.

    PubMed

    Baile, Walter F; Walters, Rebecca

    2013-03-01

    We introduce the technique of sociodrama, describe its key components, and illustrate how this simulation method was applied in a workshop format to address the challenge of discussing transition to palliative care. We describe how warm-up exercises prepared 15 learners who provide direct clinical care to patients with cancer for a dramatic portrayal of this dilemma. We then show how small-group brainstorming led to the creation of a challenging scenario wherein highly optimistic family members of a 20-year-old young man with terminal acute lymphocytic leukemia responded to information about the lack of further anticancer treatment with anger and blame toward the staff. We illustrate how the facilitators, using sociodramatic techniques of doubling and role reversal, helped learners to understand and articulate the hidden feelings of fear and loss behind the family's emotional reactions. By modeling effective communication skills, the facilitators demonstrated how key communication skills, such as empathic responses to anger and blame and using "wish" statements, could transform the conversation from one of conflict to one of problem solving with the family. We also describe how we set up practice dyads to give the learners an opportunity to try out new skills with each other. An evaluation of the workshop and similar workshops we conducted is presented.

  2. Palliative care and policy in England: a review of health improvement plans for 1999-2003.

    PubMed

    Seymour, J; Clark, D; Marples, R

    2002-01-01

    Since 1987 health authorities in England have been required to make plans for palliative care provision, but their record in doing so has been patchy. The production of health improvement plans (HlmPs), in which each health authority must set out its priorities and actions designed to improve the health and well-being of its local population, provides an opportunity to examine the extent to which palliative care provision in the NHS is regarded as a priority by policy makers in England. This paper reports on a structured documentary review of the HlmPs published by the 99 health authorities in England. The review indicates that at the moment, in spite of the longstanding duty placed on health authorities to develop strategic plans for palliative care and to assess the level of local palliative care needs, not all have made significant progress in this direction. Among those that do have plans for palliative care, the vast majority of these plans are for people with cancer. What emerges most clearly is a sense in which specialist palliative care, especially for non-cancer patients, is perceived as an 'optional extra' by many health authorities rather than an integral and essential part of the overall supportive care strategy which they clearly are at pains to develop.

  3. CARES: AACN's New Competencies and Recommendations for Educating Undergraduate Nursing Students to Improve Palliative Care.

    PubMed

    Ferrell, Betty; Malloy, Pam; Mazanec, Polly; Virani, Rose

    2016-01-01

    Nurses spend the most time of any health care professional caring for patients and families dealing with the challenges of serious illness. The demand for nursing expertise in palliative care is growing as more people are living with chronic, life-limiting illnesses. Nursing faculty must prepare future nurses to meet this demand. The new American Association of Colleges of Nursing Palliative Competencies And Recommendations for Educating undergraduate nursing Students document, released February 2016, identifies the 17 competencies that all undergraduate nursing students should achieve by the time of graduation. This historic document is a revision of the 1998 American Association of Colleges of Nursing Peaceful Death document and is now the guiding framework for undergraduate nursing education. In an effort to support nursing faculty and prepare nursing students to deliver quality palliative care, an innovative, interactive on-line undergraduate End-of-Life Nursing Education Consortium (ELNEC) curriculum is under development and will be released in January 2017. This new curriculum will meet the competencies and recommendations for achieving those competencies outlined in the Competencies And Recommendations for Educating undergraduate nursing Students document. PMID:27649590

  4. CARES: AACN's New Competencies and Recommendations for Educating Undergraduate Nursing Students to Improve Palliative Care.

    PubMed

    Ferrell, Betty; Malloy, Pam; Mazanec, Polly; Virani, Rose

    2016-01-01

    Nurses spend the most time of any health care professional caring for patients and families dealing with the challenges of serious illness. The demand for nursing expertise in palliative care is growing as more people are living with chronic, life-limiting illnesses. Nursing faculty must prepare future nurses to meet this demand. The new American Association of Colleges of Nursing Palliative Competencies And Recommendations for Educating undergraduate nursing Students document, released February 2016, identifies the 17 competencies that all undergraduate nursing students should achieve by the time of graduation. This historic document is a revision of the 1998 American Association of Colleges of Nursing Peaceful Death document and is now the guiding framework for undergraduate nursing education. In an effort to support nursing faculty and prepare nursing students to deliver quality palliative care, an innovative, interactive on-line undergraduate End-of-Life Nursing Education Consortium (ELNEC) curriculum is under development and will be released in January 2017. This new curriculum will meet the competencies and recommendations for achieving those competencies outlined in the Competencies And Recommendations for Educating undergraduate nursing Students document.

  5. The international observatory on end of life care: a global view of palliative care development.

    PubMed

    Clark, David; Wright, Michael

    2007-05-01

    The International Observatory on End of Life Care (IOELC) was established at Lancaster University, UK, in 2003. Its aims are to provide clear and accessible research-based information about hospice and palliative care provision in the international context. Dissemination is via the Observatory web site (www.eolc-observatory.net), as well as through published articles, monographs, reports, and other media, in ways that facilitate cross-national comparative analysis and stimulate practical development. Primary research studies and reviews are undertaken to generate relevant information. We describe the methods adopted by the IOELC and the range of projects recently undertaken. In particular, we give details of the IOELC categorization of hospice and palliative care development, which can be applied at the country level to facilitate international comparison. We show how this has been used to create a "world map" of hospice and palliative care provision and indicate some of the uses to which this can be put and the ways in which it can be refined over time.

  6. Palliative Care in Your Nursing Home: Program Development and Innovation in Transitional Care.

    PubMed

    Giuffrida, Jennifer

    2015-01-01

    Each year in the United States, 31% of elders who die do so in hospitals, accounting for over half a million deaths often involving expensive and unnecessary treatments (Zhao & Encinosa, 2010 ). Re-hospitalizations of frail elders with end-stage illnesses are a concern for the hospitals that have discharged them and for the facilities in which they live. In 2011, Schervier Nursing Care Center, a 364-bed skilled nursing and rehabilitation facility in the Bronx, NY, looked at its re-hospitalization rates. It was discovered that a large percentage of the residents being sent to the hospital were from the long-term and subacute populations with end-stage diseases that were no longer responding to treatment. This article describes the development of two innovative programs whose goals were to increase the number of residents receiving palliative care, increase the number of completed advance directives, reduce re-hospitalizations, and increase hospital referrals to the nursing home for palliative care. The key components of both programs and their outcomes are described. The development and implementation of these programs were the author's capstone project for the Zelda Foster Social Work Leadership Fellowship in Palliative and End-of-Life Care.

  7. Palliative Care Improves Survival, Quality of Life in Advanced Lung Cancer | Division of Cancer Prevention

    Cancer.gov

    Results from the first randomized clinical trial of its kind have revealed a surprising and welcome benefit of early palliative care for patients with advanced lung cancer—longer median survival. Although several researchers said that the finding needs to be confirmed in other trials of patients with other cancer types, they were cautiously optimistic that the trial results could influence oncologists’ perceptions and use of palliative care. |

  8. Can we overcome the effect of conflicts in rendering palliative care? An introduction to the Middle Eastern Cancer Consortium (MECC).

    PubMed

    Silbermann, Michael; Khleif, Amal; Tuncer, Murat; Pitsillides, Barbara; Shad, Aziza; Oberman, Amitai; Elshami, Mohammad; Gultekin, Murat; Daher, Michel; Tarawneh, Mohammed; Harford, Joe

    2011-08-01

    The Middle East has been experiencing an ongoing political conflict for the past several decades. This situation has been characterized by hostility often leading to violence of all sources. At times, such a conflict led to the outbreak of a military war, which was followed by an enmity between religious, ethnic, cultural, and national populations. In such environmental situations, palliative care professionals often confront major challenges including bias, mistrust, and mutual suspicion between patients and their treating clinicians. In order to overcome such obstacles, while rendering palliative care services, all professionals involved need careful planning and execution of their treatment plans. The latter is however possible, and sometimes successful even across lines of conflict, thereby promoting understanding, mutual respect, and tolerance between the involved communities and individuals.

  9. Preventing crises in palliative care in the home. Role of family physicians and nurses.

    PubMed Central

    Howarth, G.; Willison, K. B.

    1995-01-01

    With the current shift to community care, the need for palliative care in the home involving the family physician has increased. Potential causes of crises in the home care of the dying are identified. Strategies to prevent crises are suggested that rely on a team's providing comprehensive and anticipatory care. PMID:7539653

  10. Nutritional support and quality of life in cancer patients undergoing palliative care.

    PubMed

    Prevost, V; Grach, M-C

    2012-09-01

    In palliative care, the nutrition provided has to be tailored to the patient's needs, enhancing patient comfort and quality of life (QoL). We conducted a literature search to review methods of measuring QoL, and modalities of nutritional intervention and their influence on QoL of cancer patients in palliative care. Original papers published in English were selected from PubMed database by using the search terms, palliative medicine, cancer, nutrition and quality of life. Specific tools that are particularly recommended to assess QoL in a palliative care setting are reviewed. The main goal in palliative care is to maintain oral nutrition by providing nutritional counselling. Enteral nutritional support showed inconsistent effects on survival and QoL. An evidence-base for parenteral nutrition is still lacking. Ethical considerations concerning provision of food and hydration in end-of-life care are discussed. Nutritional status should be assessed early and regularly during treatment using appropriate tools. In the particularly acute context of palliative care, optimal patient management requires adequate education and counselling to patients and families. Meaningful interactions between the patient, caregivers and medical team would also increase the chance of resolving nutrition-related issues and help to fulfil each patient's specific nutritional needs and thus improve the QoL.

  11. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: a communication guide.

    PubMed

    Jackson, Vicki A; Jacobsen, Juliet; Greer, Joseph A; Pirl, William F; Temel, Jennifer S; Back, Anthony L

    2013-08-01

    Early, integrated palliative care delivered in the ambulatory setting has been associated with improved quality of life, lower rates of depression, and even prolonged survival. We outline an expert practice that provides a step-wise approach to cultivating prognostic awareness in patients cared for by a palliative care clinician early in the course of the patient's disease. This approach can be used by both novice and more experienced palliative care clinicians. PMID:23786425

  12. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring.

    PubMed

    Jones, Barbara L; Contro, Nancy; Koch, Kendra D

    2014-02-01

    Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.

  13. A 4-year integrated curriculum in palliative care for medical undergraduates.

    PubMed

    Radwany, Steven M; Stovsky, Erica J; Frate, Dean M; Dieter, Kevin; Friebert, Sarah; Palmisano, Barbara; Sanders, Margaret

    2011-12-01

    In order to graduate physicians prepared to effectively address clinical issues in palliative medicine and to comply with LCME requirements, the Northeastern Ohio Universities Colleges of Medicine and Pharmacy (NEOUCOM) integrated a coordinated four-year palliative care (PC) curriculum. This report describes the development of the longitudinal curriculum and provides helpful resources and strategies to guide clinicians and administrators undertaking similar efforts. This is a retrospective, descriptive report based on data collected throughout development of the new curriculum. A Palliative Care Advisory Committee initiated development of curricula in PC. An Office of Palliative Care was established to assess and coordinate offerings. Curriculum transformation was based on best practices. Two cornerstone pieces are highlighted: a mandatory hospice experience and a case based small group discussion prior to graduation.

  14. [Palliative care in dementia and the dismantling of the treatment function of nursing homes].

    PubMed

    Hertogh, C M P M

    2007-03-01

    Palliative care is mostly restricted to the terminal phase of incurable illness. According to the WHO revised definition palliative care is specifically directed towards patients and families facing life-threatening illness. This definition is not adequate to orient and direct palliative care policies in non-cancer diseases such as dementia. Although dementia is incurable from the outset, its course is often protracted, resulting in a terminal stage only after several years. This disease trajectory necessitates an alternative palliative approach, implying a proactive attitude of nursing home physicians in facilitating early and timely discussions with patients and their proxies on advance care planning and treatment of complications and concomitant diseases. This, together with their specific training in the treatment of the long-term sequelae of chronic diseases, defines the success of Dutch nursing home medicine in foregoing inappropriate hospital admissions and providing adequate medical care in the nursing home. However, recent reorganisations of nursing home care and its funding threaten to downgrade the quality of medical care for patients with dementia in Dutch nursing homes by focusing unilaterally on welfare ideology and 'marketization' of long term care, thus underestimating the importance of a palliative care policy in dementia.

  15. Supportive and palliative care for metastatic breast cancer: resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement.

    PubMed

    Cleary, James; Ddungu, Henry; Distelhorst, Sandra R; Ripamonti, Carla; Rodin, Gary M; Bushnaq, Mohammad A; Clegg-Lamptey, Joe N; Connor, Stephen R; Diwani, Msemo B; Eniu, Alexandru; Harford, Joe B; Kumar, Suresh; Rajagopal, M R; Thompson, Beti; Gralow, Julie R; Anderson, Benjamin O

    2013-10-01

    Many women diagnosed with breast cancer in low- and middle-income countries (LMICs) present with advanced-stage disease. While cure is not a realistic outcome, site-specific interventions, supportive care, and palliative care can achieve meaningful outcomes and improve quality of life. As part of the 5th Breast Health Global Initiative (BHGI) Global Summit, an expert international panel identified thirteen key resource recommendations for supportive and palliative care for metastatic breast cancer. The recommendations are presented in three resource-stratified tables: health system resource allocations, resource allocations for organ-based metastatic breast cancer, and resource allocations for palliative care. These tables illustrate how health systems can provide supportive and palliative care services for patients at a basic level of available resources, and incrementally add services as more resources become available. The health systems table includes health professional education, patient and family education, palliative care models, and diagnostic testing. The metastatic disease management table provides recommendations for supportive care for bone, brain, liver, lung, and skin metastases as well as bowel obstruction. The third table includes the palliative care recommendations: pain management, and psychosocial and spiritual aspects of care. The panel considered pain management a priority at a basic level of resource allocation and emphasized the need for morphine to be easily available in LMICs. Regular pain assessments and the proper use of pharmacologic and non-pharmacologic interventions are recommended. Basic-level resources for psychosocial and spiritual aspects of care include health professional and patient and family education, as well as patient support, including community-based peer support.

  16. Palliative medicine in Britain.

    PubMed

    Doyle, Derek

    In Britain, Palliative Medicine was recognized as a subspecialty of Internal Medicine exactly 20 years after Cicely Saunders founded St Christopher's, at exactly the same time that government was at last recognizing the worth and the needs of general practice. Both had far-reaching effects and implications for patients, doctors, and the future of medicine. For Palliative Medicine it meant units wishing to train specialists going through a rigorous selection process; the development of an equally rigorous training program for the doctors who had already gained a higher qualification before starting Palliative Medicine, demonstrating the need for and benefits of palliative medicine to the sceptics in the profession and, now, continuing to recruit the staff for the steadily increasing number of new services. Today there are more Palliative Medicine consultants/specialists than there are oncologists and neurologists combined, with Hospital Palliative Care Teams in every major hospital and cancer center. With nine Chairs in Palliative Medicine, there is now a drive for research and professional education. The specialty faces major challenges, however, ranging from training to care for patients with non-malignant disease to enabling patients to die in the place of their choice-something that rarely happens today; from defining what is distinctive or unique about palliative medicine to clarifying the respective place of general practice and the specialty. Most would agree that the biggest challenge for the young, thriving specialty is how to share its principles with other doctors wherever they work. PMID:18051021

  17. [Palliative Care for Rectal Cancer Complicated with Gastric Cancer].

    PubMed

    Furukawa, Takeshi; Takahashi, Hitoshi; Tanaka, Kei; Muto, Takaaki

    2015-11-01

    Medical advancements have led to an increase in the number of elderly people. However, standard treatments may sometimes be difficult to use in elderly people. Here, we report the case of an elderly patient with rectal and gastric cancer who refused radical surgery. The patient was an 83-year-old man who had type-2 diabetes, hypertension, hyperuricemia, mitral valve regurgitation, and mild dementia. Furthermore, he was blind in both eyes owing to glaucoma. He first visited our hospital in 2005. In 2010, he was diagnosed with anemia, but he refused a thorough examination; however, he did consent to take iron supplements. In July 2011, he consulted our hospital for symptoms of frequent diarrhea, and agreed to an examination. After colonoscopy, he was diagnosed with rectal cancer that was becoming obstructive. There were no metastases to other organs, but he was also diagnosed with gastric cancer. As he and his family refused radical surgery, a stoma was constructed. After the operation, he received palliative care but died in September 2013. PMID:26805335

  18. The Role of Play in Children's Palliative Care.

    PubMed

    Boucher, Sue; Downing, Julia; Shemilt, Rise

    2014-10-01

    Play is the universal language of childhood and the time and opportunity to play is every child's right. The role of play as a vehicle for communication, a tool for distraction and its value in the holistic development of a normal child is without dispute. The role and value of play increase proportionately when a child is made more vulnerable through illness or disability. Despite this, providing time and opportunities to play can be overlooked or considered to be of little importance or relevance when the focus of the adult carers is the amelioration of clinical symptoms of the illness and on lessening the psychological impact the illness may have on the child. This paper outlines the role and the value of play as an integral component in the provision of palliative care for children with chronic, life-threatening and life-limiting conditions. It will show how providing appropriate equipment, sufficient time and relevant play opportunities not only improves the very sick child's psychological wellbeing, but also allows the child to cast aside the confines and restrictions imposed upon them by their illness and for a few golden moments to be nothing more than a child at play.

  19. The Role of Play in Children’s Palliative Care

    PubMed Central

    Boucher, Sue; Downing, Julia; Shemilt, Rise

    2014-01-01

    Play is the universal language of childhood and the time and opportunity to play is every child’s right. The role of play as a vehicle for communication, a tool for distraction and its value in the holistic development of a normal child is without dispute. The role and value of play increases proportionately when a child is made more vulnerable through illness or disability. Despite this, providing time and opportunities to play can be overlooked or considered to be of little importance or relevance when the focus of the adult carers is the amelioration of clinical symptoms of the illness and on lessening the psychological impact the illness may have on the child. This paper outlines the role and the value of play as an integral component in the provision of palliative care for children with chronic, life-threatening and life-limiting conditions. It will show how providing appropriate equipment, sufficient time and relevant play opportunities not only improves the very sick child’s psychological wellbeing, but also allows the child to cast aside the confines and restrictions imposed upon them by their illness and for a few golden moments to be nothing more than a child at play. PMID:27417481

  20. Palliative care of cancer patients: audit of current hospital procedures.

    PubMed

    Sessa, C; Pampallona, S; Carobbio, M; Neuenschwander, H; Cavalli, F

    1998-05-01

    The palliative care of cancer patients admitted for tumour-related symptoms to three different departments (medical oncology, radiotherapy, internal medicine) of a general hospital was prospectively audited. The physicians directly responsible for the patients provided prospective data by reporting both the diagnostic and therapeutic interventions performed and the degree of control achieved for each symptom. A patient form for evaluation of the control achieved in the case of each symptom by means of linear analogue scales was also provided. The appropriateness of all procedures was evaluated by two external auditors. Over 6 months, 125 such admissions were recorded: 24 patients entered the study and the management of 56 symptoms, the most common of which were pain and dyspnoea, was reviewed. A total of 72 diagnostic procedures were performed, deemed necessary for only 50% of symptoms, optional for 15%, and performed as part of a logical sequence for 38%. A total of 130 therapeutic interventions were undertaken, deemed necessary for 55% of symptoms, optional for 15% and carried out as part of a logical sequence for 44%. Re-evaluations of symptoms and physician and patient evaluations of the degree of control achieved could not be assessed because of lack of information. The audit could not be repeated owing to the low accrual of patients and incompleteness of the data collection. Reasons for failure of the study and proposals for feasible methods of auditing the management of symptoms in cancer patients are discussed.

  1. End-of-life Characteristics of the Elderly: An Assessment of Home-based Palliative Services in Two Panchayats of Kerala

    PubMed Central

    Jayalakshmi, R; Chatterjee, Suhita Chopra; Chatterjee, Debolina

    2016-01-01

    Background: Home-based palliative services form the cornerstone of Kerala's palliative program. However, two issues need research: (a) whether family-homes can be considered as the locus of ageing and dying for marginal populations who experience deprivation and poverty and (b) whether the present delivery structure meets the needs of elderly population. These issues are examined in the context of two rural areas. The study explores end-of-life characteristics of the elderly – their sociodemographic status and living patterns, morbidity profile, and functional status. It also looks into the accessibility and utilization of palliative services and respondents’ satisfaction with different components of the services. Materials and Methods: A descriptive cross-sectional survey design is used. Data were collected based on the interviews of sixty service users sampled randomly from a roster of palliative care services. Semi-structured interviews were substantiated by personal field observations. Results: The study has found people living under extreme financial distress with inadequate shelter and poor social security provisions. The health profile is characterized by high level of functional dependence. Many dependent widowed women were living alone without appropriate care and shelter. The palliative program as perceived by the respondents is characterized by few doctor visitations and poor frequency. Conclusion: The study concludes that home-based palliation in its present form does not promote good end-of-life care. It lacks an integrated approach with good service-mix. It raises serious questions on family-home as the locus of ageing and dying for marginal populations, and suggests need for restructuring of the palliative program. PMID:27803573

  2. What neonatal intensive care nurses need to know about neonatal palliative care.

    PubMed

    Ahern, Kathy

    2013-04-01

    The purpose of this study was to identify and prioritize topics for a professional development program in neonatal palliative care. A total of 276 nurses and midwives who work in an Australian neonatal intensive care unit (NICU) and 26 international healthcare professionals working in NICU and palliative care served as participants. A Delphi technique was used, consisting of a series of rounds of data collection via interview and questionnaire, to identify and consolidate opinions of nurses and other healthcare professionals who work in neonatal intensive care units. The main outcome measures were: (1) Topics to be included in a professional development program for nurses working in neonatal intensive care units and (2) the preferred format of the program. Twenty-three high-priority topics were identified, which included preparing families when death is imminent, how to provide emotional support to grieving parents, advocating for a dying baby, and assessing and managing pain in a dying baby. Care of a dying infant requires the same skill set as caring for older terminally ill children internationally. A combination of face-to-face lectures and interactive workshops using case studies and audiovisual examples is the preferred format.

  3. Preparing the Pediatric Dentist for Palliative and End-of-life Care.

    PubMed

    Sarvas, Elise W; Schwantes, Scott A; Karp, Jeffrey M

    2016-01-01

    Pediatric dentists are the primary providers of dental homes for children with life-threatening and complex chronic conditions. These children are increasingly living at home and seeking health care in community-based settings, including dental offices. Pediatric dentists may feel ill prepared to assume the roles and responsibilities of a pediatric palliative care provider due to limited education and training during dental school and residency; however, they should be sensitive to the palliative care needs of children and families. The purpose of this clinical article was to highlight palliative care scenarios in pediatric dentistry and provide actionable resources to empower pediatric dentists to gather health care information, make informed ethical decisions, promote patient- and family-centered care, and prepare dentists and their dental teams for episodes of death and bereavement when providing a dental home to patients with life-threatening and complex chronic conditions.

  4. Preparing the Pediatric Dentist for Palliative and End-of-life Care.

    PubMed

    Sarvas, Elise W; Schwantes, Scott A; Karp, Jeffrey M

    2016-01-01

    Pediatric dentists are the primary providers of dental homes for children with life-threatening and complex chronic conditions. These children are increasingly living at home and seeking health care in community-based settings, including dental offices. Pediatric dentists may feel ill prepared to assume the roles and responsibilities of a pediatric palliative care provider due to limited education and training during dental school and residency; however, they should be sensitive to the palliative care needs of children and families. The purpose of this clinical article was to highlight palliative care scenarios in pediatric dentistry and provide actionable resources to empower pediatric dentists to gather health care information, make informed ethical decisions, promote patient- and family-centered care, and prepare dentists and their dental teams for episodes of death and bereavement when providing a dental home to patients with life-threatening and complex chronic conditions. PMID:27557917

  5. Palliative care delivery in the NICU: what barriers do neonatal nurses face?

    PubMed

    Kain, Victoria J

    2006-01-01

    Despite the existence of a universal protocol in palliative care for dying babies and their families, provision of this type of care remains ad hoc in contemporary neonatal settings. Influential bodies such as the American Academy of Pediatrics and the World Health Organization support palliative care to this patient population, so why are such measures not universally adopted? Are there barriers that prevent neonatal nurses from delivering this type of care? A search of the literature reveals that such barriers may be significant and that they have the potential to prevent dying babies from receiving the care they deserve. The goal of this literature review is to identify these barriers to providing palliative care in neonatal nursing. Results of the research have been used to determine item content for a survey to conceptualize and address these barriers.

  6. Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care

    PubMed Central

    Cook, Karen; Jack, Susan; Thabane, Lehana; Browne, Gina

    2013-01-01

    Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults' resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults' health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals. PMID:23997951

  7. Integration of Palliative Care Principles into the Ongoing Care of Children with Cancer: Individualized Care Planning and Coordination

    PubMed Central

    Baker, Justin N; Hinds, Pamela S; Spunt, Sheri L; Barfield, Raymond C; Allen, Caitlin; Powell, Brent C; Anderson, Lisa H; Kane, Javier R

    2008-01-01

    Synopsis The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians’ strong desire to provide compassionate, competent and sensitive care to the seriously ill child and the child’s family can be effectively translated into clinical practice through these processes. “To cure sometimes, to relieve often, to comfort always -- this is our work.” Author Unknown PMID:18242323

  8. A survey of the use of complementary and alternative medicine in Illinois hospice and palliative care organizations.

    PubMed

    Van Hyfte, Gregory J; Kozak, Leila E; Lepore, Michael

    2014-08-01

    This research assesses complementary and alternative medicine (CAM) use and administration for patients and family caregivers in Illinois hospice and palliative care organizations. An online survey was administered to a sample of 108 contacts of Illinois organizations listed in the National Hospice and Palliative Care Organization website, and 90.3% of the responding organizations offered some type of CAM. The top 5 most frequently offered CAM modalities to patients were pet therapy (64.5%), music therapy (61.3%), massage therapy (54.8%), art therapy (29.0%), and energy therapies (25.8%); these were the same top 5 offered to families but with different frequencies. Findings regarding utilization, administration, financing, and spiritual/cultural competency are discussed with policy recommendations for data collection, administrative improvements, and integration of CAM providers into service delivery.

  9. Effectiveness of palliative care for non-small cell lung cancer

    PubMed Central

    Li, Huiqin; Li, Jianing

    2016-01-01

    Lung cancer is the leading cause of cancer mortality worldwide. Despite increases in the survival rate for various types of cancer over the past several decades, lung cancer remains an overwhelmingly lethal disease and the majority of patients succumb to the disease in a short period of time. A number of treatment options are available depending on the stage of lung cancer. The present review focused on palliative care and is associated with stage IIIB and IV of non-small cell lung cancer (NSCLC). Stage IIIB disease is not amenable to curative treatment and for stage IV disease, treatment is palliative in nature, with a focus on increasing survival time, controlling symptoms and improving or maintaining quality of life. Palliative treatment options include chemotherapy, radiotherapy and supportive care. The present review examines the important aspects of palliative therapy with regard to NSCLC.

  10. Early integration of palliative care into oncology: evidence, challenges and barriers.

    PubMed

    Zhi, Wanqing Iris; Smith, Thomas J

    2015-07-01

    Palliative care has proven to be an important component during the care of seriously ill oncology patients. In the past decade, early integration of both specialties demonstrated benefits in improving patient symptoms and pain, facilitating advance directive planning and reducing medical cost. Newer evidence also suggests it can prolong life. Several different integration models have been studied and all appear to work. Yet, palliative care is underused, and there are still many challenges and barriers preventing us from delivering the best care to our patients. In this review, we will summarize the available data from multiple randomized clinical trials, encountered challenges, and potential strategies to overcome them.

  11. Does the Culture of Modern Day Palliative Care Social Work Leave Room for Leadership?

    PubMed Central

    Davidson, Jason

    2016-01-01

    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 care social work. However, it relates to much broader themes including the history, politics and culture of this profession and the requirements for leadership on the part of social work in the broader contexts of health and social care. PMID:27570357

  12. [Nursing in palliative care to children and adolescents with cancer: integrative literature review].

    PubMed

    da Costa, Thailly Faria; Ceolim, Maria Filomena

    2010-12-01

    Pediatric palliative care is a challenge for nursing because it requires emotional balance and knowledge about its specific features. This study is an integrative literature review that aims to identify nursing actions in palliative care for children and adolescents with cancer, considering peculiarities of the disease and dying process. The review was performed by searching for articles indexed in Biblioteca Virtual da Adolescência (Adolec), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS) and PubMed databases from January 2004 till May 2009. From 29 references found, six met inclusion criteria. Results show teamwork, home care, pain management, dialogue, family support and particularities of childhood cancer fundamental tools for nursing in palliative care. The complexity of care in this situation requires solidarity, compassion, support and relieving suffering. PMID:21805890

  13. [Nursing in palliative care to children and adolescents with cancer: integrative literature review].

    PubMed

    da Costa, Thailly Faria; Ceolim, Maria Filomena

    2010-12-01

    Pediatric palliative care is a challenge for nursing because it requires emotional balance and knowledge about its specific features. This study is an integrative literature review that aims to identify nursing actions in palliative care for children and adolescents with cancer, considering peculiarities of the disease and dying process. The review was performed by searching for articles indexed in Biblioteca Virtual da Adolescência (Adolec), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS) and PubMed databases from January 2004 till May 2009. From 29 references found, six met inclusion criteria. Results show teamwork, home care, pain management, dialogue, family support and particularities of childhood cancer fundamental tools for nursing in palliative care. The complexity of care in this situation requires solidarity, compassion, support and relieving suffering.

  14. Pharmacological treatments for fatigue associated with palliative care: executive summary of a Cochrane Collaboration systematic review

    PubMed Central

    Mochamat; Cuhls, Henning; Peuckmann‐Post, Vera; Minton, Ollie; Stone, Patrick; Radbruch, Lukas

    2016-01-01

    Abstract Background In palliative care patients, fatigue can be severely debilitating and is often not counteracted with rest, thereby impacting daily activity and quality of life. Further complicating issues are the multidimensionality, subjective nature and lack of a consensus definition of fatigue. The review aimed to evaluate the efficacy of pharmacological treatments for fatigue in palliative care, with a focus on patients at an advanced stage of disease, including patients with cancer and other chronic diseases. Methods We considered randomized controlled trials concerning adult palliative care with a focus on pharmacological treatment of fatigue compared with placebo, application of two drugs, usual care or a non‐pharmacological intervention. The primary outcome had to be non‐specific fatigue (or related terms such as asthenia). We searched the CENTRAL, MEDLINE, PsycINFO and EMBASE, and a selection of cancer journals up to 28 April 2014. Two review authors independently assessed trial quality and extracted the data. Results We screened 1645 publications of which 45 met the inclusion criteria. In total, we analysed data from 18 drugs and 4696 participants. There was a very high degree of statistical and clinical heterogeneity in the trials. Meta‐analysis of data was possible for modafinil, pemoline, and methylphenidate. Conclusions Due to the limited evidence, we cannot recommend a specific drug for the treatment of fatigue in palliative care patients. Some drugs, which may be beneficial for the treatment of fatigue associated with palliative care such as amantadine, methylphenidate, and modafinil, should be further researched. PMID:27066315

  15. Weaving interdisciplinary and discipline-specific content into palliative care education: one successful model for teaching end-of-life care.

    PubMed

    Supiano, Katherine P

    2013-01-01

    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. PMID:23977797

  16. 76 FR 59145 - Submission for OMB Review; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-09-23

    ...-Life and Palliative Care Science Needs Assessment: Funding Source (Survey of Authors) Summary: Under... Care Science Needs Assessment: Funding Source (Survey of Authors). Type of Information Collection Request: NEW. Need and Use of Information Collection: The NINR End-of-Life Science Palliative Care (EOL...

  17. Understanding the challenges of palliative care in everyday clinical practice: an example from a COPD action research project.

    PubMed

    Hynes, Geralyn; Kavanagh, Fiona; Hogan, Christine; R