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Sample records for palliative care services

  1. Palliative Care

    MedlinePlus

    ... for Your Child All About Food Allergies 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. Considering Aboriginal palliative care models: the challenges for mainstream services.

    PubMed

    O'Brien, Anthony P; Bloomer, Melissa J; McGrath, Pam; Clark, Katherine; Martin, Tony; Lock, Mark; Pidcock, Tina; van der Riet, Pamela; O'Connor, Margaret

    2013-01-01

    This review discusses palliative care and end-of-life models of care for Aboriginal people in the Australian state New South Wales, and considers Aboriginal palliative care needs by reflecting on recent literature and lessons derived from Aboriginal consultation. Aboriginal people in Australia account for a very small proportion of the population, have poorer health outcomes and their culture demonstrates a clear resistance to accessing mainstream health services which are viewed as powerful, isolating and not relevant to their culture, way of life, family and belief systems. Aboriginal people regard their land as spiritual and their culture dictates that an Aboriginal person needs to know their origins, emphasising the value placed on kin and also demonstrating a strong desire to remain within their own country. Currently Aboriginal people tend to not access palliative care services in mainstream facilities; and there is very little data on Aboriginal admissions to palliative care centres. Over the last two decades only two models of palliative care focusing on and developed in Aboriginal communities have been implemented. The seminal contribution to Aboriginal Palliative Care was in the form of a resource kit developed to support palliative care providers to examine their practice for cultural appropriateness for Aboriginal and Torres Strait Islanders. The 'living model' coming from this project is adaptive and flexible, enabling implementation in different Aboriginal country as a participative process with community input. The Australian government's National Indigenous Palliative Care Needs Study similarly indicated that Australian empirical research on Aboriginal palliative care service provision is in its infancy, and comprehensive data on the rates of Aboriginal access to palliative care services did not exist. What literature does exist is drawn together in an argument for the development and need for culturally specific Aboriginal palliative care models, which are culturally appropriate, locally accessible and delivered in collaboration and partnership with Aboriginal controlled health services. This is essential because Aboriginal people are a minority cultural group who are disconnected from mainstream health service delivery, and have a sense of cultural isolation when accessing mainstream services. It is preferable that palliative care is delivered in a collaboration between Aboriginal Controlled Health Service and mainstream palliative care services to ensure a dignified end of life for the Aboriginal person. These collaborations and partnerships are fundamental to ensure that a critical mass of Aboriginal clinicians are trained and experienced in end of life care and palliation. Developing palliative care programs within Aboriginal communities and training Aboriginal Health Workers, promoted and developed in partnership with the Aboriginal community, are important strategies to enhance palliative care service provision. Further partnerships should be championed in this collaborative process, acknowledging a need for palliative care models that fit with Aboriginal peoples' community values, beliefs, cultural/ spiritual rituals, heritage and place. PMID:23651262

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

    PubMed Central

    2013-01-01

    Background Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data. Results Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. Conclusion Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team. PMID:23875957

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

    PubMed

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

    2014-10-10

    Palliative care is a fundamental component of cancer care. As part of the 2011 to 2012 Leadership Development Program (LDP) of the American Society of Clinical Oncology (ASCO), a group of participants was charged with advising ASCO on how to develop a service model integrating palliative care throughout the continuum of cancer care. This article presents the findings of the LDP group. The group focused on the process of palliative care delivery in the oncology setting. We identified key elements for models of palliative care in various settings to be potentially equitable, sustainable, feasible, and acceptable, and here we describe a dynamic model for the integrated, simultaneous implementation of palliative care into oncology practice. We also discuss critical considerations to better integrate palliative care into oncology, including raising consciousness and educating both providers and the public about the importance of palliative care; coordinating palliative care efforts through strengthening affiliations and/or developing new partnerships; prospectively evaluating the impact of palliative care on patient and provider satisfaction, quality improvement, and cost savings; and ensuring sustainability through adequate reimbursement and incentives, including linkage of performance data to quality indicators, and coordination with training efforts and maintenance of certification requirements for providers. In light of these findings, we believe the confluence of increasing importance of incorporation of palliative care education in oncology education, emphasis on value-based care, growing use of technology, and potential cost savings makes developing and incorporating palliative care into current service models a meaningful goal. PMID:25199756

  5. Palliative or Comfort Care

    MedlinePlus

    ... illness. Medicare, Medicaid, Veterans Health Administration benefits, and private health insurance cover many palliative care services. Many hospitals provide palliative care, and it can be provided in nursing homes and in your home as well. Resources Palliative Care, The Relief You Need When ...

  6. 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 ...

  7. Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care

    PubMed Central

    Meier, Diane E

    2011-01-01

    Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Findings: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. PMID:21933272

  8. Palliative care and neurology

    PubMed Central

    Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

    2014-01-01

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

  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. Provision of palliative care and pain management services for oncology patients.

    PubMed

    Marchetti, Paolo; Voltz, Raymond; Rubio, Carmen; Mayeur, Didier; Kopf, Andreas

    2013-03-01

    Early initiation of palliative care to address pain and other symptoms offers the potential to improve quality of life for patients with cancer. The approaches to implementing and delivering palliative care and pain management services vary depending on patient needs, available resources, provider training, and clinical setting. This article describes the experiences in developing programs in which the need for early palliative care or pain management services for patients with cancer was recognized. In each case, collaborative efforts, careful planning, administrative support, and ample time were needed to implement such services. To tailor services based on the available resources, different approaches were taken, including structuring of services within oncology units; creation of an integrated partnership between oncology and palliative care departments; establishment of a multidisciplinary comprehensive service; and incorporation of nurse-based pain services to address acute, chronic, and cancer pain. These examples offer insights into how to optimize delivery of services in a variety of settings with varying resources. PMID:23520182

  11. Out-of-hours palliative care in the UK: perspectives from general practice and specialist services.

    PubMed

    Munday, Daniel; Dale, Jeremy; Barnett, Mandy

    2002-01-01

    Palliative care within the community requires well coordinated multidisciplinary teamworking, involving both primary and secondary care practitioners. 'Out-of-hours' periods are a potentially problematic time for delivery of high quality care. We report on two national surveys-one of medical directors of out-of-hours general practitioner cooperatives, the other of medical directors of specialist palliative care units. The aim was to describe general practitioners' and specialists' perspectives on the availability and scope of community nursing and specialist palliative care services. The results point to wide variation in service provision within the community. The two groups differed strikingly in their perceptions, the general practitioners being much less positive than the specialists about the availability of specialist advice and admission to specialist units out of hours. Equitable out-of-hours palliative care services of high quality are unlikely to be achieved without dialogue between primary and secondary care based providers, local needs assessment and adequate resourcing. PMID:11773348

  12. Palliative Care: Cure Versus Palliation

    PubMed Central

    Nixon, Alan J.

    1986-01-01

    The decision to ease symptoms without curing causes stress in physician and patient alike. Palliative care must involve the patient, family and family physician. Proper care will involve awareness of the physician's and society's attitudes to death and dying, education, useful denial, when to palliate, patient selection, and palliative care as an alternative to ‘curative’ therapy. The role of the family physician is defined, and check lists are presented to facilitate patient selection. The patient must maintain control of the situation with the physician as informant, advisor and coordinator of care for the terminal phase of the patient's life. PMID:21274244

  13. Perceptions of the impact of health-care services provided to palliative care clients and their carers.

    PubMed

    Connell, Tanya; Fernandez, Ritin S; Griffiths, Rhonda; Tran, Duong; Agar, Meera; Harlum, Janeane; Langdon, Rachel

    2010-06-01

    A wide range of services are provided to palliative care clients to alleviate pain and improve their quality of life. The purpose of this study was to explore the perceptions of clients and their carers regarding palliative care services in New South Wales, Austalia. Ten patients and their carers (n = 7) were randomly selected from a sample of palliative care clients and were informed of the study and interviewed. Interview data were coded independently by three researchers and thematic analysis was undertaken. The themes identified were similar for both clients and carers and included: access to services; service provision; impact on way of life; usefulness of services; and staffing. An additional theme identified by clients was the burden of caregiving on carers. Knowledge of perceptions and concerns of client and carers is important to consider when planning palliative care services. PMID:20925290

  14. Palliative Care Services for Indian Migrants in Australia: Experiences of the Family of Terminally Ill Patients

    PubMed Central

    Shanmugasundaram, Sujatha; O'Connor, Margaret

    2009-01-01

    Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups. PMID:20606861

  15. 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 to meet the palliative care needs of the population. PMID:26231421

  16. Understanding palliative nursing care.

    PubMed

    Geoghan, Darlene A

    2008-01-01

    Palliative care is care that is given to patients and their significant others who are experiencing life-threatening or life-altering illnesses by providing emotional, spiritual, and physical support. Patients can continue to receive aggressive medical treatment while receiving palliative care and recovery is possible. Pain control is a top priority in palliative care. Non-pharmacological interventions have also been shown to be effective in palliative care as well. Palliative care is truly a holistic, collaborative practice engaging many disciplines in the care of the patient and their love ones. PMID:18491833

  17. Reaching out to Ray: delivering palliative care services to a homeless person in Melbourne, Australia.

    PubMed

    MacWilliams, Judy; Bramwell, Michael; Brown, Sally; O'Connor, Margaret

    2014-02-01

    Most terminally ill people express a preference for dying at home. Within established models of palliative care, achieving death at home is a particular challenge for homeless people. This paper describes a quality-improvement project undertaken by a community-based palliative care service in Melbourne, Australia, to understand homeless people's palliative care needs and the challenges that workers face. Six semi-structured interviews with workers in hospital and community-based settings were undertaken and a case study documented. The results were used to initiate discussion about how policy and protocols for the community-based palliative care service might serve this population more effectively. The findings confirmed that homeless people have complex psychosocial and medical needs. They may be periodically uncontactable or living in unsafe settings, experience isolation from social support networks, and have issues of compliance with treatment protocols exacerbated by mental health problems and/or substance abuse. Service providers had particular challenges in meeting the palliative care needs of homeless people. A flexible, compassionate, and coordinated response is required, and more work is needed to explore how the needs of this particular group can be met. PMID:24577214

  18. Innovative palliative care in Edmonton.

    PubMed Central

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

    1997-01-01

    PROBLEM BEING ADDRESSED: Access to palliative care in Edmonton has been hampered by uneven development, poor distribution of services, and more recently, economic restraints. Family physicians' involvement in palliative care has been hindered by the variety of access points, poor coordination, and inadequate reimbursement for time-consuming and difficult patient care situations. OBJECTIVE OF PROGRAM: To provide high-quality palliative care throughout Edmonton in all settings, with patients able to move easily throughout the components of the program; to lower costs by having fewer palliative care patients die in acute care facilities; and to ensure that family physicians receive support to care for most patients at home or in palliative care units. MAIN COMPONENTS OF PROGRAM: The program includes a regional office, home care, and consultant teams. A specialized 14-bed palliative care unit provides acute care. Family physicians are the primary caregivers in the 56 palliative continuing care unit beds. CONCLUSIONS: This program appears to meet most of the need for palliative care in Edmonton. Family physicians, with support from consulting teams, have a central role. Evaluation is ongoing; an important issue is how best to support patients dying at home. Images p1984-a p1986-a PMID:9386885

  19. 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. PMID:21298761

  20. A multifaceted approach to spreading palliative care consultation services in California public hospital systems.

    PubMed

    Brousseau, Ruth Tebbets; Jameson, Wendy; Kalanj, Boris; Kerr, Kathleen; O'Malley, Kate; Pantilat, Steven

    2012-01-01

    Historically, California's 17 public hospital systems-those that are county owned and operated, and those University of California medical centers with the mandate to serve low income, vulnerable populations-have struggled to implement Palliative Care Consultation Services (PCCS)-this, despite demonstrated need for these services among the uninsured and Medicaid populations served by these facilities. Since 2008, through a collaborative effort of a foundation, a palliative care training center, and a nonprofit quality improvement organization, the Spreading Palliative Care in Public Hospitals initiative (SPCPH) has resulted in a 3-fold increase in the number of California public hospitals providing PCCS, from 4 to 12. The SPCPH leveraged grant funding, the trusted relationships between California public hospitals and their quality improvement organization, technical assistance and training, peer support and learning, and a tailored business case demonstrating the financial/resource utilization benefits of dedicated PCCS. This article describes the SPCPH's distinctive design, features of the public hospital PCCS, patient and team characteristics, and PCCS provider perceptions of environmental factors, and SPCPH features that promoted or impeded their success. Lessons learned may have implications for other hospital systems undertaking implementation of palliative care services. PMID:23552204

  1. Palliative day care: a qualitative study of service users' experiences in the United Kingdom.

    PubMed

    Hyde, Val; Skirton, Heather; Richardson, Janet

    2011-06-01

    In many countries, specialist palliative day care for patients with life-limiting conditions is provided by specific teams of professionals from a range of relevant disciplines. During 2006 to 2007, the day care services at a hospice in the U.K. were redesigned so that specialist palliative care sessions replaced the existing long-established, traditional day care model. The purpose of this study was to enhance the understanding of those aspects of the service that the users valued most (the "X-factor"). Qualitative data were collected via semistructured interviews with 29 patients and eight carers. These data were subjected to a framework analysis. The users of the service used poignant and powerful words to describe the special qualities that they valued, some phrasing it as the X-factor. The data are presented under three themes: the quality of the staff; the sense of community; and relationships. Of these, the relationships between and within the staff and patient groups held the greatest significance for the patients. Service providers need to recognize that opportunities for the formation of relationships between the patients, staff, and carers are of utmost importance when designing palliative day care services. PMID:21595812

  2. 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. PMID:21628042

  3. Education in palliative care.

    PubMed

    Weissman, David E; Blust, Linda

    2005-02-01

    Palliative care education includes the domains of pain and nonpain symptom management, communications skills, ethics and law, psychosocial care, and health systems. Defining key attitudes, knowledge, and skill objectives, and matching these to appropriate learning formats, is essential in educational planning. Abundant educational resource material is available to support classroom and experiential palliative care training. PMID:15639043

  4. Posthumous Reproduction and Palliative Care

    PubMed Central

    Quinn, Gwendolyn; Bower, Bethanne; Zoloth, Laurie

    2011-01-01

    Abstract Posthumous reproduction is an issue fraught with legal, ethical, religious, and moral debate. The involvement of the hospice and palliative care community in this debate may be peripheral due to the fact that other health care professionals would be actually delivering the services. However, the hospice and palliative care community are more likely to treat patients considering posthumous reproduction as they near the end of their lives. This article provides the hospice and palliative care community with a review of the medical, ethical, and legal considerations associated with posthumous reproduction. Having knowledge of these issues, and a list of available resources, will be useful if hospice and palliative care staff find themselves facing a patient or family that is considering posthumous reproduction. PMID:21711126

  5. Euthanasia in palliative care journals.

    PubMed

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

    2002-06-01

    With the growth of palliative care services, interest in moral issues also seems to be growing. The controversial issue of euthanasia significantly provokes moral reflection on the care for dying patients. This article presents an analysis of the moral issue of euthanasia as it is discussed by the palliative care community in the professional journals of palliative care. Initially, the analysis will focus on describing the characteristics of the publications about euthanasia and the attitudes expressed in the articles towards this practice. Second, attention will be paid to the description of the uses of the term euthanasia in the various articles and also how frequently such uses occur. Third, the various arguments in support for or against a place for euthanasia in palliative care will be discussed. PMID:12067776

  6. "They should come out here ...": research findings on lack of local palliative care services for Australian aboriginal people.

    PubMed

    McGrath, Pam; Holewa, Hamish; Kail-Buckley, Stasia

    2007-01-01

    Although Aboriginal Australians experience morbidity and mortality rates far greater than that of the wider Australian population, to date, their access to culturally appropriate palliative care services has remained unexplored. This article provides findings from an Australian National Health and Medical Research funded study that documents the availability of palliative care services to Aboriginal peoples of the Northern Territory, Australia. The data were collected through a series of open-ended, qualitative interviews with a cross section of Aboriginal peoples and health professionals conducted during a 2-year period. The findings provide an overview of the palliative care services that are presently available and reflect a serious lack of local, culturally appropriate palliative care services. This research shows the similarities in the struggles and difficulties faced by Australian Aboriginals and Indigenous peoples worldwide. The hope is that the suggestions put forward for improvement will one day be useful for the world's Indigenous peoples. PMID:17502434

  7. 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

  8. Palliative care - managing pain

    MedlinePlus

    End of life - pain management; Hospice - pain management ... or if you have side effects from your pain treatments. ... Bookbinder M, McHugh ME. Symptom management in palliative care and ... Medicine . 1st ed. Philadelphia, PA: Elsevier Saunders; 2008:chap ...

  9. [Palliative care in neurology].

    PubMed

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

    2015-07-01

    Palliative care in neurology is characterized by the need of taking into account some distinguishing features which supplement and often differ from the general palliative approach to cancer or to severe organ failures. Such position is emphasized by a new concept of palliative assistance which is not limited to the "end of life" stage, as it was the traditional one, but is applied along the entire course of progressive, life-limiting, and disabling conditions. There are various reasons accounting for a differentiation of palliative care in neurology and for the development of specific expertise; the long duration of the advanced stages of many neurological diseases and the distinguishing features of some clinical problems (cognitive disorders, psychic disorders, etc.), in addition to the deterioration of some general aspects (nutrition, etc.), make the general criteria adopted for cancer, severe respiratory, hepatic or renal failures and heart failure inadequate. The neurological diseases which could benefit from the development of a specific palliative approach are dementia, cerebrovascular diseases, movement disorders, neuromuscular diseases, severe traumatic brain injury, brain cancers and multiple sclerosis, as well as less frequent conditions. The growing literature on palliative care in neurology provides evidence of the neurological community's increasing interest in taking care of the advanced and terminal stages of nervous system diseases, thus encouraging research, training and updating in such direction. This document aims to underline the specific neurological requirements concerning the palliative assistance. PMID:26228722

  10. Palliative care in pediatrics.

    PubMed

    Himelstein, Bruce P

    2005-12-01

    Palliative care for children is not about dying; rather, it is about helping children and families to live to their fullest and to restore wholeness while facing complex medical conditions. Family centered pediatric palliative care is the art and science of improving quality of life and attending to suffering for children with life-threatening conditions; the basic principles are presented and discussed in this article. PMID:16310666

  11. Perspectives in palliative care?

    PubMed

    Tueni, Elias

    2008-01-01

    Palliative care is an important issue to both patients and their families. It is a major contributor to the improvement of the quality of life of patients suffering from chronic diseases as well as terminally ill patients. Its importance increases with the aging of our population. Palliative care has met an enormous success in Western countries and particularly in the U.S.A. over the past two decades. In Lebanon we are far behind the international health community in this field. The educational efforts initiated by medical schools are to be applauded but unfortunately very few institutions offer palliative care to their patients in our country. This is mainly due to the lack of support for such an activity from official health organizations and the lack of information among the public concerning the advantages of palliative care. The efforts of medical schools to incorporate palliative care in their teaching programs will be useless if they are not conjugated with an integration of palliative care in every day's clinical practice. PMID:19534083

  12. Impact of an oncology palliative care clinic on access to home care services.

    PubMed

    Jang, Raymond W; Burman, Debika; Swami, Nadia; Kotler, Jennifer; Banerjee, Subrata; Ridley, Julia; Mak, Ernie; Bryson, John; Rodin, Gary; Le, Lisa W; Zimmermann, Camilla

    2013-08-01

    Home care (HC) is important for patients with cancer as performance status declines. Our study of 1224 patients at a Canadian cancer center examined the impact of an oncology palliative care clinic (OPCC) on HC referral. The HC referral frequency was calculated before and after the first OPCC consultation, in total and according to performance status (Palliative Performance Scale, PPS). Characteristics associated with HC referral were investigated. After the first OPCC consultation, there was an increase in HC referral from 39% (477 of 1224; 49% of those with PPS ≤60) to 69% (841 of 1224; 88% of those with PPS ≤60). Factors independently associated with HC referral were poor PPS (P < .001) and older age (P = .003). Thus OPCC involvement resulted in markedly increased HC referrals, particularly for older patients with poor performance status. PMID:22777408

  13. Culturally relevant palliative care.

    PubMed

    Payne, Richard

    2015-05-01

    The journey to excellence in palliative care practice is to recognize the three identities of patients, refine skills in assessment to understand these interrelated dimensions of personhood, and hone the practices of caring to deliver truly comprehensive and personalized care. These practices require clinicians to first connect to persons with illness on a human-human level. Being fully present and engaged with patients is critical to practicing high-quality palliative care. Clinicians must encourage and elicit the story of the illness and the life of the person experiencing the illness. PMID:25920062

  14. 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…

  15. Implementing Palliative Care Studies

    PubMed Central

    Whalen, Giles F.; Kutner, Jean; Byock, Ira; Gerard, Dava; Stovall, Ellen; Sieverding, Pauline; Ganz, Patricia A.; Krouse, Robert S.

    2007-01-01

    This session focused on issues related to implementation of randomized clinical trials in palliative care studies. Topics discussed included what kind of clinical sites and patient populations were suitable, what types of clinical investigators (clinical specialty) should be involved in or lead the studies, what multi-site mechanisms could be employed to conduct the trials, and what funding issues were related to these studies. A trial of operative versus nonoperative management for small bowel obstruction caused by recurrent intra-abdominal cancer was considered. The feasibility of such a trial was examined in terms of whether there was “equipoise” for a majority of likely investigators in the field around the trial question, what other issues might impact accrual to the trial, and how many patients would be required to answer which of these two treatment arms was better. This last question is related to selection of a primary endpoint for the trial and was a modestly contentious issue for the trial design group. Both sensible compromises in endpoint selection and the education of the community of investigators for a particular randomized trial in palliative care are crucial steps for successful implementation. A major conclusion of this session is that implementation considerations are intimately related to the architecture of a specific trial and should be addressed practically and early in the design phase of any randomized trial addressing a palliative care question. In this respect, randomized trials in palliative care are no different than in other fields. PMID:17544245

  16. Palliative Care in Critical Rural Settings.

    PubMed

    Mayer, Dorothy Dale M; Winters, Charlene A

    2016-02-01

    The United States has 1332 critical access hospitals. These hospitals have fewer than 25 beds each and a mean daily census of 4.2 patients. Critical access hospitals are located in rural areas and provide acute inpatient services, ambulatory care, labor and delivery services, and general surgery. Some, but not all, critical access hospitals offer home care services; a few have palliative care programs. Because of the millions of patients living with serious and life-threatening conditions, the need for palliative care is increasing. As expert generalists, rural nurses are well positioned to provide care close to home for patients of all ages and the patients' families. A case report illustrates the role that nurses and critical access hospitals play in meeting the need for high-quality palliative care in rural settings. Working together, rural nurses and their urban nursing colleagues can provide palliative care across all health care settings. PMID:26830182

  17. Grief and Palliative Care: Mutuality

    PubMed Central

    Moon, Paul J

    2013-01-01

    Grief and palliative care are interrelated and perhaps mutually inclusive. Conceptually and practically, grief intimately relates to palliative care, as both domains regard the phenomena of loss, suffering, and a desire for abatement of pain burden. Moreover, the notions of palliative care and grief may be construed as being mutually inclusive in terms of one cueing the other. As such, the discussions in this article will center on the conceptualizations of the mutuality between grief and palliative care related to end-of-life circumstances. Specifically, the complementarity of grief and palliative care, as well as a controvertible view thereof, will be considered. PMID:25278758

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

    MedlinePlus

    ... Palliative Care Questions and Answers Question Palliative Care Hospice Care Who can receive this care? Anyone with a ... Advance Palliative Care: www.getpalliativecare.org Search National Hospice and Palliative Care Organization, www.nhpco.org Web site powered by ...

  19. Palliative care and pulmonary rehabilitation.

    PubMed

    Janssen, Daisy J A; McCormick, James R

    2014-06-01

    Numerous barriers exist to the timely introduction of palliative care in patients with advanced chronic obstructive pulmonary disease (COPD). The complex needs of patients with advanced COPD require the integration of curative-restorative care and palliative care. Palliative care and pulmonary rehabilitation are both important components of integrated care for patients with chronic respiratory diseases. Pulmonary rehabilitation provides the opportunity to introduce palliative care by implementing education about advance care planning. Education about advance care planning addresses the information needs of patients and can be an effective strategy to promote patient-physician discussion about these issues. PMID:24874135

  20. 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

  1. Palliative care in cardiopulmonary transplantation.

    PubMed

    McKenna, Maria; Clark, Stephen C

    2015-12-01

    Cardiopulmonary transplantation is a life-prolonging therapy available to a select population of patients with cardiac or respiratory failure. Transplantation is associated with significant morbidity, mortality and unmet palliative care need. Despite recommendations that palliative care should be a core component of the heart and lung transplant process, collaboration within clinical practice is extremely rare. A key reason for this is the misperception among patients, their families and transplant clinicians, that palliative care is analogous with end of life care. Other challenges include prognostication, communication, and the balance of hope and reality. We suggest a change in clinical practice within cardiopulmonary transplantation, whereby palliative care takes place alongside active management. Greater partnership working will demonstrate clinical credibility and highlight the impact of palliative care interventions. Education is required to address current misperceptions and further research should explore the effect of initiatives to improve palliative care provision for this patient group. PMID:25812577

  2. 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

  3. What Are Physicians' Reasons for Not Referring People with Life-Limiting Illnesses to Specialist Palliative Care Services? A Nationwide Survey

    PubMed Central

    Beernaert, Kim; Deliens, Luc; Pardon, Koen; Van den Block, Lieve; Devroey, Dirk

    2015-01-01

    Background Many people who might benefit from specialist palliative care services are not using them. Aim We examined the use of these services and the reasons for not using them in a population in potential need of palliative care. Methods We conducted a population-based survey regarding end-of-life care among physicians certifying a large representative sample (n = 6188) of deaths in Flanders, Belgium. Results Palliative care services were not used in 79% of cases of people with organ failure, 64% of dementia and 44% of cancer. The most frequently indicated reasons were that 1) existing care already sufficiently addressed palliative and supportive needs (56%), 2) palliative care was not deemed meaningful (26%) and 3) there was insufficient time to initiate palliative care (24%). The reasons differed according to patient characteristics: in people with dementia the consideration of palliative care as not meaningful was more likely to be a reason for not using it; in older people their care needs already being sufficiently addressed was more likely to be a reason. For those patients who were referred the timing of referral varied from a median of six days before death (organ failure) to 16 days (cancer). Conclusions Specialist palliative care is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing palliative care needs. This would imply that the safeguarding of palliative care skills in this regular ‘general’ care is an essential health policy priority. PMID:26356477

  4. 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 care model, while simultaneously providing direction for team-based program delivery and sustainability for other jurisdictions. PMID:23984638

  5. 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 pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. Authors' conclusions The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies. PLAIN LANGUAGE SUMMARY Effectiveness and cost-effectiveness of home-based palliative care services for adults with advanced illness and their caregivers When faced with the prospect of dying with an advanced illness, the majority of people prefer to die at home, yet in many countries around the world they are most likely to die in hospital. We reviewed all known studies that evaluated home palliative care services, i.e. experienced home care teams of health professionals specialised in the control of a wide range of problems associated with advanced illness – physical, psychological, social, spiritual. We wanted to see how much of a difference these services make to people's chances of dying at home, but also to other important aspects for patients towards the end of life, such as symptoms (e.g. pain) and family distress. We also compared the impact on the costs with care. On the basis of 23 studies including 37,561 patients and 4042 family caregivers, we found that when someone with an advanced illness gets home palliative care, their chances of dying at home more than double. Home palliative care services also help reduce the symptom burden people may experience as a result of advanced illness, without increasing grief for family caregivers after the patient dies. In these circumstances, patients who wish to die at home should be offered home palliative care. There is still scope to improve home palliative care services and increase the benefits for patients and families without raising costs. PMID:23744578

  6. Models of palliative care delivery in the United States

    PubMed Central

    Morrison, R. Sean

    2015-01-01

    Purpose of review To summarize the current United States healthcare system and describe current models of palliative care delivery. Recent findings Palliative care services in the USA have been heavily influenced by the public–private fee-for-service reimbursement system. Hospice provides care for 46% of adults at the end-of-life under the Medicare hospice benefit. Palliative care teams in hospitals have rapidly expanded to provide care for seriously ill patients irrespective of prognosis. To date, over two-thirds of all hospitals and over 85% of mid to large size hospitals report a palliative care team. With the passage of the Patient Protection and Affordable Care Act of 2010, healthcare reform provides an opportunity for new models of care. Summary Palliative care services are well established within hospitals and hospice. Future work is needed to develop quality metrics, create care models that provide services in the community, and increase the palliative care workforce. PMID:23635879

  7. [Palliative care in otolaryngology].

    PubMed

    Büntzel, J

    2014-05-01

    The aim of palliative care is to improve the quality of life (QOL) of patients with a limited life expectancy in a comprehensive multidisciplinary approach. It encompasses consideration of medical, physical, psychosocial and spiritual problems, including treatment and help from a team of various professionals. Palliative care often extents to the patient's families and may continue after the death of the patient. Half of all head and neck cancer patients will die of their malignancy within 5 years of diagnosis. The primary medical issues affecting QOL at the end of life are communication problems due to laryngectomy or tracheostomy, disturbed eating and drinking due to surgery and radiotherapy, edematous changes of the face and neck with resultant functional and cosmetic consequences, as well as strong-smelling ulcerated wounds, which often lead to social isolation. General symptoms occurring at the end of life include pain, anxiety, different types of dyspnea and acute bleeding. All therapeutic approaches applied during the last phase of life must be questioned regarding their real efficacy and side effects. Consideration of the patient's wishes is of the highest priority. PMID:24718562

  8. Palliative care - shortness of breath

    MedlinePlus

    ... to control shortness of breath: Call your doctor, palliative care team, or hospice nurse for advice Call 911 ... Bicanovsky L. Comfort care: symptom control in the dying. In: Walsh ... . 1st ed. Philadelphia, PA: Elsevier Saunders; 2008:chap 181.

  9. The palliative care clinical nurse consultant: an essential link.

    PubMed

    O'Connor, Margaret; Chapman, Ysanne

    2008-01-01

    This study describes the role of acute hospital palliative care nurse consultants and makes recommendations about future directions for the role development of this role. While the palliative care nurse consultant role is accepted in the acute setting there is little evidence or literature about what contributes to the success of this role. A three-phase study was undertaken to describe the role of palliative care nurse consultants in acute hospitals in Melbourne, Australia. The first phase of the three-phase study, involving in-depth qualitative interviews with the palliative care nurse consultants, is reported in this article. Using open-ended semi-structured questions, 10 palliative care nurse consultants were interviewed using open-ended questions about aspects of their role and the interviews were thematically analysed. Four main themes were identified that clarified the role; being the internal link; being the lynch pin; being responsive and being challenged. The palliative care nurse consultants were the first point of introduction to palliative care and thus they saw a significant role in introducing the concept of palliative care to those requiring palliative care, their families and others. They are an important link between the settings of care required by people accessing palliative care-acute, in-patient palliative care and community care. The palliative care nurse consultants saw themselves in leadership positions that in some ways defy boundaries, because of the inherent complexity and diversity of the role. The palliative care nurse consultants' role appears to be pivotal in providing expert advice to staff and people requiring palliative care, and connecting palliative care services both within the hospital and to external services. PMID:19112925

  10. [Quality management in palliative care].

    PubMed

    Cottier, Christoph

    2012-02-01

    The author, former chief of a medical department and experienced in quality management, describes the development of quality standards by palliative ch, the Swiss Society for Palliative Care. These standards are the basis for explicit quality-criteria. The performance of an institution for palliative care is evaluated against these criteria, during an audit and peer review. Further information is given concerning the label Quality in Palliative Care. The author describes the importance oft the PDCA-cycle as an instrument for permanent improvement. Institutions with little experience in quality management are adviced to start on a smaller scale and use internal audits. Finally the author gives some thoughts as to the limitations of quality management in palliative care. PMID:22334204

  11. Team Networking in Palliative Care

    PubMed Central

    Spruyt, Odette

    2011-01-01

    If you want to travel quickly, go alone. But if you want to travel far, you must go together. African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361

  12. Team networking in palliative care.

    PubMed

    Spruyt, Odette

    2011-01-01

    "If you want to travel quickly, go alone. But if you want to travel far, you must go together". African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361

  13. 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. PMID:25492970

  14. Advancing palliative care as a human right.

    PubMed

    Gwyther, Liz; Brennan, Frank; Harding, Richard

    2009-11-01

    The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as a matter of priority, [these] obligations." This article describes recent advocacy activities and explores practical strategies for the palliative care community to use within a human rights framework to advance palliative care development worldwide. PMID:19783399

  15. 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)

  16. Palliative Care Version 1.2016.

    PubMed

    Levy, Michael; Smith, Thomas; Alvarez-Perez, Amy; Back, Anthony; Baker, Justin N; Beck, Anna C; Block, Susan; Dalal, Shalini; Dans, Maria; Fitch, Thomas R; Kapo, Jennifer; Kutner, Jean S; Kvale, Elizabeth; Misra, Sumathi; Mitchell, William; Portman, Diane G; Sauer, Todd M; Spiegel, David; Sutton, Linda; Szmuilowicz, Eytan; Taylor, Robert M; Temel, Jennifer; Tickoo, Roma; Urba, Susan G; Weinstein, Elizabeth; Zachariah, Finly; Bergman, Mary Anne; Scavone, Jillian L

    2016-01-01

    The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. The NCCN Guidelines are intended to provide guidance to the primary oncology team on the integration of palliative care into oncology. The NCCN Palliative Care Panel's recommendations seek to ensure that each patient experiences the best quality of life possible throughout the illness trajectory. Accordingly, the NCCN Guidelines outline best practices for screening, assessment, palliative care interventions, reassessment, and after-death care. PMID:26733557

  17. A review of an out-of-hours telephone support service for palliative care patients and their families.

    PubMed

    Carlebach, Sarit; Shucksmith, Janet

    2010-09-01

    Offering people at the end stages of life the chance to die in their own homes is acknowledged good practice and can bring comfort to terminally ill people, but it can also be a hard choice to sustain. Carers may find it extremely difficult to cope with the emotional ordeal of losing a loved one and dealing with the medical problems that are involved but their voices are infrequently heard. This study reports an evaluation of an out-of-hours service operating in one primary care trust in north east England, and focuses on the use of a telephone support service, which backed up domiciliary visits by specialist palliative care nurses. Interviews, focus groups and an open-ended questionnaire were carried out with 27 participants. Results revealed that staff, patients and carers appreciated being able to telephone the service (reactive). In addition carers felt particularly well supported by the service staff who proactively telephoned them on an agreed basis as part of the highly individualized telephone monitoring scheme. Such services support the call for the creation of a whole system approach for both palliative care patients and their carers. PMID:20871499

  18. Issues in Dutch palliative care: readjusting a distorted image.

    PubMed

    Gordijn, B; Visser, A

    2000-08-01

    This issue presents a review of several issues in Dutch palliative care, paying attention to readjusting a distorted image due to the euthanasia practice in the Netherlands. A few articles stress the evolution of palliative care (especially in the UK and the Netherlands), developed palliative care services in the Netherlands, and new developments in the Netherlands concerning the prevention of euthanasia through palliative care. Also the needs concerning palliative care for children as well as for chronic psycho-geriatrics patients are presented. Further attention is paid to the organisation of palliative care, focusing at evaluative research on palliative support teams, caring for caregivers (experiences and evaluation of interventions for palliative care teams), and effects of transmural care on coordination and continuity of care. Finally, some articles focus on ethical considerations in the treatment of pain in hospice movement, ethical evaluation of clinical trials in palliative care, and the role of informed consent in palliative radiotherapy, stressing the participation of patients and proxies in treatment decisions. Conclusions are presented on the consequences for educational and counselling aspects of palliative care. PMID:10900361

  19. Spirituality in geriatric palliative care.

    PubMed

    Puchalski, Christina M

    2015-05-01

    This article presents an overview of spirituality as an essential domain of geriatrics palliative care, and provides guidelines for clinicians to diagnose spiritual distress and to integrate spirituality into their clinical practice. PMID:25920059

  20. Integrating palliative care into national policies.

    PubMed

    Stjernswärd, Jan; Foley, Kathleen M; Ferris, Frank D

    2007-05-01

    Good policies lay the groundwork for an effective health care system and society. They facilitate the implementation of palliative care programs aimed at providing care for all people in need of these services, and they ensure equitable access to affordable medications and therapies. The lack of good policies can lead to unnecessary suffering and costs for patients, families, and society. Three-quarters of cancer patients worldwide are incurable when diagnosed. Because the size of the problem--and the suffering associated with cancer--is enormous, development of a national cancer control policy is an effective point of entry to begin integrating palliative care into a country's health care system. To be comprehensive, every cancer center must include palliative care. Ideally, palliative care is incorporated as a priority within all aspects of each country's national health plan, so that all patients living with or dying from any chronic disease may have their suffering relieved, including children and the elderly. To this end, policies that address essential medicines must include a list of palliative care medications. Supplies of affordable, generic medications that are "equally efficient" must be adequate and available throughout the country wherever patients live (especially opioids for pain control). PMID:17482040

  1. The challenge of palliative care.

    PubMed

    Twycross, Robert G

    2002-08-01

    Palliative care is patient-centered, rather than disease-focused; accepts the inevitability of death while simultaneously is life-affirming; addresses psychological, social, and spiritual concerns as well as physical ones; and is best delivered by a multiprofessional team working in partnership with patients and their families. Palliative care stresses the importance of "appropriate treatment" and the need for doctors not to prescribe a lingering death. Even though there is no chance of cure, there is much scope for psychosocial and spiritual healing, and often some scope for physical rehabilitation. Palliative care is emotionally demanding for professional carers, and strategies for personal support are necessary. The World Health Organization has played a major part in the ongoing campaign to improve cancer pain management and to make medicinal morphine more widely available. A systematic approach to pain and symptom management is essential, and there is need for specific training for all health professionals. In most countries, for palliative care to take root, there is need for a charismatic "champion". However, for palliative care to flourish, there is need for a governmental commitment to its development. Charisma continues to be necessary to prevent palliative care being strangled by an over-rigid bureaucracy, but incorporation into existing health delivery systems is necessary to prevent it being stillborn through lack of resources. PMID:12202981

  2. 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. PMID:25689627

  3. 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 Germany. PMID:20673326

  4. [Xerostomia in palliative care].

    PubMed

    Feio, Madalena; Sapeta, Paula

    2005-01-01

    Xerostomia is the subjective feeling of mouth dryness, caused or not by function lowering of salivary glands, with decrease of saliva quality or quantity. It's a frequent symptom in palliative care patients and its prevalence is referred to be 60% to 88% in advanced and progressive oncological disease patients. Xerostomia has physical, social and psychological consequences. Saliva plays an important role in maintaining the best physiological conditions of mouth. Besides humidifying the oral cavity tissues, its lubricating properties help swallowing, talking and prevents other damages caused by mechanical and noxious microbiological agents. Xerostomia is caused by three basic mechanisms: factors that compromise the salivary centre, factors related to the autonomic stimulation or factors related to salivary glands themselves. The diagnosis is mainly clinical. Mouth condition must be thoroughly evaluated. If justified, a quantitative evaluation of saliva secretion, in rest and under stimulation, might be done. The treatment must be oriented by aetiology and directed towards the disease effects in patient comfort and quality of life. During treatment, the use of xerogenic drugs should be controlled, hydration should be promoted and other symptom control measures improved. The symptomatic treatment has three pathways: the increasing of saliva production by mechanical, gustatory or pharmacological stimulation; the using of saliva substitutes and the improving of active mouth care. Mechanical stimulation is obtained by chewing gum and gustatory stimulation may be reached by sucking Vitamin C tablets. Pilocarpine is the available drug to improve salivation. A soft diet must be advised, hard and dry food, tobacco and alcoholic beverages should be avoided. It's important that health workers teach patients with xerostomia the best way to get relief and the measures to prevent its complications that could, even more, compromise their quality of life. PMID:16684486

  5. Visioning for secondary palliative care service hubs in rural communities: a qualitative case study from British Columbia's interior

    PubMed Central

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

    2009-01-01

    Background As the populations of many developed nations continue to age at rapid rates it is becoming increasingly important to enhance palliative care service delivery in order to meet anticipated demand. Rural areas face a number of challenges in doing this, and thus dedicated attention must be given to determining how to best enhance service delivery in ways that are sensitive to their particular needs. The purposes of this article are to determine the vision for establishing secondary palliative care service hubs (SPCH) in rural communities through undertaking a case study, and to ascertain the criteria that need to be considered when siting such hubs. Methods A rural region of British Columbia, Canada was selected for primary data collection, which took place over a five-month period in 2008. Formal and informal palliative care providers (n = 31) were interviewed. A purposeful recruitment strategy was used to maximize occupational and practice diversity. Interviews were conducted by phone using a semi-structured guide. Interviews were audio recorded and transcribed verbatim. Data were managed using NVivo8™ software and analyzed thematically, using investigator triangulation to strengthen interpretation. Results Four themes emerged from the dataset: (1) main SPCH features; (2) determining a location; (3) value-added outcomes; and (4) key considerations. It was found that participants generally supported implementing a SPCH in the rural region of focus. Several consistent messages emerged, including that: (1) SPCHs must create opportunities for two-way information exchange between specialists and generalists and communities; (2) SPCHs should diffuse information and ideas throughout the region, thus serving as a locus for education and a means of enhancing training opportunities; and (3) hubs need not be physical sites in the community (e.g., an office in a hospice or hospital), but may be virtual or take other forms based upon local needs. Conclusion Visioning innovation in the provision of palliative care service in rural communities can be enhanced by consultation with local providers. Interviews are a means of determining local concerns and priorities. There was widespread support for SPCH coupled with some uncertainty about means of implementation. PMID:19818139

  6. Palliative care: a public health priority in developing countries.

    PubMed

    Webster, Ruth; Lacey, Judith; Quine, Susan

    2007-01-01

    Palliative care is an emerging specialist discipline worldwide with the majority of services located in developed countries. Developing countries, however, have higher incidences of cancer and AIDS and most of these patients would benefit from palliative care. While there is prominent coverage of this issue in the palliative care literature, there is limited coverage in the specialist public health literature, which suggests that the challenges of palliative care may not yet have been generally recognized as a public health priority, particularly in developing countries. The aim of this article is to introduce the topic of "Palliative care in developing countries" into the specialist public health literature to raise awareness and stimulate debate on this issue among public health professionals and health policy makers, thereby potentially facilitating establishment of palliative care services in developing countries. PMID:17363933

  7. 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

  8. 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

  9. 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 • ...

  10. [Assessment of our home care and home palliative care].

    PubMed

    Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu

    2014-12-01

    We conducted home care and home palliative care from the department of home care. We provided home care services to 190 patients(105 men, 85 women)in October 2013. Their average age was 78.7(range: 32-102)years old, and home care had been underway from 1 day to 8 years, 10 months. Among all participants, 168(88.4%)suffered from malignant diseases, 168 patients had died, and over half of deceased patients(88 out of 168)had died at home. We used opioids for control of cancer pain, carried out home parenteral nutrition(HPN), home enteral nutrition(HEN), percutaneous endoscopic gastrostomy( PEG), and removed pleural effusion and ascites during home care. In order to facilitate the practice of palliative care by the palliative care team, which consists of various medical staff in the hospital, we are giving high priority to education and enlightenment in the hospital. To provide enlightenment, education, and cooperation between regional home care and home palliative care, we are also conducting educational lectures in the regional party of the Iwaki city medical associate, and providing combined educational-medical training for home care and home palliative care by various medical staff. PMID:25595087

  11. Planning elderly and palliative care in Montenegro

    PubMed Central

    McCarthy, Mark; Brajovic, Mina

    2009-01-01

    Introduction Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care. Description The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience. Discussion Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment. Conclusion Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management. PMID:19513178

  12. Pediatric Palliative Care: A Personal Story

    MedlinePlus Videos and Cool Tools

    ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 234 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  13. Is Palliative Care Right for You?

    MedlinePlus

    ... or treatment. Follow Us What Is Palliative Care Definition Pediatric Palliative Care Disease Types Glossary FAQ How to Get It Find a Team Meet the Team Is It Right for You Blog All Posts News Stories Quick ...

  14. Program assessment framework for a rural palliative supportive service.

    PubMed

    Pesut, Barbara; Hooper, Brenda; Sawatzky, Richard; Robinson, Carole A; Bottorff, Joan L; Dalhuisen, Miranda

    2013-01-01

    Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation. PMID:25278757

  15. 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

  16. Public awareness and attitudes toward palliative care in Northern Ireland

    PubMed Central

    2013-01-01

    Background The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland. Methods A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. Results A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested. Conclusions Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care. PMID:24044631

  17. Palliative Care: A Holistic Discipline.

    PubMed

    Greer, Steven; Joseph, Marie

    2016-03-01

    Although mind and body are inextricably interwoven, psychological factors have received insufficient attention within medicine. The biomedical model though necessary is not sufficient. In medicine and particularly in palliative care, a holistic biopsychosocial approach is required. A number of examples from clinical practice in a hospice setting are presented. PMID:26631259

  18. 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

  19. 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 among terminal cancer patients were observed in Taiwan between 2006 and 2014. PMID:26962805

  20. 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

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

    PubMed

    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, collaborative, continuous and patient centered care. Timely referral of cancer patients to palliative care minimises patient and caregiver distress, ensures better quality of life, and provides an appropriate measure for end of life care. PMID:26734188

  2. Pediatric palliative care: starting a hospital-based program.

    PubMed

    Schmidt, Kaye

    2011-01-01

    The value of palliative care in pediatrics has received significant attention over the past 10 years. The American Academy of Pediatrics and the Institute of Medicine published recommendations involving children who have a life-limiting diagnosis in a palliative care program early in their disease process. Palliative care is intended to assure an emphasis on quality of life in addition to the current medical treatment, which may be focused on cure, symptom management, and/or end-of-life care. This article describes one hospital's experience in planning, implementing, and managing a pediatric palliative care program. Implementing a hospital-based palliative care program in a children's hospital can be accomplished through careful planning and analysis of need. Writing an official business plan formalized the request for organizational support for this program, including the mission and vision, plans for how services would be provided, expected financial implications, and initial plans for evaluation of success. PMID:22132573

  3. [Malignant wounds in palliative care].

    PubMed

    Fromantin, Isabelle; Rollot, Florence; Nicodeme, Marguerite; Kriegel, Iréne

    2015-01-01

    In the alsence of effective cancer treatment, malignant wounds evolve. The decisions taken by the multi-disciplinary team with regard to their care vary depending on whether the patient is in the initial, advanced or terminal phase of palliative care. Modern dressings can be used to control bleeding, odours and drainage. The aim is to control the symptoms and improve the quality of life, until its end. PMID:26027186

  4. An evaluation of the domiciliary occupational therapy service in palliative cancer care in a community trust: a patient and carers perspective.

    PubMed

    Kealey, P; McIntyre, I

    2005-07-01

    In the past 20 years there has been considerable growth in the provision of palliative care services. The shift in emphasis from hospice and hospital care to the development of community services has been significant. This enables people to be cared for at home and is in keeping with Government agenda. While this may be beneficial for the patient and fit in with the wishes of the family, it is likely to put heavy demands on the coping resources of individual carers. The views of service users are of paramount importance when discussing service evaluation and patient, family and carer empowerment. This research presents the findings of an evaluation of the domiciliary occupational therapy service provided for patients in the palliative stage of cancer care in North and West Belfast from the perspective of the patients and carers. For the purpose of this study, the palliative stage of cancer care is defined as the point from which the patient is no longer responsive to curative treatment, until death. A sample of 30 patients and their primary informal carers were selected using purposive sampling. A structured interview was carried out with both the patients and their carers to obtain views. Results suggest that although both patients and their carers value the service provided and report high levels of satisfaction, there are gaps identified in service provision and a lack of clear information among patients and their carers about the role of the occupational therapist and the range of services they can provide. There is a need to build upon the good work being done by domiciliary occupational therapists in the area of palliative cancer care and increase education and resources to ensure that a patient-centred, holistic, approach to care is used, addressing both the needs of the patient and their carers. PMID:15952967

  5. 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

  6. 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. PMID:25296488

  7. 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. PMID:21448044

  8. The distinct role of palliative care in the surgical intensive care unit.

    PubMed

    Schulz, Valerie; Novick, Richard J

    2013-12-01

    Palliative care is expanding its role into the surgical intensive care units (SICU). Embedding palliative philosophies of care into SICUs has considerable potential to improve the quality of care, especially in complex patient care scenarios. This article will explore palliative care, identifying patients/families who benefit from palliative care services, how palliative care complements SICU care, and opportunities to integrate palliative care into the SICU. Palliative care enhances the SICU team's ability to recognize pain and distress; establish the patient's wishes, beliefs, and values and their impact on decision making; develop flexible communication strategies; conduct family meetings and establish goals of care; provide family support during the dying process; help resolve team conflicts; and establish reasonable goals for life support and resuscitation. Educational opportunities to improve end-of-life management skills are outlined. It is necessary to appreciate how traditional palliative and surgical cultures may influence the integration of palliative care into the SICU. Palliative care can provide a significant, "value added" contribution to the care of seriously ill SICU patients. PMID:24071600

  9. 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

  10. Surgical palliative care.

    PubMed

    Milch, Robert A

    2005-04-01

    Surgery has always played a pivotal role in care of the patient with cancer, independent of treatment intent. Recent advances have expanded that role, not only in terms of modalities available, but more broadly in terms of the expectations of the surgeon as physician involved in the interdisciplinary care of the patient with symptomatic, incurable disease. PMID:15815961

  11. Palliative care consultation in the ICU #253.

    PubMed

    Campbell, Margaret L; Weissman, David E; Nelson, Judy E

    2012-06-01

    Specialist palliative care consultations, together with integration of palliative care principles into the care of all ICU patients, can improve the patient/family experience, reduce length of stay, improve ICU throughput without increasing mortality, and lower health care costs. PMID:22656058

  12. Managing lymphoedema in palliative care patients.

    PubMed

    Todd, Marie

    The development of lymphoedema in advanced disease is distressing for patients and their carers and can prove difficult to manage for health-care professionals involved in their care. This article will provide an overview of co-morbidities that cancer patients face that will have an impact on the development, progression or management of lymphoedema. The principles of assessing and managing lymphoedema in palliative care patients is presented, based on the Scottish governments action plan Living and Dying Well. The need for collaboration with other members of the multi-disciplinary team to provide the seamless, patient-centred service advocated in this action plan is also presented. PMID:19377392

  13. 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

  14. The Lisbon Challenge: acknowledging palliative care as a human right.

    PubMed

    Radbruch, Lukas; Payne, Sheila; de Lima, Liliana; Lohmann, Diederik

    2013-03-01

    Access to palliative care has been advocated as a human right by international associations, based on the right to the highest attainable standard of physical and mental health. It has been argued that failure to provide palliative care for patients facing severe pain could constitute cruel, inhuman, or degrading treatment. Yet the governments of many countries throughout the world have still not acknowledged a human right to access palliative care for all those who need it. The European Association for Palliative Care (EAPC), the International Association for Hospice and Palliative Care (IAHPC), and Human Rights Watch (HRW) discussed this at the EAPC congress in 2011 and formulated the Lisbon Challenge: Governments must: (1) put in place health policies that address the needs of patients with life-limiting or terminal illnesses; (2) ensure access to essential medicines, including controlled medications, to all who need them; (3) ensure that health care workers receive adequate training on palliative care and pain management at undergraduate levels; and (4) facilitate and promote the implementation of palliative care services as part of available health services. PMID:23368979

  15. 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. PMID:21419263

  16. 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

  17. 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

  18. Palliative care work, between death and discharge.

    PubMed

    O'Connor, Margaret; Peters, Louise; Lee, Susan; Webster, Cecilia

    2005-01-01

    This paper discusses a small study that was undertaken in a palliative care unit (PCU) to demonstrate reasons for the lengthy patient turnover time after the death of a patient. The study arose from a managerial challenge about the PCU's efficiency in comparison to other settings of care. While palliative care services in Australia are loosely funded on a per diem rate, casemix funding models for inpatient services in other settings reward efficiency in terms of length of stay (1). The aim of the study was to undertake a post-death survey, from the nursing perspective, of activities and the time required to deliver follow-up care, as required, to the deceased patient and his/her family. Details of the post-death episode for all patients who died in the PCU over two time periods were collected using a newly designed tool. This paper does not argue for the incorporation of post-death nursing work as a measure of efficiency or quality; rather, it is a demonstration of the type of work and the time involved in carrying out post-death work. This nursing work is an essential but hidden and generally unacknowledged element of palliative care and, not surprisingly, there is a dearth of literature describing the role of the nurse in providing care of the family and others after the patient has died. This project has provided important information about the factors that protract after-death care, and gives some insight into the role of the nurse after a death occurs in a PCU. PMID:16114808

  19. Palliative care of First Nations people

    PubMed Central

    Kelly, Len; Linkewich, Barb; Cromarty, Helen; St Pierre-Hansen, Natalie; Antone, Irwin; Gilles, Chris

    2009-01-01

    ABSTRACT OBJECTIVE To understand cross-cultural hospital-based end-of-life care from the perspective of bereaved First Nations family members. DESIGN Phenomenologic approach using qualitative in-depth interviews. SETTING A rural town in northern Ontario with a catchment of 23 000 Ojibway and Cree aboriginal patients. PARTICIPANTS Ten recently bereaved aboriginal family members. METHODS Semi-structured interviews were conducted, audiotaped, and transcribed. Data were analyzed using crystallization and immersion techniques. Triangulation and member-checking methods were used to ensure trustworthiness. MAIN FINDINGS First Nations family members described palliative care as a community and extended family experience. They expressed the need for rooms and services that reflect this, including space to accommodate a larger number of visitors than is usual in Western society. Informants described the importance of communication strategies that involve respectful directness. They acknowledged that all hospital employees had roles in the care of their loved ones. Participants generally described their relatives’ relationships with nurses and the care the nurses provided as positive experiences. CONCLUSION Cross-cultural care at the time of death is always challenging. Service delivery and communication strategies must meet cultural and family needs. Respect, communication, appropriate environments, and caregiving were important to participants for culturally appropriate palliative care. PMID:19366951

  20. 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

  1. Current trends in palliative heart care.

    PubMed

    Shi, Rongyun

    2016-02-01

    Palliative care is an alternate therapeutic approach that involves specialised medical care of a patient diagnosed with serious life threatening illness like heart failure (HF). The prime aim of the palliative care is to provide patient with relief from the symptoms, pain, physical stress, and mental stress of the diagnosed disease. The palliative care helps in improving the quality of life for both the patient and the family. Advanced HF is a disease process that carries a high burden of symptoms, suffering, and death. Palliative care can complement traditional care to improve symptom amelioration, patient-caregiver communication, emotional support, and medical decision making. The present review summarized all the available on alternative palliative approaches provided to heart patient by a team of physicians, nurses and other healthcare professionals. PMID:25926080

  2. [Palliative care in cancer: elements for debating the guidelines].

    PubMed

    da Silva, Ronaldo Corrêa Ferreira; Hortale, Virginia Alonso

    2006-10-01

    The aim of this study was to present elements for debating guidelines on palliative care programs for cancer. A literature survey searched various databases (MEDLINE, LILACS, and Cochrane Library), homepages of palliative care organizations, publications by renowned authors in this area, reference textbooks on the subject, relevant articles cited by these books, and the thesis/dissertation database of CAPES (the Brazilian Coordinating Body for Training University Level Personnel). The data were grouped into four thematic categories: symptomatic palliation, organization of services, psychosocial characteristics, and spiritual characteristics. The article then proceeds to discuss cancer as a public health problem and its impact on individuals, the concept of palliative care and its context in health care, program models and their guidelines, death and dying, and care and caregivers. The study concludes by discussing the challenges for the Brazilian National Health System in structuring end-of-life programs as a consequence of the population's aging and increasing cancer incidence. PMID:16951877

  3. [Use of music in palliative care].

    PubMed

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

    2011-12-01

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

  4. 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

  5. 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

  6. Using 'gold standards' to raise awareness of palliative care.

    PubMed

    Collins, Frances

    The gold standards framework (GSF) is a practice-based system aimed at improving the organisation and quality of palliative care services for patients who are at home in their last 12 months of life. The aim is for patients to receive a better quality service with greater control over their care and an increased likelihood they will die where they choose. PMID:15631387

  7. 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.

  8. 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)

  9. National Hospice and Palliative Care Organization

    MedlinePlus

    ... Set (NDS) Survey of Team Attitudes and Relationships (STAR) Quality Reporting Staffing Guidelines QAPI Resources Quality Updates ... Care Palliative Care Membership - Join Facebook Twitter LinkedIn YouTube Pinterest RSS ehospice moments my.nhpco Memorial Day - ...

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

    PubMed

    Jamwal, Nisha Rani; Kumar, Senthil P

    2016-01-01

    Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps) in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers' necessities and patients' biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care. PMID:26962291

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

    PubMed Central

    Jamwal, Nisha Rani; Kumar, Senthil P

    2016-01-01

    Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps) in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers’ necessities and patients’ biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care. PMID:26962291

  12. Frailty: an indication for palliative care.

    PubMed

    Raudonis, Barbara M; Daniel, Kathryn

    2010-01-01

    Chronological age alone does not determine the vulnerability or frailty of an older adult.Frailty can, however, profoundly affect the quality of an older adult's life. Frail adults could benefit from palliative care provided by an interdisciplinary team. The principles of palliative care apply to any population that could benefit from a comprehensive, person-centered plan of care from the time of diagnosis through the illness trajectory. This article presents a conceptual overview of frailty and describes its clinical presentation and treatment options, including palliative care, an intervention used by gerontological nurses to improve the quality of life for frail older adults. PMID:20960689

  13. Nurturing humanism through teaching palliative care.

    PubMed

    Block, S; Billings, J A

    1998-07-01

    After many years of neglect by the medical establishment, the discipline of palliative medicine is finally moving into academic health centers (AHCs). While hospice programs have cared for dying patients in the community for years with little input from mainstream medicine, palliative care is gaining a foothold in AHCs, challenging these centers to integrate the hospice approach with biomedicine. The discipline of palliative care promises to be a rich source of learning and growth for physicians-in-training. Teaching about palliative care affirms two essential but vulnerable dimensions of the practice of medicine--the importance of relationship-centered care and the value of doctoring as a source of meaning and growth for physicians. In addition to fostering fundamental humanistic learning, palliative medicine is an excellent vehicle for teaching basic but often neglected clinical competencies, including pain and symptom control, communication, and working as part of a health care team. Because palliative care settings offer extraordinary learning opportunities, the authors recommend that clinical experiences in palliative care be integrated into the core curricula of all medical schools as well as appropriate residency programs. PMID:9679465

  14. Prostate cancer: palliative care and pain relief.

    PubMed

    Kaya, E; Feuer, D

    2004-01-01

    Metastatic prostate cancer is incurable, and both the disease and other comorbidities as well as side effects from treatments can be very disabling for patients who are generally elderly. Past reviews on palliative care in prostate cancer have tended to concentrate on methods of active intervention with palliative intent rather than the principles of palliative care in a broader context. This paper is intended to introduce the principles and practice of modern palliative care as applied to care of patients with prostate cancer. Current National Institute for Clinical Excellence guidelines for urological cancers recommends provision of palliative care for all patients with prostate cancer, according to need. Palliative care aims to improve the quality of life of patients and their families. It is a holistic and personal approach to patient care, consisting of patient centred multiprofessional teams. Symptoms such as pain, psychological, spiritual and social problems are given equal weighting and tackled simultaneously. When treating pain, hormonal manipulation, radiotherapy, chemotherapy and surgery should always be considered alongside analgesic therapy, with realistic aims in mind. Towards the end of life, palliative care for patients will generally increase in line with increasing symptoms and other problems. Achieving a peaceful and comfortable death for our patients should be a priority in hospitals. PMID:15356678

  15. Palliative care reimagined: a needed shift.

    PubMed

    Abel, Julian; Kellehear, Allan

    2016-03-01

    Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers-an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care. PMID:26832803

  16. A mixed-methods evaluation of complementary therapy services in palliative care: yoga and dance therapy.

    PubMed

    Selman, L E; Williams, J; Simms, V

    2012-01-01

    To inform service provision and future research, we evaluated two complementary therapy services: yoga classes and dance therapy [The Lebed Method (TLM)]. Both were run as 6-week group courses. Patients completed the Measure Yourself Concerns and Wellbeing questionnaire pre- and post-course. Mean change over time was calculated for patient-nominated concern and well-being scores. Qualitative data regarding factors affecting health other than the therapy and benefits of the service were analysed using content analysis. Eighteen patients participated (mean age 63.8 years; 16 female; 14 cancer diagnoses); 10 were doing yoga, five TLM, and three both yoga and TLM; 14 completed more than one assessed course. Patients' most prevalent concerns were: mobility/fitness (n= 20), breathing problems (n= 20), arm, shoulder and neck problems (n= 18), difficulty relaxing (n= 8), back/postural problems (n= 8), fear/anxiety (n= 5). Factors affecting patients' health other than the therapy were prevalent and predominantly negative (e.g. treatment side effects). Patients reported psycho-spiritual, physical and social benefits. Concern scores improved significantly (P < 0.001) for both therapies; improved well-being was clinically significant for yoga. Evaluations of group complementary therapy services are feasible, can be conducted effectively and have implications for future research. Yoga and TLM may be of benefit in this population. PMID:21880079

  17. 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

  18. International palliative care: Middle East experience as a model for global palliative care.

    PubMed

    Hajjar, Ramzi R; Charalambous, Haris A; Baider, Lea; Silbermann, Michael

    2015-05-01

    Care for elderly people with life-limiting illness cannot be delivered primarily by geriatricians or palliative care practitioners. The role of these clinicians is to help carers become adept in palliative care medicine. In a culture in which family ties run deep, the offer of palliative care from an outsider may be met with suspicion. The family bond in the Middle East is strong, but the emotional response to terminal illness may push families to request futile treatments, and physicians to comply. When palliative care is well developed and well understood, it provides a viable alternative to such extreme terminal measures. PMID:25920063

  19. Palliative care for the older adult.

    PubMed

    Kapo, Jennifer; Morrison, Laura J; Liao, Solomon

    2007-02-01

    The majority of deaths in the United States occur in the geriatric population. These older adults often develop multiple chronic medical problems and endure complicated medical courses with a variety of disease trajectories. Palliative care physicians need to be skilled in addressing the needs of these frail elders with life-limiting illness as they approach the end of life. Although geriatrics and palliative medicine share much in common, including an emphasis on optimizing quality of life and function, geriatric palliative care is distinct in its focus on the geriatric syndromes and on the provision of care in a variety of long-term care settings. Expertise in the diagnosis and management of the geriatric syndromes and in the complexities of long-term care settings is essential to providing high-quality palliative care to the elderly patient. This paper is a practical review of common geriatric syndromes, including dementia, delirium, urinary incontinence, and falls, with an emphasis on how they may be encountered in the palliative care setting. It also highlights important issues regarding the provision of palliative care in different long-term care settings. PMID:17298269

  20. 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. PMID:26897897

  1. Middle East experience in palliative care.

    PubMed

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

    2013-02-01

    Palliative Care (PC) is still a relatively new concept in the Middle East (ME). It was first introduced in Saudi Arabia in 1992 and only recently in countries such as Qatar, Bahrain, and the UAE. Although the majority of Middle-Eastern countries, including Palestine, Iraq, Oman and Lebanon are in the capacity building phase, others such as Saudi and Jordan already have localized provision. In the absence of any of the ME countries approaching integration with the mainstream service providers, Saudi Arabia and Jordan are currently setting examples of achievement in the field. There are still countries with little or no known Palliative Care activity (Yemen and Syria). Political issues, scarcity of resources, and lack of education and awareness seem to be the common factors restricting the progress of this field in most countries. In order to improve the suboptimal PC services in the ME, emphasis should be directed toward providing formal education to professionals and raising awareness of the public. It is also necessary to put all differences aside and develop cross-border collaborations, whether through third party organizations such as the Middle East Cancer Consortium (MECC) or otherwise. This review compiles the available literature on the history and progress of the field of PC in most ME countries, while pointing out the major obstacles encountered by the active parties of each country. PMID:22495789

  2. 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 comprehensive harm reduction services can serve to improve access and equity in palliative and supportive care for drug-using populations. PMID:24629844

  3. 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

  4. Palliative Care: What You Should Know

    MedlinePlus

    ... part of the team. 7 ? The palliative care team works in partnership with your own doctor to provide an extra layer of support for you and your family. The team provides expert symptom management, extra time for communication ...

  5. 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. PMID:26813620

  6. Palliative care for patients with end-stage renal failure: reflections from Central Australia.

    PubMed

    Fried, Ofra

    2003-09-01

    This paper explores palliative care issues for Australian Aboriginal patients with end-stage renal failure. Renal disease is epidemic amongst Aboriginal Australians. The Central Australian Palliative Care Service, based in the remote town of Alice Springs, sees a high proportion of renal patients, with different demographic characteristics to those seen in urban palliative care services. A case history illustrates distinctive concerns for local service provision, including communication issues, cultural requirements for maximizing quality of life, and the need to provide care in remote locations. Palliation for end-stage renal failure (ESRF) patients should be based on standard principles, but modified in accordance with local practical requirements and community needs. PMID:14526885

  7. 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.…

  8. Palliative care in patients with heart failure.

    PubMed

    McIlvennan, Colleen K; Allen, Larry A

    2016-01-01

    Despite advances in cardiac therapy, heart failure (HF) remains a progressive, highly symptomatic, and deadly disease that places great demands on patients, caregivers, and healthcare systems. Palliative care is a multidisciplinary approach to care that focuses on communication, shared decision making, and advance care planning; provides relief from pain and other distressing symptoms; integrates psychological and spiritual aspects of care; and offers a support system to help families cope during illness and bereavement. Palliative care has applications across the stages of heart failure, including early in the course of illness, often in conjunction with other therapies that are intended to prolong life. However, the incorporation of palliative care into the management of heart failure has been suboptimal for several reasons: uncertainty in the disease trajectory, failure to reward communication between healthcare providers and patients, siloed care, lack of knowledge, overlay of comorbidity and frailty, life saving devices with complex trade-offs, and a limited evidence base. This review will summarize the current literature on the emerging role of palliative care in patients with heart failure and the challenges and opportunities for its integration into routine care. It will discuss current initiatives and future directions of the collaborative relationship between the palliative care and heart failure disciplines. PMID:27079896

  9. Past, present, and future of palliative care in Japan.

    PubMed

    Tsuneto, Satoru

    2013-01-01

    Palliative care in Japan has developed through a number of transition stages. The first of these was the recognition of costs for care received at a palliative care unit as eligible for reimbursement under the medical insurance system. The second stage was the recognition of costs for care received from a hospital-based palliative care team as eligible for reimbursement under the medical insurance system. The third stage was government policy relating to palliative care, including establishment of the Cancer Control Act formulation of the Basic Plan to Promote Cancer Control Programs and implementation of the Promotion Plan for the Platform of Human Resource Development for Cancer. A total of 350 000 cancer patients died during fiscal 2011, of which 9% made use of a palliative care unit. The use of palliative care is steadily growing with a trend away from palliative care units toward palliative care teams and care in the home. Whereas it was once seen as the limited treatment of terminal care, palliative care is increasingly becoming integrated into mainstream treatment. Basic palliative care education programs for physicians not specializing in palliative care and other medical practitioners are bringing about the spread of basic palliative care in Japan, thus putting in place broad foundations for the practice of palliative care. Improving the quality of palliative care and providing specialized palliative care are essential in Japan. Future challenges are (i) the construction of a community palliative care network, (ii) fostering specialists in palliative care and (iii) the provision of high-quality palliative care and end-of-life care to patients with life-threatening illnesses that are not limited to cancer. PMID:23166387

  10. Palliative Home Care: A Designer's Perspective.

    PubMed

    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

  11. 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

  12. Palliative care for people with dementia: a literature review.

    PubMed

    Lillyman, Sue; Bruce, Mary

    2016-02-01

    With growing numbers of people dying with, and from, dementia there is a need for professionals and health-care organisations to review the access to and provision of palliative care. This literature review has identified several key themes in relation to the person dying with dementia including: diagnosis of the dying phase, appropriate timing of referral to specialist palliative care services; ethical decisions in relation to medication and nutrition; the environment; undertreatment especially, for pain relief; over and burdensome treatment interventions; carer involvement; collaborative working and advance decision making. PMID:26926347

  13. 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. PMID:24863582

  14. 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

  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. PMID:26598947

  16. Prevalence of Hyponatremia in Palliative Care Patients

    PubMed Central

    Nair, Shoba; Mary, Thiophin Regina; Tarey, SD; Daniel, Sudha Pauline; Austine, Jose

    2016-01-01

    Introduction: Hyponatremia is an undertreated finding in clinical practice. It is the most common electrolyte abnormality. Hyponatremia can be asymptomatic or can cause symptoms ranging from nausea and lethargy to convulsions and coma. Palliative care patients have a multitude of symptoms and there are several contributing factors towards this. Hyponatremia could be one of the contributing factors. Looking at the prevalence of hyponatremia would highlight the magnitude of the problem and would prompt healthcare professionals to investigate and treat hyponatremia in palliative care patients, which in turn might reduce symptoms such as fatigue and nausea. This could improve the quality of life in palliative care patients. Aim: To assess the prevalence of hyponatremia among patients referred for palliative care in a tertiary care hospital. Methodology: This is a descriptive study, with retrospective analysis of consecutive patient charts for 5 years. The sodium levels at the time of referral for palliative care, was reviewed. Inferential statistics for the result was calculated using the Z-test. Results: Of the 2666 consecutive patient charts that were reviewed, sodium values were recorded in 796 charts. Among the recorded charts, 28.8 % of patients showed hyponatremia at the time of referral which was significant with a P value of 0.000 (<0.05). Of these, 61.1 % had malignancy as their diagnosis and the rest had nonmalignant diseases, ranging from trauma to chronic obstructive pulmonary disease. Conclusions: Prevalence of hyponatremia is significant in palliative care patients. A prospective study looking at the causes and clinical outcomes associated with hyponatremia in palliative care patients is needed. PMID:26962278

  17. [Palliative Care at Home by Anesthesiologists].

    PubMed

    Koitabashi, Toshiya

    2016-03-01

    Governmental policies recommend the palliative care at home for cancer patients. However, there are some barriers to discharge cancer patients from the hospital who want to receive end-of-life care at their homes. Anesthesiologists whose main job is to perform general anesthesia in the operating theater usually have little contact with general practitioners giving community palliative care. So it is important to communicate each other to make opportunities to discuss an organized system and care plan for these patients, and to improve information transfer. PMID:27097503

  18. [Palliative care for a homeless person].

    PubMed

    Slockers, Marcel T; Baar, Frans P M; den Breejen, Petra; Slockers, Christian J; Geijteman, Eric C T; Rietjens, Judith A C

    2015-01-01

    Homeless people have substantial health disadvantages as compared to the general population, and excessive losses in life expectancy. High proportions of psychiatric disorders, substance abuse and intellectual disability have been reported. This makes palliative care for this population extremely complex. A 55-year-old man, addicted to heroin and cocaine, was diagnosed with metastatic lung cancer. His terminal phase of life was complicated by many admissions to different care settings and problems with symptom management. Involvement of a palliative care consultation team and transfer to a homeless shelter, to which homeless people with life-threatening diseases could be admitted, gave both the patient and his family relief. This case illustrates that palliative care in homeless patients may be extremely complex due to the specific physical and psychosocial features involved. Such care should be offered proactively and on a multidisciplinary basis. PMID:26306486

  19. Prostate cancer: palliative care and pain relief.

    PubMed

    Thompson, J C; Wood, J; Feuer, D

    2007-01-01

    Introduction Metastatic prostate cancer is incurable and causes significant morbidity. The focus of treatment should be on improving quality of life through appropriate oncological treatment and palliative care. The National Institute for Clinical Excellence guidelines for urological cancer recommends palliative care for all patients with prostate cancer, according to need. This paper outlines the principles of modern palliative care in patients with metastatic prostate cancer within the UK. Discussion We highlight the main physical symptoms encountered in metastatic prostate cancer and their management. We also introduce the UK Department of Health's 'End-of-Life Care Programme'. This initiative intends to improve the lives and deaths of all patients with incurable disease and should be a priority for all health care professionals, within any setting. Conclusion Clearly, we have addressed the management of metastatic prostate cancer within the UK setting, though any of these government initiatives may provide a resource and framework in other countries. PMID:17628024

  20. Provider perspectives on palliative care needs at a major teaching hospital.

    PubMed

    Llamas, K J; Llamas, M; Pickhaver, A M; Piller, N B

    2001-11-01

    Jericho Metropolitan Hospital (JMH) is a major Australian teaching hospital which lacked a designated palliative care service at the time this study was conducted. A questionnaire addressing palliative care service needs, and educational and support needs of staff, was sent to 267 multi-disciplinary oncology staff at JMH. A response rate of 83% was achieved. Staff identified a number of palliative care needs that were being particularly poorly addressed by existing services. These included: spiritual support, cultural needs, grief and bereavement support, pleasant surroundings, adequate privacy and facilities for families. The majority of respondents identified the following issues as critical problems in palliative care provision: lack of a designated palliative care service, lack of palliative care education of staff, unmanageable caseloads and inadequate physical facilities for the provision of care. Only 24% of respondents reported having had any palliative care education, and 92% of respondents expressed a need for further education. The majority of respondents (79%) expressed a need for improved staff support. There was a significant association between perceived need for improved support and professional discipline (chi2 = 31.33, P < 0.002), with medical staff being significantly less likely than other staff groups to report a need for improved support. Overall, the health providers surveyed identified major deficiencies in the provision of palliative care to cancer patients at JMH and in the palliative care education and support for staff caring for terminally ill cancer patients. The findings support the need for a designated palliative care service at JMH to improve the standard of care of dying cancer patients, and the need for improved palliative care education and support for staff. PMID:12403503

  1. An interprofessional education programme for medical learners during a one-month palliative care rotation.

    PubMed

    Stilos, Kalli; Daines, Patricia; Moore, Jennifer

    2016-04-01

    Interprofessional education in health care and in palliative care has been the focus of increasing attention in recent years. For health professionals to provide and deliver high-quality palliative care, collaboration and teamwork is required. Palliative care is the ideal service to introduce interprofessional teamwork to medical learners early on in their training. During a 1-month palliative care rotation in Ontario, Canada, medical learners completed a questionnaire seeking their feedback on the interprofessional team model. This article will highlight the results of the questionnaire, how the team promotes a culture of interprofessional collaborative practice, and the supportive structures that foster collaboration among professionals. PMID:27119406

  2. Overcoming Recruitment Challenges in Palliative Care Clinical Trials

    PubMed Central

    LeBlanc, Thomas W.; Lodato, Jordan E.; Currow, David C.; Abernethy, Amy P.

    2013-01-01

    Purpose: Palliative care is increasingly viewed as a necessary component of cancer care, especially for patients with advanced disease. Rigorous clinical trials are thus needed to build the palliative care evidence base, but clinical research—especially participant recruitment—is difficult. Major barriers include (1) patient factors, (2) “gatekeeping,” and (3) ethical concerns. Here we discuss an approach to overcoming these barriers, using the Palliative Care Trial (PCT) as a case study. Patients and Methods: The PCT was a 2 × 2 × 2 factorial randomized controlled trial (RCT) of different service delivery models to improve pain control in the palliative setting. It used a recruitment protocol that fused evidence-based strategies with principles of “social marketing,” an approach involving the systematic application of marketing techniques. Main components included (1) an inclusive triage algorithm, (2) information booklets targeting particular stakeholders, (3) a specialized recruitment nurse, and (4) standardization of wording across all study communications. Results: From an eligible pool of 607 patients, the PCT enrolled 461 patients over 26 months. Twenty percent of patients referred to the palliative care service were enrolled (76% of those eligible after screening). Several common barriers were minimized; among those who declined participation, family disinterest was uncommon (5%), as was the perception of burden imposed (4%). Conclusion: Challenges to clinical trial recruitment in palliative care are significant but not insurmountable. A carefully crafted recruitment and retention protocol can be effective. Our experience with designing and deploying a social-marketing–based protocol shows the benefits of such an approach. PMID:24130254

  3. An exploration of palliative care provision in Scottish care homes.

    PubMed

    Reid, Lorna; Snowden, Austyn; Kydd, Angela

    This paper suggests that there is an imbalance between the ideal and the actual palliative care provision for some older people living and dying in care homes in Scotland. Successive studies demonstrate that care home residents are increasingly frail and disabled. Many experience challenging physical and psychosocial symptoms which could benefit from a palliative approach to alleviate suffering and promote comfort. However, palliative needs for people with non-malignant conditions, such as dementia, can be complex, and not easily identified or managed. A range of challenging factors currently impact palliative care provision for care home residents in Scotland including: the insufficiency of robust NHS healthcare support, the skill mix of the care home workforce, and the promotion of palliative tools as the primary means of improving the quality of palliative care in non-specialist settings. Issues highlighted in this paper give cause for concern on a number of levels, particularly as the demand for palliative care in care homes is likely to increase in the near future. Therefore, sustained collaborative effort from leaders in the health, social and care home sectors is recommended if practical solutions are to be found for this vulnerable population. PMID:22240515

  4. Interprofessional Education Using a Palliative Care Simulation.

    PubMed

    Saylor, Jennifer; Vernoony, Stephanie; Selekman, Janice; Cowperthwait, Amy

    2016-01-01

    This quasi-experimental pretest-posttest study measured self-efficacy, attitudes toward physician-nurse collaboration, and interprofessional competencies as outcomes of a palliative care simulation. Based on experience level, teams of participants, 1 consisting of nursing/medical students and the other of nursing/medical health care professionals, completed a palliative care simulation as part of their education. Self-efficacy and attitudes toward physician-nurse collaboration were measured before and after simulation. Interprofessional competency was measured during the simulation. The results revealed a significant improvement in the previously mentioned measures, and interprofessional competency scores varied by profession and evaluator. PMID:26492356

  5. Relocation stress syndrome: the case of palliative care patients.

    PubMed

    Porock, D; Martin, K; Oldham, L; Underwood, R

    1997-11-01

    Transfer of patients from palliative care services to nursing homes is necessary at present when a patient is relatively stable, but does not have adequate support systems at home. With the ageing of the population and the increasing incidence of cancer, the need for inpatient palliative care beds is growing with corresponding pressure for patients to be transferred to nursing homes. Transfer to a nursing home in the general population has been described extensively in the gerontology literature where a critical early phase of relocation has been identified by a high incidence of morbidity and mortality. The vulnerability of terminally ill patients means that they are at increased risk of suffering from stress associated with a transfer. The prognosis of a patient may be shorter than the time required for adjustment to the patient's new home. The issues surrounding transfer of palliative care patients to nursing homes and possible strategies designed to reduce distress associated with transfers are explored. PMID:9519166

  6. 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)

  7. Palliative Care for the Seriously Ill

    PubMed Central

    Kelley, Amy S.; Morrison, R. Sean

    2015-01-01

    Palliative care is the interdisciplinary specialty focused on improving quality of life for persons with serious illness and their families. Over the past decade,1 the field has undergone substantial growth and change, including an expanded evidence base, new care-delivery models, innovative payment mechanisms, and increasing public and professional awareness. PMID:26287850

  8. Providing palliative care in primary care: how satisfied are GPs and district nurses with current out-of-hours arrangements?

    PubMed

    Shipman, C; Addington-Hall, J; Barclay, S; Briggs, J; Cox, I; Daniels, L; Millar, D

    2000-06-01

    The complex needs of palliative care patients require an informed, expert, and swift response from out-of-hours general medical services, particularly if hospital admission is to be avoided. Few general practitioners (GPs) reported routinely handing over information on their palliative care patients, particularly to GP co-operatives. District nurses and inner-city GPs were least satisfied with aspects of out-of-hours care. Most responders wanted 24-hour availability of specialist palliative care. This indicates a need to develop and evaluate out-of-hours palliative care procedures and protocols, particularly for GP co-operatives, and to improve inter-agency collaboration. PMID:10962787

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

    MedlinePlus

    ... need palliative care, does that mean you’re dying? The purpose of palliative care is to address ... palliative care does not necessarily mean you’re dying. 1 Palliative care gives you a chance to ...

  10. 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

  11. 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. PMID:26700928

  12. Ethical and legal issues in palliative care.

    PubMed

    Bernat, J L

    2001-11-01

    This article reviews the ethical principles underlying palliative care, stressing the importance of respecting patient's rights to withdraw or withhold life-sustaining treatment, including artificial hydration and nutrition. There is no ethical or constitutional right to receive physician-assisted suicide or voluntary active euthanasia. This article discusses current ethical controversies in palliative care, including futility, medication dosage and double-effect, terminal sedation, legalization of physician-assisted suicide and euthanasia, and patient refusal of hydration and nutrition. Relevant legal issues are discussed in tandem with the ethical issues. PMID:11854109

  13. Role of codeine in palliative care.

    PubMed

    Prommer, Eric

    2011-01-01

    Codeine is designated as one of the essential medicines of palliative care for symptoms such as pain and diarrhea. Essential drugs for palliative care are drugs that are effective for the treatment of common symptoms in palliative medicine, easily available, and are affordable. Codeine is recommended for the management of mild to moderate pain and is available as a combination product or as a stand-alone opioid. It is a prodrug and exhibits an affinity to micro-opioid receptors 200 times lower than morphine. Codeine is metabolized in the liver to inactive metabolites, which account for 90 percent of the transformed product, and morphine, which accounts for 10 percent of the transformed product and provides the main analgesic effect. The production of morphine is dependent on cytochrome oxidase 2D6 enzyme activity, which may not be fully active in some populations. The purpose of this review is to examine the efficacy of codeine for common symptoms encountered in palliative medicine, which has led to its designation as an essential medicine for palliative care. PMID:22165039

  14. 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

  15. [Legal basics in palliative care].

    PubMed

    Putz, Wolfgang

    2016-03-01

    The German legal framework concerning end of life decisions is based on two pillars: the medical standards and the patient's autonomy. Every medical treatment, including life-saving and palliative measures, requires medical indication and, crucially, the patient's consent. Without the patient's consent even medically indicated treatment is prohibited.In other cases, complying with the patient's wishes, doctors have to treat symptoms the best they can. This includes palliative sedation accepting that the indicated medication may shorten life.It is prohibited to actively kill a patient to shorten his suffering. Assisting a suicide is only permitted if the suicide decision is made freely and on the patient's own responsibility. Businesslike suicide assistance is prohibited. PMID:26983108

  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. [Palliative care: an approach based on the professional health categories].

    PubMed

    Hermes, Hélida Ribeiro; Lamarca, Isabel Cristina Arruda

    2013-09-01

    Palliative care has emerged as a humanitarian philosophy of caring for terminally ill patients, alleviating their pain and suffering. This care involves the action of an interdisciplinary team, in which all the professional recognize the limits of their performance will help the terminally ill patient to die with dignity. This article deals with the issue of death and dying, both from the traditional and the contemporary standpoint, and how palliative care have been treated in the job categories of medicine, social work, psychology and nursing. The methodology of this study consists of a literature review of articles in the SciELO database, electronic journals and technical books related to the topic. Analysis of the articles revealed a shortage of subjects that deal with the theme of death in professional curricula, as well as few palliative care services in Brazilian society and barriers faced by this new approach to the terminal patient. This research aims to broaden the discussion of palliative care in public health, and provide information for future studies that will address the theme. PMID:23989564

  18. Using Skype to support palliative care surveillance.

    PubMed

    Jones, Jacqueline

    2014-02-01

    The aim of this article is to demonstrate how a novel yet important tool can facilitate family involvement in person-centred care, despite geographical distance. The author presents a case study as an in-depth example of the use of Skype in the context of palliative care at home. Skype enhanced family surveillance and symptom management, augmented shared decision making, provided a space for virtual bedside vigil, and ultimately provided the rapport necessary for optimal end of life care. PMID:24471549

  19. 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

  20. [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

  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. [Massage in a palliative care network].

    PubMed

    Blanchon, Carine

    2014-01-01

    In her day-to-day work, the nurse develops a professional posture to reach out to patients. In collaboration with the nursing assistant, she implements psycho-corporal practices such as relational touch and massage, which improve wellbeing, particularly in the framework of palliative care at home. PMID:25158451

  3. Palliative Care in Advanced Cancer Patients: How and When?

    PubMed Central

    Yennurajalingam, Sriram

    2012-01-01

    Cancer patients develop severe physical and psychological symptoms as a result of their disease and treatment. Their families commonly suffer great emotional distress as a result of caregiving. Early palliative care access can improve symptom control and quality of life and reduce the cost of care. Preliminary results show that early palliative care access can also extend survival. Unfortunately, only a minority of cancer centers in the U.S. have the two most important resources for palliative care delivery: outpatient palliative care centers and inpatient palliative care units. In this article, we use a case presentation to discuss the impact of early palliative care access in light of the currently available evidence, and we recommend ways to improve early access to palliative care through education and research. PMID:22252934

  4. Chronic cancer: bringing palliative care into the conversation.

    PubMed

    Gerbino, Susan

    2014-01-01

    Palliative care is a treatment model that aims to relieve patient suffering and improve quality of life, and is essential for those living with chronic cancer. However, most palliative care referrals are made as a last resort when all other treatment options have failed. This article argues that social workers have an important role in early palliative care discussions because of their unique skill set. Techniques for early introduction of palliative care are addressed, as are ways for empowering patient advocacy. A case narrative of a young woman with chronic cancer is included as an example of the need for ongoing palliative care conversations. PMID:24405240

  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. PMID:26117997

  6. Nutrition issues and tools for palliative care.

    PubMed

    Cline, David

    2006-01-01

    Adequate nutritional intake is often difficult, if not impossible, for the person with a terminal illness. Patients, families, and caregivers struggle to continue providing food and fluids in the face of declining ability and interest. Nutrition issues often need to be addressed by home care clinicians, who should be armed with the basic concepts and tools for educating and counseling those involved in the area of palliative care nutrition. PMID:16394826

  7. The oncology palliative care clinic at the Princess Margaret Cancer Centre: an early intervention model for patients with advanced cancer.

    PubMed

    Hannon, Breffni; Swami, Nadia; Pope, Ashley; Rodin, Gary; Dougherty, Elizabeth; Mak, Ernie; Banerjee, Subrata; Bryson, John; Ridley, Julia; Zimmermann, Camilla

    2015-04-01

    Several recently published randomized controlled trials have demonstrated the benefits of early palliative care involvement for patients with advanced cancer. In the oncology outpatient setting, palliative care clinics are an ideal site for the provision of early, collaborative support, which can be maintained throughout the cancer trajectory. Despite this, access to ambulatory palliative care clinics is limited, even at tertiary cancer centres. Existing programs for outpatient palliative care are variable in scope and are not well described in the literature. We describe the development and expansion of an outpatient palliative care clinic at the Princess Margaret Cancer Centre, Toronto, Canada, demonstrating how the clinic functions at a local and regional level. This clinic served as the intervention for a recent large cluster-randomized trial of early palliative care. The model for this service can be adapted by other palliative care programs that aim to provide early, integrated oncology care. PMID:25281230

  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. Developing the Cambridge palliative audit schedule (CAMPAS): a palliative care audit for primary health care teams.

    PubMed Central

    Rogers, M S; Barclay, S I; Todd, C J

    1998-01-01

    BACKGROUND: Problems with the provision of palliative care have been reported. Audit is one means of improving care. Earlier audits of primary care palliative care have been initiated by general practitioners (GPs) and are predominantly retrospective record reviews. Widely applicable methods for the audit of primary care palliative care do not exist. AIM: To develop relevant palliative care standards and to devise an audit schedule (the Cambridge palliative audit schedule, CAMPAS) suitable for monitoring palliative care in diverse primary care settings. METHOD: Primary health care team (PHCT) members collaborated at all stages. Reasonable outcomes and acceptable interventions for PHCTs were identified and standards developed. Each standard was constructed to ensure uniform interpretation, and CAMPAS was structured to collect data necessary for determining whether the standards were met. RESULTS: Over 50% of PHCTs (n = 20) in the health district were recruited and trained to use CAMPAS. A total of 876 contacts with 29 patients was recorded by PHCTs using CAMPAS. Considerable inter- and intra-PHCT variation was found in the achievement of the standards. CONCLUSIONS: The favourable participation rate suggests commitment to audit and improvement in patient care. Overall, the standards were reported to be suitable. Although 100% achievement of some standards may be unrealistic, the level of attainment for many suggests that it is possible. CAMPAS has been reported to be a useful structure for recording assessments and monitoring care, as well as a usable audit schedule. As an audit tool, it identified areas in need of improvement and facilitated feed-back to participants. Future audit is required to determine whether improvements in care have been effected. PMID:9692279

  10. 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 rapid methodology and focus on model elements relevant to Australia’s health system. PMID:24670065

  11. Evaluating educational initiatives to improve palliative care for people with dementia: a narrative review.

    PubMed

    Raymond, Mareeni; Warner, Alex; Davies, Nathan; Baishnab, Elora; Manthorpe, Jill; Iliffe, Steve

    2014-05-01

    Dementia accounts for one in three deaths among people aged 65 and over, but end-of-life care for people with dementia is often sub-optimal. Palliative care for people with dementia poses particular challenges to those providing services, and current policy initiatives recommend education and training in palliative care for those working with patients with dementia. However, there are few evaluations of the effectiveness of dementia education and training. This paper presents a narrative review undertaken in 2011-2012 of evaluations of palliative care education for those working with people with dementia at the end of life. A total of eight papers were identified that described and evaluated such palliative care education; none reported benefits for people with dementia. There is a clear need to develop and evaluate educational interventions designed to improve palliative and end-of-life care for people with dementia. Some suggestions for educationally sound approaches are discussed. PMID:24339062

  12. End of life and palliative care in intensive care unit.

    PubMed

    Moritz, Rachel Duarte; Lago, Patricia Miranda do; Souza, Raquel Pusch de; Silva, Nilton Brando da; Meneses, Francisco Albano de; Othero, Jairo Constante Bitencourt; Machado, Fernando Osni; Piva, Jefferson Pedro; Dias, Mariza D Agostino; Verdeal, Juan Carlos Rosso; Rocha, Eduardo; Viana, Renata Andrea Pietro Pereira; Magalhes, Ana Maria Pueyo Blasco de; Azeredo, Nara

    2008-12-01

    The objective of this review was to evaluate current knowledge regarding terminal illness and palliative care in the intensive care unit, to identify the major challenges involved and propose a research agenda on these issues The Brazilian Critical Care Association organized a specific forum on terminally ill patients, to which were invited experienced and skilled professionals on critical care. These professionals were divided in three groups: communication in the intensive care unit, the decision making process when faced with a terminally ill patient and palliative actions and care in the intensive care unit. Data and bibliographic references were stored in a restricted website. During a twelve hour meeting and following a modified Delphi methodology, the groups prepared the final document. Consensual definition regarding terminality was reached. Good communication was considered the cornerstone to define the best treatment for a terminally ill patient. Accordingly some communication barriers were described that should be avoided as well as some approaches that should be pursued. Criteria for palliative care and palliative action in the intensive care unit were defined. Acceptance of death as a natural event as well as respect for the patient's autonomy and the nonmaleficence principles were stressed. A recommendation was made to withdraw the futile treatment that prolongs the dying process and to elected analgesia and measures that alleviate suffering in terminally ill patients. To deliver palliative care to terminally ill patients and their relatives some principles and guides should be followed, respecting individual necessities and beliefs. The intensive care unit staff involved with the treatment of terminally ill patients is subject to stress and tension. Availability of a continuous education program on palliative care is desirable. PMID:25307249

  13. Using palliative care in progressive neuromuscular disease to maximize quality of life.

    PubMed

    Carter, Gregory T; Joyce, Nanette C; Abresch, Allison L; Smith, Amanda E; VandeKeift, Gregg K

    2012-11-01

    This article discusses the role of palliative care in the treatment pathway of patients with progressive neuromuscular disease (NDM), including amyotrophic lateral sclerosis and Duchenne muscular dystrophy (DMD). People with severe NMDs like DMD are now living much longer, well in to adulthood. This makes them suitable for the medical model of palliative care. Yet palliative medicine is a new area, especially for "adults" with DMD. Strategies for identifying the most effective modalities to alleviate suffering in patients with an NMD receiving palliative services and creating best practice standards in pain and symptom management for this patient population are discussed. PMID:23137745

  14. Factors influencing palliative care. Qualitative study of family physicians' practices.

    PubMed Central

    Brown, J. B.; Sangster, M.; Swift, J.

    1998-01-01

    OBJECTIVE: To examine factors that influence family physicians' decisions to practise palliative care. DESIGN: Qualitative method of in-depth interviews. SETTING: Southwestern Ontario. PARTICIPANTS: Family physicians who practise palliative care on a full-time basis, who practise on a part-time basis, or who have retired from active involvement in palliative care. METHOD: Eleven in-depth interviews were conducted to explore factors that influence family physicians' decisions to practise palliative care and factors that sustain their interest in palliative care. All interviews were audiotaped and transcribed verbatim. The analysis strategy used a phenomenological approach and occurred concurrently rather than sequentially. All interview transcriptions were read independently by the researchers, who then compared and combined their analyses. Final analysis involved examining all interviews collectively, thus permitting relationships between and among central themes to emerge. MAIN OUTCOME FINDINGS: The overriding theme was a common philosophy of palliative care focusing on acceptance of death, whole person care, compassion, communication, and teamwork. Participants' philosophies were shaped by their education and by professional and personal experiences. In addition, participants articulated personal and systemic factors currently affecting their practice of palliative care. CONCLUSIONS: Participants observed that primary care physicians should be responsible for their patients' palliative care within the context of interdisciplinary teams. For medical students to be knowledgeable and sensitive to the needs of dying patients, palliative care should be given higher priority in the curriculum. Finally, participants argued compellingly for transferring the philosophy of palliative care to the overall practice of medicine. PMID:9612588

  15. 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

  16. Palliative care on Manitoulin Island. Views of family caregivers in remote communities.

    PubMed Central

    McRae, S.; Caty, S.; Nelder, M.; Picard, L.

    2000-01-01

    OBJECTIVE: To describe family caregivers' experiences with palliative care services in rural communities. DESIGN: Qualitative study. SETTING: Manitoulin Island, Ont. PARTICIPANTS: Thirteen family caregivers of 12 deceased patients who had received palliative care services. METHOD: Twenty-five family caregivers were recruited by mail and local newspaper. Eight were excluded because they lived off the Island or were too recently bereaved; one declined an interview; and three were excluded by researchers. Initial contact was by telephone; those retained (13 people) were interviewed at home. Interviews were conducted by the same researcher using a semistructured interview guide. All interviews were audiotaped and transcribed, and content was analyzed. MAIN FINDINGS: Three interwoven themes were identified: access to services, quality of services, and support and caring. Hospital and community-based services were accessed with ease at the local level; difficulties were noted when accessing services in tertiary care centres. Participants were generally grateful for and pleased with services received. Two areas of concern raised by participants were communication and pain and symptom control. Participants suggested to the Ministry of Health ways to improve rural palliative care services. More public funding for in-home palliative care services was identified as a priority. CONCLUSION: Participants thought good services and supportive care at the local level made up for difficulties in accessing and using palliative services in tertiary care centres. Community spirit and culture were seen as making situations more bearable. PMID:10907569

  17. Gabapentin for intractable hiccups in palliative care.

    PubMed

    Tegeler, Monica L; Baumrucker, Steven J

    2008-01-01

    Intractable hiccups are not common in the general population or in the palliative care population but can adversely impact quality of life and cause other complications such as weight loss and sleep disturbance. Many treatments have been proposed for intractable hiccups, but there is little consensus regarding treatment in the medical literature. This is partly because hiccups are relatively uncommon and many of the proposed treatments are unproven or have long-term side effects. Pharmacologic treatments rather than home remedies or surgical treatments are more appropriate for the palliative care patient. Gabapentin is a promising medication for the treatment of intractable hiccups for its safety, lack of serious side effects, and rapid onset of action. Further research is indicated to determine whether gabapentin is consistently effective. PMID:18292481

  18. [Palliative (symptomatic) care of (imminently) dying patients].

    PubMed

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

    2013-01-01

    The updated Current Care Guideline focuses on medical symptom treatment when curative treatment is no longer possible. Palliative care should be available to all dying patients at all health care levels. Pain should be treated prophylactically. Opioids are effective in cancer pain and should be chosen for moderate or severe pain in line with the WHO pain ladder. Treatment options for symptoms which call for acute interventions, such as intracranial hypertension, and options for dyspnoea, delirium, gastro-intestinal symptoms, ascites, dehydration and end-of-life treatment of elderly and demented patients are described. PMID:23484354

  19. 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. PMID:23995218

  20. Palliative care for children: preparing undergraduate nursing students.

    PubMed

    Schreiner, Lynnette S; Pimple, Cathy; Wolf Bordonaro, Gaelynn P

    2009-01-01

    Children with life-threatening illnesses rarely benefit from palliative services. Because nurses spend more time with dying children than any other healthcare professional does, it is essential that they are prepared to address the complicated physical, psychological, legal, ethical, and spiritual issues associated with terminal illness and death. The authors discuss a course that provides students with the knowledge, skills, and attitude needed to provide comprehensive care for pediatric patients and their families. PMID:19574853

  1. 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’s palliative care. PMID:24761156

  2. The Changing Role of Palliative Care in the ICU

    PubMed Central

    Aslakson, Rebecca A.; Curtis, J. Randall; Nelson, Judith E.

    2015-01-01

    Objectives Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. Data Sources We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. Study Selection Selected studies included all English-language articles concerning adult patients using the search terms "intensive care" or "critical care" with "palliative care," "supportive care," "end-of-life care," or "ethics." Data Extraction After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. Data Synthesis Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and families face challenges after discharge from intensive care. Conclusions Palliative care is increasingly accepted as an essential component of comprehensive care for critically ill patients, regardless of diagnosis or prognosis. A variety of strategies to improve ICU palliative care appear to be effective, and resources including technical assistance and tools are available to support improvement efforts. As the longer-term impact of intensive care on those surviving acute critical illness is increasingly documented, palliative care can help prepare and support patients and families for challenges after ICU discharge. Further research is needed to inform efforts to integrate palliative care with intensive care more effectively and efficiently in and after the ICU and to document improvement using valid and responsive outcome measures. PMID:25167087

  3. Palliative Care and Hospice in Advanced Heart Failure

    PubMed Central

    LeMond, Lisa; Allen, Larry A.

    2013-01-01

    Advanced heart failure (HF) is a disease process that carries a high burden of symptoms, suffering, and death. Palliative care can complement traditional care to improve symptom amelioration, patient-caregiver communication, emotional support, and medical decision making. Despite a growing body of evidence supporting the integration of palliative care into the overall care of patients with HF and some recent evidence of increased use, palliative therapies remain underused in the treatment of advanced HF. Review of the literature reveals that although barriers to integrating palliative care are not fully understood, difficult prognostication combined with caregiver inexperience with end-of-life issues specific to advanced HF is likely to contribute. In this review, we have outlined the general need for palliative care in advanced HF, detailed how palliative measures can be integrated into the care of those having this disease, and explored end-of-life issues specific to these patients. PMID:21875515

  4. 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 patients 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 patients goals of care, and assisting in transition to a noncurative approach and placement where this may be accomplished. PMID:24694318

  5. 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

  6. Paediatric palliative care: intravenous methylnaltrexone relieves constipation.

    PubMed

    Yeomanson, Daniel; Chohan, Osman; Mayer, Anton

    2013-03-01

    Methylnaltrexone, a peripheral opioid μ-receptor antagonist is licensed for subcutaneous administration for the treatment of severe opioid-induced constipation in adults. We describe the use of intravenous methylnaltrexone in a 3-year-old boy receiving a subcutaneous diamorphine infusion for palliation from widely metastatic alveolar rhabdomyosarcoma. The patient, who had not opened his bowels for 3 weeks despite use of regular conventional laxatives, was given a 150 mcg/kg dose via indwelling central venous catheter. Constipation was relieved within minutes of the injection. There were no side effects noted during or following injection, and no clinically apparent reduction in analgesia. Intravenous methylnaltrexone may provide a valuable additional treatment option in paediatric palliative care, especially for those with an oncological diagnosis, the majority of whom will have indwelling central venous access devices. PMID:24644335

  7. 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. PMID:26252232

  8. Distant Metastases and Palliative Care.

    PubMed

    Glazer, Tiffany A; Shuman, Andrew G

    2016-01-01

    Salivary gland neoplasms are rare and diverse tumors with variable disease courses, making it difficult to concisely summarize the management of distant metastases (DM). Nonetheless, there are trends of DM in salivary gland cancer that can be contextualized and reviewed. In general, the primary tumor characteristics that predict DM include the primary tumor site, tumor stage and grade, perineural spread, cervical nodal status, and genomic signatures. The most common site of DM is the lung, followed by the bone, liver, and brain. Depending on the clinical presentation, DM can be treated with watchful waiting, local therapies (surgery and/or radiation), or systemic therapy (cytotoxic or targeted chemotherapy). In general, DM confer a poor prognosis, and any cancer-directed treatment options should be carefully considered in the context of specific goals of care, symptom burden, and patient preference. PMID:27092552

  9. 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

  10. [Palliative care for the patients and their families].

    PubMed

    Ando, Shoko

    2003-12-01

    This article discusses palliative care for the patients and their families and the role of nurses for a smooth change from inpatient services to home care. Home is where a patient feels most comfortable. To provide the best possible care it is important to respect the decision of the patient and his family maximally and QOL takes top priority. Through the participation of home care doctors, home health nurses, pharmacists, etc., a 24-hour system can be established to improve home care. Simultaneously, the up of a patient self-care agency regards it as an importance. However, it is very difficulty for the patients and their families demonstrate the identity in the complicated medical situation, and thus providing support to them is a function of the nurses. It has been required that nurses in hospitals and home health nurses function to raise patients' self-care. PMID:14708293

  11. 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. PMID:10522743

  12. Anger in palliative care: a clinical approach.

    PubMed

    Philip, J; Gold, M; Schwarz, M; Komesaroff, P

    2007-01-01

    Anger in patients and families is a common problem in the care of persons with advanced disease. Whereas it is widely accepted that anger may be a justifiable reaction to significant illness and loss, it frequently creates difficulties for the doctors involved in care. In particular, there is often a personal impact on the doctor at whom anger is directed. This paper examines results of qualitative research with palliative care workers in the context of the broader published literature and the authors' clinical experiences. The ability to interact effectively with angry patients is a skill that is often learned with experience and is extremely useful in both transforming the patients' reaction into a more creative emotion and in developing a therapeutic relationship. Despite conscientious efforts, however, a few patients continue to be angry. A practical approach to anger, useful for the clinician directly involved in care, is outlined along with some strategies to adopt in the face of persistent anger. PMID:17199844

  13. Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients

    PubMed Central

    Remedios, Cheryl; Zordan, Rachel; Thomas, Kristina; Clifton, Di; Crewdson, Michael; Hall, Christopher; Trauer, Tom; Bolleter, Amanda; Clarke, David M.; Bauld, Catherine

    2012-01-01

    Abstract Background Support for family caregivers, including bereavement follow-up, is a core function of palliative care. Many caregivers acknowledge positive aspects associated with the role; however a considerable proportion will experience poor psychological, social, financial, spiritual, and physical well-being and some will suffer from complicated grief. Many family caregivers have unmet needs and would like more information, preparation, and support to assist them in the caregiving role. There is a shortage of evidence-based strategies to guide health professionals in providing optimal support while the caregiver is providing care and after the patient's death. Purpose To develop clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. Methods (1) Literature review; (2) focus groups and structured interviews with key stakeholders within Australia; (3) national and international expert opinion to further develop and refine the guidelines using a modified Delphi process; and (4) endorsement of the guidelines from key palliative care, caregiver, and bereavement organizations (national and international). Results The guidelines were developed for multidisciplinary health care professionals and clinical services commonly involved in caring for adult patients receiving palliative care in a variety of care sites throughout Australia. These consensus-based guidelines have been endorsed key Australian and international organizations. Conclusions The guidelines may prove valuable for the international palliative care community and for generalist health care providers who occasionally care for palliative care patients. Research is recommended to explore the uptake, implementation, and effectiveness of the guidelines. PMID:22385026

  14. Evolution of palliative care in the French Cancer Centers-Unicancer.

    PubMed

    Fogliarini, Anne; Chvetzoff, Gisèle; Guesdon, Gérard; Krakowski, Ivan

    2015-01-01

    The French Cancer Centers (FCC) have a threefold mission, care research and education. Their specificity is multidisciplinary and comprehensive patient support at all stages of cancer. Innovation and research are at the heart of FCC action, but the care of patients in the palliative phase is a major and long-time concern. In each center there is an autonomous or integrated structure of palliative care in a service or Interdisciplinary Department of Support Care for the Patient in Oncology. These include, besides the hospice activity, chronic pain, psychooncology, social support, nutrition, functional rehabilitation, etc. Furthermore, the FCC have, in accordance with a secondary regulatory text to National Plans for palliative care, identified beds of palliative care (IBPC) in oncology day hospitals and in palliative care. In 2006 a Unicancer FCC group was established. One of the group's goals is to promote "early palliative care" together with other FCC teams. A common research dynamic has been implemented, ensuring the development of organizations and palliative culture. PMID:26867345

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

    MedlinePlus

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

  16. Palliative medicine teaching program at the University of Cape Town: integrating palliative care principles into practice.

    PubMed

    Gwyther, Liz; Rawlinson, Fiona

    2007-05-01

    The article describes the development of the postgraduate palliative medicine programs at the University of Cape Town (UCT) through collaboration with the Palliative Medicine Division from the University of Wales College of Medicine in Cardiff, United Kingdom. The course is presented as a distance-learning program supported by web-based learning with three face-to-face teaching sessions during the course. UCT recognized the urgent need to assist African doctors in developing the medical skills required to care for an ever-increasing population of patients and their families who are faced with terminal illness and the physical, emotional, psychosocial, and spiritual distress associated with end-of-life issues. Since 2001, 139 postgraduate students have registered for the course, 10% of whom are from African countries other than South Africa. Using the experience from UCT in distance-learning programs, the Hospice Palliative Care Association developed an interdisciplinary course, "Introduction to Palliative Care." This course recognizes that, although improvement in patient care and palliative care will come as undergraduate training in palliative care is established, it is essential that previously qualified health care professionals are able to enhance their palliative care knowledge, skills, and attitudes. Trainers provide support to participants over a six-month period and assist in the transference of knowledge and skills into the workplace. PMID:17482047

  17. 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

  18. 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 populous country like India, where the service is disproportionate to the demands. PMID:26962274

  19. Quality of Life in Cancer Patients Receiving Palliative Care

    PubMed Central

    Singh, Divya Pal

    2010-01-01

    Background: The main focus of palliative care services is to improve the patient’s quality of life (QOL), which is defined as the subjective evaluation of life as a whole or the patient’s appraisal and satisfaction with their current level of functioning compared with what they perceive to be possible or ideal. Aims: In this prospective study we attempt to validate the Hindi version of a questionnaire designed by the functional assessment of chronic illness therapy (FACIT) measurement system; to measure the subjective QOL of cancer patients receiving home-based palliative care, determine ease of use of the questionnaire and correlate the QOL of these patients with the objective assessment of their Karnofsky’s performance status and their numerical pain score. Settings and Design: One hundred cancer patients receiving free home-based palliative care in New Delhi, India. Materials and Methods: A multidisciplinary palliative home care team using the Functional Assessment of Cancer Therapy-General (FACT-G©) questionnaire in Hindi. Statistical Analysis Used: Microsoft Excel Correlation. Results: The FACT-G© questionnaire in Hindi is a useful tool in measuring QOL and can be used to monitor the patient’s progress and symptom control during the course of the disease. It is simple to use and does not take too much time to complete. The results are tabulated in English and can be used for comparison purposes globally; the scoring process is very simple. Conclusions: Increasing QOL and KPS showed a positive correlation whereas increasing pain and better QOL show negative correlation, as do better performance status and increasing pain score. PMID:20859470

  20. 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 ...

  1. An exploration of dignity in palliative care.

    PubMed

    Enes, Sylvia Patricia Duarte

    2003-04-01

    This paper presents a qualitative study exploring the meaning of 'dignity' to patients, relatives and professionals. It examines the impact of advanced illness and treatment and the issues pertinent to caring for dignity. Depth interviews were conducted with eight patients, six relatives and seven members of the multiprofessional team. A phenomenological approach to data analysis was adopted. Dignity was found to be a complex phenomenon. It is composed of the dimensions 'being human', 'having control', 'relationship and belonging' and 'maintaining the individual self'. These dimensions seemed to be held in equilibrium by each individual. The importance of each may alter in response to threats to dignity such as advancing illness and how one is treated within it, in an attempt to cope and adapt. Caring for dignity is challenging because it involves balancing the multiple needs of both users and providers of palliative care and the different perceptions and dimensions of dignity itself. PMID:12725480

  2. Leveraging External Resources To Grow and Sustain Your Palliative Care Program: A Call to Action

    PubMed Central

    Kerr, Kathleen M.; Kutner, Jean S.; Ferris, Frank D.; Rathfon, Megan A.; Rabow, Michael W.

    2012-01-01

    Abstract Hospital-based palliative care is becoming increasingly prevalent. There is growing evidence that it is having a positive impact on patients and their loved ones. In 2008, national data indicated that 58.5% of hospitals with 50 or more beds had a palliative care program. Data from a 2008 survey of California acute care hospitals showed that although 33% of sites had inpatient consultation services, one in five had been operational for only one year. As nascent palliative care programs grow, new issues arise and needs and plans change. Just as palliative care programs benefit from marketing and education plans, they also benefit from a plan to leverage external resources. Largely a missed opportunity, external resources such as organizations, networks, and experts can help palliative care service (PCS) leaders and team members gain information on everything from best practices to funding opportunities, while serving as sources for personal and professional support. The growing number of active PCSs and the increasing availability of support and expertise ensure that new programs no longer have to face challenges alone. Further, the steady increase in the number of new programs has created opportunities for those who are more experienced to serve as mentors for peers who are navigating the challenges of growing and sustaining a clinical service. The authors encourage both mentors and mentees to seek support from or provide support to others in the field. Leveraging the collective expertise and experiences in our field can ensure that palliative care continues to thrive and grow. PMID:22165898

  3. The current status of palliative care in Turkey: a nurse's perspective.

    PubMed

    Elcigil, Ayfer

    2011-04-01

    There has been a growing awareness for the need to develop a palliative care service in Turkey. But a significant proportion of the Turkey population still does not have access to palliative care. The majority of cancer patients are treated in university hospitals that have support units with pain specialists and medical oncologists. Some significant barriers to the development of palliative care nursing were identified: 1) Lack of palliative care education and training programs 2) Lack of certification for Palliative Care Nursing 3) There is very limited research about palliative care nursing 4) lack of public awareness and 4) shortage of nursing staff 5) the limited availability of/knowledge about opioid analgesics. Nurses have a unique and primary responsibility for advocating for the right of patients to maintain their quality of life for as long as possible and to experience a dignified and peaceful death. Continued efforts are needed to overcome these barriers to successful implementation of palliative and end-of-life care for patients with cancer. PMID:21448043

  4. Infomarkers for Transition to Goals Consistent with Palliative Care in Dying Patients

    PubMed Central

    Yao, Yingwei; Stifter, Janet; Ezenwa, Miriam O.; Lodhi, Muhammad; Khokhar, Ashfaq; Ansari, Rashid; Keenan, Gail M.; Wilkie, Diana J.

    2015-01-01

    Objective Electronic health records (EHRs) may contain infomarkers that identify patients near the end of life for whom it would be appropriate to shift care goals to palliative care. Discovery and use of such infomarkers could be used to conduct effectiveness research that ultimately could help to reduce the monumental costs for dying care. Our aim was to identify changes in the plans of care that represented infomarkers, which signaled the transition of care goals from non-palliative care goals to those consistent with palliative care. Methods Using an existing electronic health record database generated during a two-year, longitudinal study of 9 diverse medical-surgical units from 4 Midwest hospitals and a known group approach, we evaluated the patient care episodes for 901 patients who died (mean age=74.5±14.6 years). We used ANOVA and Tukey’s post-hoc tests to compare patient groups. Results We identified 11 diagnoses, including Death Anxiety and Anticipatory Grieving, whose addition to the care plan, some of which also occurred with removal of non-palliative care diagnoses, represent infomarkers of transition to palliative care goals. There were four categories of patients, those who had: no infomarkers on plans (n=507); infomarkers added on the admission plan (n=194); infomarkers added on a post admission plan (minor transitions, n=109), and infomarkers added and non-palliative care diagnoses removed on a post admission plan (major transition, n=91). Age, length of stay, and pain outcomes differed significantly for these four categories of patients. Significance of Results EHRs contain pertinent infomarkers that if confirmed in future studies could be used for timely referral to palliative care for improved focus on comfort outcomes and to identify palliative care subjects from data repositories for to conduct big data research, comparative effectiveness studies, and health services research. PMID:25711431

  5. Research priorities in geriatric palliative care: policy initiatives.

    PubMed

    Unroe, Kathleen T; Meier, Diane E

    2013-12-01

    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

  6. 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…

  7. Integrating palliative care for patients with advanced chronic kidney disease: recent advances, remaining challenges.

    PubMed

    Davison, Sara N

    2011-01-01

    Patients with ESRD have extensive and unique end-of-life care considerations and needs. Despite substantial advancements in renal palliative care over the past decade, much research is still required. Identifying CKD patients whose illness trajectory has shifted and would likely benefit from a palliative approach to care should be a priority of all nephrology programs. Further research on symptom management, the effectiveness of ACP, the life expectancy of conservatively managed and incident dialysis patients, anticipated changes in functional status and HRQL with the initiation of dialysis (especially among the frail elderly), and the best way to deliver renal palliative care is required to maximize the integration and effectiveness of renal palliative care services. PMID:21510132

  8. Palliative care and pain treatment in the global health agenda.

    PubMed

    De Lima, Liliana

    2015-04-01

    The Global Atlas of Palliative Care at the End of Life, published by the Worldwide Palliative Care Alliance (WPCA) jointly with the World Health Organization (WHO) estimated that every year >20 million patients need palliative care (PC) at the end of life. Six percent of these are children. According to the Atlas, in 2011, approximately 3 million patients received PC and only 1 in 10 people in need is currently receiving it. Although most PC is provided in high-income countries (HIC), almost 80% of the global need is in low- and middle-income countries (LMIC). Only 20 countries have PC well integrated into their health-care systems. In regards to opioids, >5 billion people (83% of the world's population) live in countries with low to nonexistent access, 250 million (4%) have moderate access, and only 460 million (7%) have adequate access. In order for PC and pain treatment strategies to be effective, they must be incorporated by governments into all levels of their health care systems. In 1990, the WHO pioneered a public health strategy to integrate PC into existing health care systems which includes four components: (1) appropriate policies, (2) adequate availability of medications, (3) education of health care workers and the public, and (4) implementation of PC services at all levels throughout the society. This topical review describes the current status of the field, and presents several initiatives by United Nations (UN) organizations and the civil society to improve access to PC and to pain treatment for patients in need. PMID:25789428

  9. 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

  10. 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…

  11. Palliative Care Physicians' Religious / World View and Attitude Towards Euthanasia: A Quantitative Study Among Flemish Palliative Care Physicians

    PubMed Central

    Broeckaert, B; Gielen, J; Van Iersel, T; Van den Branden, S

    2009-01-01

    Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation, religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. Results: We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. Conclusions: In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia. PMID:20606855

  12. 'Oh God, not a palliative': out-of-hours general practitioners within the domain of palliative care.

    PubMed

    Taubert, Mark; Nelson, Annmarie

    2010-07-01

    To date, the experiences of out-of-hours general practitioners with regard to palliative care patients and their management are yet to be evaluated, since the new General Medical Services contract came into force. In 2007 the National Institute for Health Research highlighted the need to identify factors that improve and hinder the delivery of optimum palliative out-of-hours care. By interviewing general practitioners who work out-of-hours shifts, this project explored factors influencing confidence in dealing with symptom control and palliative care provision outside regular working hours. Face-to-face semi-structured interviews were conducted with nine out-of-hours general practitioners employed by Serco. Interviews were conducted by a specialist doctor in palliative care who had in the past worked as an out-of-hours general practitioner. Interviews were analysed using Interpretative Phenomenological Analysis. General practitioners expressed concerns relating to constraints within the system provided by the private company-owned out-of-hours provider. Data from interviews was thematically very rich and brought out many different subject areas, some similar to previous interviews, some different. Sub-themes related to the process-driven aspects of working in out-of-hours: * Motivation, * Time-pressure constraints and continuity, * The out-of-hours doctor within the domain of palliative care, * Isolation within system. General practitioners stated that their motivation was mainly financial. There was clear concern about the lack of continuity, and inadequacy of notes and follow-up, and there was a demonstrated need for more learning on the topic of palliative care. Pressure from the out-of-hours provider to see more patients was felt to be oppositional with the need to spend adequate time with this vulnerable patient group. General practitioners felt as unwanted strangers who were viewed with suspicion by patients and carers in palliative care situations. It was clear that most of the doctors interviewed felt a strong sense of isolation when working out-of-hours shifts, and some felt less inclined to contact specialist palliative care services. PMID:20501510

  13. 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

  14. Pediatric palliative care in the community.

    PubMed

    Kaye, Erica C; Rubenstein, Jared; Levine, Deena; Baker, Justin N; Dabbs, Devon; Friebert, Sarah E

    2015-01-01

    Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed. PMID:25955682

  15. [Palliative care for elderly, longstay psychiatric patients].

    PubMed

    Pootjes, Y G; Hermans, P J

    2011-04-01

    Elderly, psychiatric patients admitted to a long-stay ward become physically ill and die. Which care can be offered on the ward and which cases require transferring a patient to specialized psychiatric-medical wards or a hospice? We studied 40 cases of death by malignancy in a clinic for elderly, long-term admitted psychiatric patients. Transferring the patient to such a ward was never indicated. Our population appeared to have a lack of awareness of their illness and expressed very few physical complaints. The possibilities of curative treatment of the malignancy were limited; the emphasis of the treatment was on palliative care. Because of the intensive support given on the patients ward the patients were able to die in peace. Deep sedation was never required. PMID:21574505

  16. Palliative care professionals' perceptions of nutrition and hydration at the end of life.

    TOXLINE Toxicology Bibliographic Information

    van der Riet P; Good P; Higgins I; Sneesby L

    2008-03-01

    The provision of medically administered nutrition and hydration (MNH) for the terminally ill patient is a controversial issue and there has been much debate in the literature concerning this sensitive subject. This article reports on a qualitative research study that explores palliative care nurses' and doctors' perceptions and attitudes to patient nutrition and hydration at the end of life. Participants were from an urban and rural palliative care service. Three main discourses were identified: carers' distress at the non-provision of MNH; palliative care doctors' and nurses' position that terminal dehydration lessened the burden of suffering for dying patients; and polarisation between the acute care setting and the palliative care setting. Overlaying these three main discourses are contesting discourses involving cure vs comfort, and acute care vs palliative care. Importantly, the findings of this study reveal that palliative doctors and nurses believe that medically assisted nutrition and hydration at the end stage of life rarely benefits patients, and as long as adequate mouth care is given, patients do not suffer. However, family members do experience emotional distress in dealing with this situation. In caring for dying people, the nurse's and doctor's role is one of education and communication, involving a team approach to manage this difficult issue.

  17. What is the extent of potentially avoidable admissions amongst hospital inpatients with palliative care needs?

    PubMed Central

    2013-01-01

    Background There is clear evidence that the full range of services required to support people dying at home are far from being implemented, either in England or elsewhere. No studies to date have attempted to identify the proportion of hospital admissions that could have been avoided amongst patients with palliative care needs, given existing and current local services. This study aimed to examine the extent of potentially avoidable admissions amongst hospital patients with palliative care needs. Methods A cross sectional survey of palliative care needs was undertaken in two acute hospitals in England. Appropriateness of admission was assessed by two Palliative Medicine Consultants using the following data collected from case notes: reasons for admission; diagnosis and co-morbidities; age and living arrangements; time and route of admission; medical and nursing plan on admission; specialist palliative care involvement; and evidence of cognitive impairment. Results A total of 1359 inpatients were present in the two hospitals at the time of the census. Of the 654 consenting patients/consultees, complete case note data were collected for 580 patients; the analysis in this paper relates to these 580 patients. Amongst 208 patients meeting diagnostic and prognostic criteria for palliative care need in two acute settings in England, only 6.7% were identified as ‘potentially avoidable’ hospitalisations. These patients had a median age of 84. Half of the patients lived in residential or nursing homes and it was concluded that most could have received care in this setting in place of hospital. Conclusion Our findings challenge assumptions that, within the existing configuration of palliative and end of life health and social care services, patients with palliative care needs experience a high level of potentially avoidable hospitalisations. PMID:23419123

  18. 76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-06-16

    ... HUMAN SERVICES National Institutes of Health Proposed Collection; Comment Request; NINR End-of-Life and...-of-Life and Palliative Care Science Needs Assessment: Funding Source Questionnaire (Survey of Authors...-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source Questionnaire will...

  19. Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives

    PubMed Central

    2010-01-01

    Background Non-specialist palliative care, as it is delivered by general practitioners, is a basic component of a comprehensive palliative care infrastructure for adult patients with progressive and far advanced disease. Currently palliative care for children and adolescents is recognized as a distinct entity of care, requiring networks of service providers across different settings, including paediatricians working in general practice. In Germany, the medical home care for children and adolescents is to a large extent delivered by general paediatricians working in their own practice. However, these are rarely confronted with children suffering from life-limiting diseases. The aim of this study was therefore to examine potential barriers, incentives, and the professional self-image of general paediatricians with regard to paediatric palliative care. Methods Based on qualitative expert interviews, a questionnaire was designed and a survey among general paediatricians in their own practice (n = 293) was undertaken. The survey has been developed and performed in close cooperation with the regional professional association of paediatricians. Results The results showed a high disposition on part of the paediatricians to engage in palliative care, and the majority of respondents regarded palliative care as part of their profile. Main barriers for the implementation were time restrictions (40.7%) and financial burden (31.6%), sole responsibility without team support (31.1%), as well as formal requirements such as forms and prescriptions (26.6%). Major facilitations were support by local specialist services such as home care nursing service (83.0%), access to a specialist paediatric palliative care consultation team (82.4%), as well as an option of exchange with colleagues (60.1%). Conclusions Altogether, the high commitment to this survey reflects the relevance of the issue for paediatricians working in general practice. Education in basic palliative care competence and communication skills was seen as an important prerequisite for the engagement in paediatric palliative home care. A local network of specialist support on site and a 24/7 on-call service are necessary in order to facilitate the implementation of basic palliative care by paediatricians in their own practice. PMID:20525318

  20. Palliative care in Malaysia: a decade of progress and going strong.

    PubMed

    Leong, Richard Lim Boon

    2003-01-01

    Palliative care first began in Malaysia in 1991, and since then there has been a growing interest in the field and its development both from the government and nongovernmental organizations. It is important to recognize the potential advantages and disadvantages of palliative care provided by both government and private programs to maximize development for the greater benefit of patients. A close relationship between these two bodies must be created so that there is smooth continuity of service and no overlapping of roles. This article highlights some thoughts on how palliative care has developed over the years from the perspective of a clinician who is currently working in the government sector and cooperating with nongovernmental organizations to develop a palliative care network in the region. PMID:15022953

  1. The unmet palliative care needs of those dying with dementia.

    PubMed

    Dempsey, Laura; Dowling, Maura; Larkin, Philip; Murphy, Kathy

    2015-03-01

    An estimated 33.9 million people are living with dementia worldwide. The overall estimated median survival time from onset of dementia to death is 4.1 years for men and 4.6 years for women, with longer survival times in those with early-onset dementia. Much has been discussed about the needs of this vulnerable group of people particularly in terms of their health-care and end-of-life care (EoLC) needs. However, the literature suggests that people with end-stage dementia are still not receiving adequate or appropriate EoLC. Difficulty diagnosing dementia, a stigma surrounding the disease, lack of education of the dementia disease process and the ability to identify complications encountered at end-stage dementia by health-care providers, families and carers are some of the factors preventing those with dementia receiving effective EoLC. Great strides have been made to improve dementia palliative care; however, this cohort of patients still receive fewer referrals to appropriate palliative care services than other terminally ill patients. PMID:25815761

  2. [Organizational and methodological issues in the development of palliative care for oncological patients].

    PubMed

    Solov'ev, V I

    2004-01-01

    The share of patients, who apply to oncology facilities with advanced pathologies, shapes up a new situation for oncologists: the sphere of palliative care of both managerial and methodological types must be promoted. Thus, 451299 patients with malignant neoplasms, including those with wide-spread forms (i.e. stages III-IV: 59.1%), were registered in Russia in 2001. One hundred and thirty structural subunits of palliative care were set up in Russia's regions for today; another 58 are being established: however, none of them could be referred to as a perfect one because the role and functions have not yet been defined for palliative care, while all subject-related publications are isolated and scanty. The functioning of hospices and palliative-care subunits is not as a rule coordinated with the oncology service or with oncology experts. This problem should be resolved through setting up the palliative-care regional systems with the role and functions of palliative care being specified for them on the basis of the existing oncology institutes, hospitals and other patient-care facilities. This would maintain the continuity of medical care rendered to oncology patients at all disease stages. PMID:15098388

  3. Palliative care in nursing homes: a comparison of high- and low-level providers.

    PubMed

    Hodgson, Nancy A; Lehning, Amanda J

    2008-01-01

    The purpose of this study was to explore staff perceptions and concerns about the use of palliative care services in the nursing home setting. Six administrators from nursing homes were purposively selected for key informant interviews. Four common themes emerged, including issues related to the culture of care, the model of care, the relationships with hospice partners, and the role of staff. Recognition of staff perceptions is an important first step in improving the utilization of palliative care services. Staff insight provided clarification related to impediments in promoting a culture of care that was person-centered and relationship-based. We conclude by identifying the solutions for raising the level of dialogue to promote palliative care practice in the nursing home environment. PMID:18414331

  4. 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

  5. [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

  6. Establishing Feasibility of Early Palliative Care Consultation in Pediatric Hematopoietic Stem Cell Transplantation.

    PubMed

    Lafond, Deborah A; Kelly, Katherine Patterson; Hinds, Pamela S; Sill, Ann; Michael, Michele

    2015-01-01

    Children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) encounter a number of distressing physical symptoms and existential distress but may not be afforded timely access to palliative care services to help ameliorate the distress. This feasibility study investigated the acceptability and outcomes of early palliative care consultation to promote comfort in this population. A longitudinal, descriptive cohort design examined both provider willingness to refer and willingness of families to receive palliative care interventions as well as satisfaction. Feasibility was demonstrated by 100% referral of eligible patients and 100% of patient and family recruitment (N = 12). Each family received 1 to 3 visits per week (ranging from 15 to 120 minutes) from the palliative care team. Interventions included supportive care counseling and integrative therapies. Families and providers reported high satisfaction with the nurse-led palliative care consultation. Outcomes included improvement or no significant change in comfort across the trajectory of HSCT, from the child and parental perspective. Early integration of palliative care in HSCT is feasible and acceptable to families and clinicians. PMID:25616372

  7. Implementation of palliative care in Lebanon: past, present, and future.

    PubMed

    Daher, Michel; Estephan, Elie; Abu-Saad Huijer, Huda; Naja, Zoher

    2008-01-01

    The goal of palliative care (PC) is to relieve suffering. PC is an urgent humanitarian need worldwide for people with cancer and other chronic fatal diseases. PC in Lebanon has made some important strides in the last decade but it is still in its infancy. More attention needs to be given in the near future to the implementation of the recommendations already listed by previous meetings and workshops. In order to do so, it is necessary to change the legislative system in Lebanon in order to recognize and to integrate this new discipline. Education and training of health professionals in PC should be provided by medical and nursing schools throughout the country. Postgraduate education in medicine and nursing and ensuing certification should be made available. Ideally, PC services should be provided from the time of diagnosis of life-threatening illness, adapting to the increasing needs of cancer patients and their families as the disease progresses into the terminal phase. They should also provide support to families in their bereavement. It is as important and essential to involve policy makers in the development of pain relief and PC services and clinics which meet the needs of the population in Lebanon. Effective PC services should be integrated into the existing health system at all levels of care, especially community and home-based care. They involve the public and the private sector and are adapted to the specific cultural, social and economic setting. In order to respond to the cancer priority needs in a community and make the best use of scarce resources, PC services should be strategically linked to cancer prevention, early detection and treatment services. The time will come for Lebanon to form the National Council for Pain Relief and Palliative Care as an advocacy and coordination body for pain relief and PC in the near future. To that effect, we believe the future is near. PMID:19534073

  8. Palliative care -- an essential component of cancer control

    PubMed Central

    MacDonald, N

    1998-01-01

    Unlike in other nations, in Canada palliative care has its origins in university hospitals. It has subsequently developed in a few Canadian schools as an academic discipline closely linked with oncology programs. Although this model is successful, other faculties of medicine and cancer centres have been slow to emulate it. Today, the situation is rapidly changing, and both palliative care and oncology professionals are re-examining the manifest need for collaborative efforts in patient care, research and education. Palliative care must be regarded as an essential component of cancer care, its principles must be applied throughout the course of the illness and, as in other phases of cancer control, palliative care should be regarded as an exercise in prevention--prevention of suffering. This article discusses practical applications that flow from acceptance of these concepts. PMID:9676548

  9. Does Palliative Care Have a Future in the Emergency Department? Discussions With Attending Emergency Physicians

    PubMed Central

    Grudzen, Corita R.; Richardson, Lynne D.; Hopper, Susan S.; Ortiz, Joanna M.; Whang, Christine; Morrison, R. Sean

    2015-01-01

    Context Palliative care focuses on the relief of pain and suffering and achieving the best possible quality of life for patients. Although traditionally delivered in the inpatient setting, emergency departments (EDs) are a new focus for palliative care consultation teams. Objectives To explore attitudes and beliefs among emergency care providers regarding the provision of palliative care services in the ED. Methods Three semistructured focus groups were conducted with attending emergency physicians from an academic medical center, a public hospital center, and a community hospital. The discussions were digitally recorded and transcribed to conduct a thematic analysis using grounded theory. A coding scheme was iteratively developed to subsequently identify themes and subthemes that emerged from the interviews. Results Twenty emergency physicians participated (mean age 41 years, range 31–61 years, median practice time nine years, 40% female). Providers acknowledged many benefits of palliative care presence in the ED, including provision of a specialized skill set, time to discuss goals of care, and an opportunity to intervene for seriously ill or injured patients. Providers believed that concerns about medicolegal issues impaired their ability to forgo treatments where risks outweigh benefits. Additionally, the culture of emergency medicined—to provide stabilization of acute medical emergencies—was sometimes at odds with the culture of palliative care, which balances quality of life with the burdens of invasive treatments. Some providers also felt it was the primary physician’s responsibility, and not their own, to address goals of care. Finally, some providers expressed concern that palliative care consultation was only available on weekdays during daytime hours. Automatic consultation based on predetermined criteria was suggested as a way to avoid conflicts with patients and family. Conclusion Emergency providers identified many benefits to palliative care consultation. Solving logistical problems and developing clear indications for consultation might help increase the use of such services. PMID:21802899

  10. The role of specialist palliative care in managing patients with multimorbidity.

    PubMed

    Calam, Molly Jane; Gwynn, Alan; Perkins, Paul

    2012-03-01

    This case report describes a patient with multiple morbidity resulting from complicated type 2 diabetes, psoriatic arthritis and abdominal surgery. It highlights the importance of specialist palliative care services in meeting his complex holistic care needs. We acknowledge the growing number of patients living with multiple morbidity and the challenges this group can present. There is then a debate around when to involve specialist palliative care services in the management of multiple morbidity given that there is often an uncertain disease trajectory. PMID:24653499

  11. Bridging the gaps in palliative care bereavement support: an international perspective.

    PubMed

    Breen, Lauren J; Aoun, Samar M; O'Connor, Moira; Rumbold, Bruce

    2014-01-01

    A review of palliative care policies and bereavement support practices in the United States, Canada, United Kingdom, Australia, and Japan demonstrated 4 challenges: questions over providing universal versus targeted support; a lack of clear evidence driving service delivery; informal or no risk assessment; and limited or no evaluation of services. Bridging the gaps between the policy and practice of palliative care bereavement support requires acknowledging the challenges of medical and public health models, improving bereavement need assessment processes, enhancing the role of primary care providers, and extending research to provide an evidence-base for interventions. PMID:24521046

  12. [Hospice palliative care education for nursing students, nurses, and advanced nursing practitioners].

    PubMed

    Lai, Wei-Shu; Ying, Wan-Ping; Chao, Co-Shi Chantal

    2009-02-01

    The aim of hospice palliative education care is to train nurses in hospice philosophy, terminal care skills, nursing care competencies, and professional reliability. Student nurses, staff nurses, and advanced practice nurses must be taught through a proper sequence, from novice to expert. Working together with patients and their families, nurses can educate and care for the physical, social and spiritual needs of terminally ill patients. Currently, problems faced in hospice palliative care education include: 1. The lack of a systematic plan focusing on hospice palliative care and terminal care in nursing schools; 2. The absence of comfort care, communications, ethics, and other relevant issues in extant education and training; 3. The limited number of institutes that currently provide in-service training; 4. The shortage of teachers proficient in both hospice care knowledge and practice; and 5. The current overdependence on traditional nursing education models, which hinders student nurse originality and delays staff nurse growth. Faced with the present issues, self-reflection, localization, and multiple teaching strategies should be the critical developmental directions of hospice palliative education. In order to improve terminal care quality, it is also important to integrate practice, education, and research in order to train more hospice palliative nurses. PMID:19221995

  13. Implementing a Palliative Care Trial in Advanced COPD: A Feasibility Assessment (The COPD IMPACT Study)

    PubMed Central

    Rocker, Graeme; Dale, Andrea; Young, Joanne; Hernandez, Paul; Sinuff, Tasnim

    2013-01-01

    Abstract Background Patients and caregivers living with advanced chronic obstructive pulmonary disease (COPD) have complex care needs and may benefit from palliative care intervention. Little is known about how best to implement and evaluate such initiatives. Objectives To determine the feasibility of: 1) implementing a customized home-based palliative care service for patients and caregivers living with advanced COPD and 2) measuring outcomes of providing such services. Design Single-centre cohort longitudinal observational study. Setting/Subjects Patients with advanced COPD and their caregivers were followed in their homes for 6 months. Measurements Health-related quality of life (HRQoL), caregiver burden, symptom severity, patient/caregiver satisfaction, utilization of acute care services, end-of-life (EOL) outcomes. Results 30 patients and 18 caregivers were enrolled over 33 months. 25 patients (83%) and 14 caregivers (77%) reached our study endpoint. 13 patients (52%) and 5 caregivers (36%) completed outcome measurements at baseline and endpoint. HRQoL, caregiver burden and symptom severity did not change. Palliative care services were welcomed and valued, yet, despite a stated preference to die at home, 16 patients who died within 18 months of study enrollment died in hospital. Conclusions Providing home-based palliative care services for patients with advanced COPD is feasible but completing repeated questionnaires is impractical. Despite significant palliative supports, managing terminal symptoms exceeded caregivers' capacity to cope and forced hospital admission. Insights into systemic barriers and limitations of current palliative care service models can provide opportunities for local program innovation aimed at improving care for advanced COPD. PMID:23317322

  14. Integration of Palliative Care in the Context of Rapid Response

    PubMed Central

    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.

    2015-01-01

    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. PMID:25644909

  15. Meaning and practice of palliative care for hospitalized older adults with life limiting illnesses.

    PubMed

    Powers, Bethel Ann; Norton, Sally A; Schmitt, Madeline H; Quill, Timothy E; Metzger, Maureen

    2011-01-01

    Objective. To illustrate distinctions and intersections of palliative care (PC) and end-of-life (EOL) services through examples from case-centered data of older adults cared for during a four-year ethnographic study of an acute care hospital palliative care consultation service. Methods. Qualitative narrative and thematic analysis. Results. Description of four practice paradigms (EOL transitions, prognostic uncertainty, discharge planning, and patient/family values and preferences) and identification of the underlying structure and communication patterns of PC consultation services common to them. Conclusions. Consistent with reports by other researchers, study data support the need to move beyond equating PC with hospice or EOL care and the notion that EOL is a well-demarcated period of time before death. If professional health care providers assume that PC services are limited to assisting with and helping patients and families prepare for dying, they miss opportunities to provide care considered important to older individuals confronting life-limiting illnesses. PMID:21584232

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

    PubMed

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

    2015-11-01

    Palliative care consultation teams (PCCTs) provide care that enhances quality of life. The effectiveness of PCCTs depends, however, on their timely utilization by other providers. The goal of this study was to examine the timing of palliative care consultation requests and responses at a single Veteran Affairs Medical Center. The median interval between admission and consultation request was 5 days (range = 0-73 days). The median interval between consultation request and death was 23 days (range = 0-847 days). In logistic regressions, timing variables were not significant predictors of whether consultation recommendations were made or implemented. There is substantial variability in when patients receive a palliative care consultation. Many patients receive palliative care within the first week of hospitalization and their final month of life. PMID:25024458

  17. The value of data collection within a palliative care program.

    PubMed

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

    2011-08-01

    Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly competitive environment. Mounting expectations by patients, hospitals, and payers and inevitable pay-for-performance paradigms have transitioned data collection procedures from novel projects to expected standard operation within usual palliative care delivery. We present types of data to collect, published guides for data collection, and how data can inform quality, value, and research within a palliative care organization. Our experiences with the Quality Data Collection Tool (QDACT) in the Carolinas Palliative Care Consortium to collect data on quality have led to valuable lessons learned in creating a data collection system. Suggested steps in forming data-sharing collaborations and building data collection procedures are shared. PMID:21556703

  18. Integrated malignant and non-malignant palliative care in Scotland.

    PubMed

    Senior, Lorna; Hubbard, Gill

    2010-06-01

    The Scottish Government promotes equity in palliative care delivery in Living and Dying Well (Scottish Government, 2008). Ten nurses, working in the community in Western Isles, participated in focus groups to discuss how palliative care needs of islanders may best be met. Analysis used Framework (Ritchie et al, 2003) and identified needs of the family unit, teamwork, specialist skills and rural issues as the main themes. Nurses feared burgeoning caseloads and expressed a need for time to share and develop knowledge and skills. They described a collaborative model of care in keeping with that recommended by Scottish Partnership for Palliative Care (2006). Further research could seek the views of island patients and families requiring long-term palliative care. PMID:20684124

  19. [Are artificial disorders common in palliative care? A Case report].

    PubMed

    Porstner, Dagmar; Masel, Eva K; Heck, Ursula

    2015-12-01

    The main task of palliative care specialists is to focus on symptom control such as pain, nausea or fatigue. Thorough anamnesis, physical examination, laboratory examination, and differential diagnosis can ensure appropriate treatment. In an increasing number of cases psychiatric conditions like depression or anxiety increase also occur so palliative care physicians need to be more prepared to handle them. The question of this case report is, how a palliative care specialist can distinguish between a malignant disease or neurological disease progression and a presentation primarily psychiatric in etiology, as is the case in factitious disorders. We are also interested in the incidence rate of such factitious disorders. Our case study demonstrates that it is rare but not impossible that a doctor will encounter factitious symptoms in the palliative setting. This suggest being aware of evidence of psychiatric origins even in discharge letters and referrals that indicate palliative care needs, to ensure that palliative care really is the best treatment option for the patient. We do believe such cases to be rare in a palliative setting, however. PMID:26620466

  20. 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…

  1. Measuring outcomes in palliative care: limitations of QALYs and the road to PalYs.

    PubMed

    Normand, Charles

    2009-07-01

    Tools for measuring outcomes in health and social care have become key parts of the processes of evaluation and setting priorities. Measures of output that can be used in all settings and specialties have the advantage that they facilitate comparisons and choices between and within patient groups. However, the most commonly used composite measure of outcomes, the quality-adjusted life year (QALY) appears not to work well in complex interventions, such as palliative care, leading to the paradox that there is evidence that people would give priority to interventions and services that would be shown not to be cost-effective, using QALYs as an outcome measure. This article explores the possible reasons for this paradox, and looks at alternative approaches that may provide better tools for setting priorities within palliative care and for comparison of palliative and other care services. PMID:19615624

  2. Opportunities for Palliative Care in Public Health.

    PubMed

    De Lima, Liliana; Pastrana, Tania

    2016-03-18

    In May 2014, the World Health Assembly, of the World Health Organization (WHO), unanimously adopted a palliative care (PC) resolution, which outlines clear recommendations to the United Nations member states, such as including PC in national health policies and in the undergraduate curricula for health care professionals, and highlights the critical need for countries to ensure that there is an adequate supply of essential PC medicines, especially those needed to alleviate pain. This resolution also carries great challenges: Every year over 20 million patients (of which 6% are children) need PC at the end of life (EOL). However, in 2011, approximately three million patients received PC, and only one in ten people in need is currently receiving it. We describe this public health situation and systems failure, the history and evolution of PC, and the components of the WHO public health model. We propose a role for public health for PC integration in community settings to advance PC and relieve suffering in the world. PMID:26989831

  3. [Euthanasia and palliative care in the Netherlands].

    PubMed

    Boisseau, Nicolas

    2004-03-27

    THE BIRTH OF THE DUTCH LAW: Euthanasia has been recently legalized in the Netherlands (since April 1, 2002). In this Article, we present the various cultural and historical factors that contributed to the law, the guidelines for the procedure and the resulting controversy. THE INTERVENING FACTORS: Internationally, the attitude concerning end of life care are heterogenic and also directly depend on religious and cultural factors. In the Netherlands, the health system promotes the maintenance at home of the terminally ill. However, the financial aspects (private health insurance) interact with the management of these patients. The rules for euthanasia are very strict and a declaration must be registered. Dedicated commissions are organised to control that the rules are applied. The current debate concerns the pertinence of the regulations, the attitude towards handicapped people and children, and the need to develop palliative care. The latter have only recently been developed in the country. The priority is focusing on old peoples' homes. The Netherlands is slow in this regard, but a new draft law is soon to be presented to the Authorities, and will most probably enable the gaps to be bridged. PMID:15105777

  4. Palliative care - what the final days are like

    MedlinePlus

    ... D, Caraceni AT, Fainsinger R, et al., eds. Palliative Medicine . 1st ed. Philadelphia, PA: Elsevier Saunders; 2008:chap 177. Rakel RE, Strauch EM. Care of the dying patient. Rakel RE, Rakel DP, ...

  5. [Trust and palliative care, the risk of vulnerability].

    PubMed

    Miniac, Véronique

    2013-10-01

    Patients receiving palliative care experience extreme vulnerability reminding them of the fragility of their human condition. How are they to trust nurses bearing bad news in these crucial moments? Trust is built on team coherence and rigorous support. PMID:24245038

  6. Why Palliative Care for Children is Preferable to Euthanasia.

    PubMed

    Carter, Brian S

    2016-02-01

    Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia. PMID:25007796

  7. Palliative care in COPD: an unmet area for quality improvement

    PubMed Central

    Vermylen, Julia H; Szmuilowicz, Eytan; Kalhan, Ravi

    2015-01-01

    COPD is a leading cause of morbidity and mortality worldwide. Patients suffer from refractory breathlessness, unrecognized anxiety and depression, and decreased quality of life. Palliative care improves symptom management, patient reported health-related quality of life, cost savings, and mortality though the majority of patients with COPD die without access to palliative care. There are many barriers to providing palliative care to patients with COPD including the difficulty in prognosticating a patients course causing referrals to occur late in a patients disease. Additionally, physicians avoid conversations about advance care planning due to unique communication barriers present with patients with COPD. Lastly, many health systems are not set up to provide trained palliative care physicians to patients with chronic disease including COPD. This review analyzes the above challenges, the available data regarding palliative care applied to the COPD population, and proposes an alternative approach to address the unmet needs of patients with COPD with proactive primary palliative care. PMID:26345486

  8. Retroperitoneal Endodermal Sinus Tumor Patient with Palliative Care Needs.

    PubMed

    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

  9. 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

  10. 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…

  11. [The current state, the possibilities and difficulties of palliative and hospice care in Hungary].

    PubMed

    Hegedűs, Katalin; Lukács, Miklós; Schaffer, Judit; Csikós, Agnes

    2014-09-21

    Hospice-palliative care has existed in Hungary for more than 20 years but physicians know very little about it. The objective of the study is to give detailed practical information about the possibilities and the reasonability of hospice care and the process of how to have access to it. The authors review and analyze the database of the national Hospice-Palliative Association database to provide most recent national data on hospice-palliative care. In addition, legal, financial and educational issues are also discussed. At present there are 90 active hospice providers in Hungary, which provide service for more than 8000 terminally ill cancer patients. According to WHO recommendations there would be a need for much more service providers, institutional supply and more beds. There are also problems concerning the attitude and, therefore, patients are admitted into hospice care too late. Hospice care is often confused with chronic or nursing care due to lack of information. The situation may be improved with proper forms of education such as palliative licence and compulsory, 40-hour palliative training for residents. The authors conclude that a broad dissemination of data may help to overcome misbeliefs concerning hospice and raise awareness concerning death and dying. PMID:25217766

  12. [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. PMID:24095168

  13. Audit of referrals to a hospital palliative care team: role of the bilingual health-care worker.

    PubMed

    Ackroyd, Rajeena

    2003-08-01

    There is much interest in whether the needs of ethnic minority patients are being met by palliative care services. Bradford has a population that includes people from several different ethnic minorities, the largest number of whom originate from Pakistan. In May 2000 a bilingual health-care worker (BHCW) was appointed to work with the local palliative care teams to improve service provision for patients from South Asia. An audit of referrals to Bradford teaching hospitals palliative care team from October 2001 to September 2002 looked at the role of the BHCW. It was found that the BHCW was involved in 41% of referrals from ethnic minorities. In addition to aiding communication, the BHCW also provided an important link between the community and the hospital for patients and had a role in bereavement and family support. This audit indicates the BHCW role can be successful and may be useful for other population groups. PMID:12968121

  14. 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

  15. Integrating palliative care in the surgical and trauma intensive care unit: A report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care

    PubMed Central

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

    2012-01-01

    Objective Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit. Data Sources We searched the MEDLINE database from inception to May 2011 for all English language articles using the term “surgical palliative care” or the terms “surgical critical care,” “surgical ICU,” “surgeon,” “trauma” or “transplant,” and “palliative care” or “end-of- life care” and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report. Data Extraction and Synthesis We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families. Conclusions Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. “Consultative,” “integrative,” and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to attitudinal factors and “culture” in the unit and institution. Approaches that emphasize delivery of palliative care together with surgical critical care hold promise to better integrate palliative care into the surgical intensive care unit. PMID:22080644

  16. Clinical supervision in the palliative care team setting: a concrete approach to team wellness.

    PubMed

    Edmonds, Kyle P; Yeung, Heidi N; Onderdonk, Christopher; Mitchell, William; Thornberry, Kathryn

    2015-03-01

    Clinical supervision is a structured, case-based approach to learning that is used most often in the mental health field. An established palliative care consultation service at a large, academic medical center implemented a modified clinical supervision model in an effort to improve team members' awareness of their own emotions and the way those emotions impact behavior during, primarily, clinical encounters. This report discusses clinical supervision in detail and, by way of a case, illustrates the power of this intervention as a source of self-care and a concrete approach to managing palliative care team well-being. PMID:25517027

  17. [Symptomatic treatment and palliative care of ALS].

    PubMed

    Kwieci?ski, H

    2001-01-01

    Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease, affecting upper and lower motor neurons, which eventually progresses to respiratory deterioration and death in most of the patients. Only one drug, riluzole, has been approved for the treatment of ALS. The drug has a benefit, prolonging life by 3-6 months, but the disease progresses inexorably, with no better quality of life. The fundamental role of medicine is sometimes to cure, but always to bring comfort. In current situation, ALS patients need adequate palliative care more than anything else. Prognosis and treatment options should be discussed with the patient and the relatives, but full information about the prognosis may deprive the patient of hope. However, disclosure of the prognosis is necessary to obtain informed consent for management decisions such as tracheostomy and artificial ventilation. Nasal positive-pressure ventilation (BiPAP) is an alternative to tracheostomy, at least for some patients without advanced bulbar impairment. Nutritional status in patients who cannot swallow can be efficiently improved by a percutaneous endoscopic gastrostomy. (PEG). PMID:11732280

  18. Transplantation and palliative care: the convergence of two seemingly opposite realities.

    PubMed

    Molmenti, Ernesto P; Dunn, Geoffrey P

    2005-04-01

    One of the authors once asked a great transplant surgeon what came to his mind when asked about palliative care. He had two answers: the first,was somewhat simplistic; the second was profound. He said that this type of service was helpful in the ICU when there was not much more to be done surgically for a patient who was dying; the second, was a story about an individual whom he had transplanted three times (who survived!) because he and his team did not want the patient and family to give up hope. The second answer is fundamentally more in keeping with the philosophy of palliative care, despite the extraordinary specific circumstances. The surgeon demonstrated ongoing presence and non abandonment. This patient was palliated, although few surgeons could have accomplished this by doing two retransplantations! Fortunately, for the less gifted and lucky, there are many ways in which to continue a meaningful presence to an ailing or dying patient on a transplant service that do not require a transplantation procedure. One wonders why palliative care and transplantation have not been more formally acquainted in the past given the extensive overlap of the populations served, the nature of the day-to-day problems, and the intensity of the commitment to the patient. The time is ripe for a formal mutual acquaintance between palliative care specialists and transplant teams,perhaps in the format of a work group that is similar to the work groups that promoted excellence in palliative care, such as the End Stage Renal Disease Workgroup, that were grant funded by the Robert Wood Johnson Foundation. The fields of transplantation and palliative care have a treasure trove of experience that is lacking in the other that could be exchanged profitably with a great sense of satisfaction for all. PMID:15833478

  19. Negotiating futility, managing emotions: nursing the transition to palliative care.

    PubMed

    Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia; Yates, Patsy; Hardy, Janet

    2015-03-01

    Nurses play a pivotal role in caring for patients during the transition from life-prolonging care to palliative care. This is an area of nursing prone to emotional difficulty, interpersonal complexity, and interprofessional conflict. It is situated within complex social dynamics, including those related to establishing and accepting futility and reconciling the desire to maintain hope. Here, drawing on interviews with 20 Australian nurses, we unpack their accounts of nursing the transition to palliative care, focusing on the purpose of nursing at the point of transition; accounts of communication and strategies for representing palliative care; emotional engagement and burden; and key interprofessional challenges. We argue that in caring for patients approaching the end of life, nurses occupy precarious interpersonal and interprofessional spaces that involve a negotiated order around sentimental work, providing them with both capital (privileged access) and burden (emotional suffering) within their day-to-day work. PMID:25246331

  20. 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. PMID:23975414

  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

    2016-03-01

    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. Palliative care/physician-assisted dying: alternative or continuing care?

    PubMed

    Malakoff, Marion

    2006-01-01

    End-of-life care for dying patients has become an issue of importance to physicians as well as patients. The debate centers around whether the option of physician-assisted suicide cuts off, or diminishes the value of palliative care. This ongoing attention makes the crafting of advance directives from patients detailing their end-of-life choices essential. Equally important is the appointment of a health care surrogate. The surrogate, when the patient is too ill to make decisions, should be empowered to make them in his stead. No American court has found a clinician liable for wrongful death for granting a request to refuse life support. An entirely separate issue is that of legalized physician-assisted suicide. As of this writing, only Oregon has made this legal (see Gonzales v. Oregon). It is likely that this issue will be pursued slowly through the state courts, making advance directives and surrogacy all the more crucial. PMID:17219935

  3. Ethical Conduct of Palliative Care Research: Enhancing Communication Between Investigators and Institutional Review Boards

    PubMed Central

    Abernethy, Amy P.; Capell, Warren H.; Aziz, Noreen M.; Ritchie, Christine; Prince-Paul, Maryjo; Bennett, Rachael E.; Kutner, Jean S.

    2014-01-01

    Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide Institutional Review Boards (IRBs) in applying standard ethical principles and terms – in a specific way – to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this paper provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work. PMID:24879998

  4. 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 professionals, patients and families is required to provide a broader interdisciplinary understanding of futility and contributions to the negotiation of palliative care. PMID:25270859

  5. Palliative care, double effect and the law in Australia.

    PubMed

    White, B P; Willmott, L; Ashby, M

    2011-06-01

    Care and decision-making at the end of life that promotes comfort and dignity is widely endorsed by public policy and the law. In ethical analysis of palliative care interventions that are argued potentially to hasten death, these may be deemed to be ethically permissible by the application of the doctrine of double effect, if the doctor's intention is to relieve pain and not cause death. In part because of the significance of ethics in the development of law in the medical sphere, this doctrine is also likely to be recognized as part of Australia's common law, although hitherto there have been no cases concerning palliative care brought before a court in Australia to test this. Three Australian States have, nonetheless, created legislative defences that are different from the common law with the intent of clarifying the law, promoting palliative care, and distinguishing it from euthanasia. However, these defences have the potential to provide less protection for doctors administering palliative care. In addition to requiring a doctor to have an appropriate intent, the defences insist on adherence to particular medical practice standards and perhaps require patient consent. Doctors providing end-of-life care in these States need to be aware of these legislative changes. Acting in accordance with the common law doctrine of double effect may not provide legal protection. Similar changes are likely to occur in other States and Territories as there is a trend towards enacting legislative defences that deal with the provision of palliative care. PMID:21707893

  6. 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

  7. 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

  8. 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. PMID:26189362

  9. IMhPaCT: an education strategy for cross-training palliative care and mental health clinicians.

    PubMed

    Taylor, Janet; Swetenham, Kate; Myhill, Karin; Picot, Sharon; Glaetzer, Karen; Loon, Antonia van

    2012-06-01

    The Australian Integrated Mental Health and Palliative Care Task (IMhPaCT) project aimed to improve the quality of palliative care for people with a severe and persistent mental illness and those who develop mental health issues as a response to their diagnosis of a life-limiting illness. These patients and families are generally cases of high complexity and require strong collaboration and cooperation across various service sectors. Education across both palliative care and mental health services was identified as a key objective in improving palliative care service delivery in this patient population. This article specifically addresses one aspect of the project-the education strategy. The processes of development, implementation, and evaluation of outcomes are discussed. PMID:22885902

  10. 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

  11. 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

  12. Methodological Research Priorities in Palliative Care and Hospice Quality Measurement.

    PubMed

    Dy, Sydney Morss; Herr, Keela; Bernacki, Rachelle E; Kamal, Arif H; Walling, Anne M; Ersek, Mary; Norton, Sally A

    2016-02-01

    Quality measurement is a critical tool for improving palliative care and hospice, but significant research is needed to improve the application of quality indicators. We defined methodological priorities for advancing the science of quality measurement in this field based on discussions of the Technical Advisory Panel of the Measuring What Matters consensus project of the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association and a subsequent strategy meeting to better clarify research challenges, priorities, and quality measurement implementation strategies. In this article, we describe three key priorities: 1) defining the denominator(s) (or the population of interest) for palliative care quality indicators, 2) developing methods to measure quality from different data sources, and 3) conducting research to advance the development of patient/family-reported indicators. We then apply these concepts to the key quality domain of advance care planning and address relevance to implementation of indicators in improving care. Developing the science of quality measurement in these key areas of palliative care and hospice will facilitate improved quality measurement across all populations with serious illness and care for patients and families. PMID:26596877

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

    PubMed Central

    Dean, Mervyn; Hartwig, Kari; Mmbando, Paul Z.; Sayed, Abduraoof; de Vries, Elma

    2014-01-01

    Abstract Background In Tanzania, a country of 42 million, access to oral morphine is rare. Aim To demonstrate the effectiveness of palliative care teams in reducing patients’ pain and in increasing other positive life qualities in the absence of morphine; and to document the psychological burden experienced by their clinical providers, trained in morphine delivery, as they observed their patients suffering and in extreme pain. Setting One hundred and forty-five cancer patients were included from 13 rural hospitals spread across Tanzania. Method A mixed method study beginning with a retrospective quantitative analysis of cancer patients who were administered the APCA African POS tool four times. Bivariate analyses of the scores at time one and four were compared across the domains. The qualitative arm included an analysis of interviews with six nurses, each with more than five years’ palliative care experience and no access to strong opioids. Results Patients and their family caregivers identified statistically significant (p < 0.001) improvements in all of the domains. Thematic analysis of nurse interviews described the patient and family benefits from palliative care but also their great distress when ‘bad cases’ arose who would likely benefit only from oral morphine. Conclusion People living with chronic cancer-related pain who receive palliative care experience profound physical, spiritual and emotional benefits even without oral morphine. These results demonstrate the need for continued advocacy to increase the availability of oral morphine in these settings in addition to palliative care services. PMID:26245417

  14. Pain and symptom control in paediatric palliative care.

    PubMed

    Stevens, M M; Dalla Pozza, L; Cavalletto, B; Cooper, M G; Kilham, H A

    1994-01-01

    Important differences become evident in a comparison of cancer pain between children and adults. Management of pain in children is commonly multidisciplinary, is less dependent on invasive measures and relies more on systemic therapy. Children are not little adults: their immaturity, developing cognition and dependence all influence their experience and interpretation of pain. Much progress has been made in altering practices such as under-prescribing and underdosing that have adversely affected adequate control of pain in children. The challenge for paediatric health care providers in the mid 1990s is not only to be informed of current practices in pain and symptom control in paediatric palliative care, but also to remember to establish those practices in day to day management. Even though pain and its effects in children are now better understood, it is often still not managed optimally. Good management of pain in children depends on accurate assessment. In the past 10 years, assessment of pain in children has advanced considerably. However, assessment of pain in the preverbal child is still inadequate and in need of attention. Sedation, tolerance and involuntary movements may occur as side effects of opioids in children and may cause significant problems in management of the dying child. Psychostimulants can diminish sedation to some extent, but there is little information as yet on the value of these drugs in children. Tolerance to opioids may develop quickly, leading to poor control of pain and distress for the child. Strategies to improve management of tolerance include use of regional anaesthetic techniques such as the epidural/intrathecal route for opioid administration. Involuntary movements induced by opioids are uncommon but have the potential to cause significant distress. The mechanisms underlying these side effects of opioids need to be established. Strategies are needed for the effective treatment and prevention of these side effects. Neuropathic pain can be severe, distressing and difficult to treat. Experience of its treatment in terminally ill children is limited. Effective use of tricyclic antidepressants and systemically administered local anaesthetics is still to be determined. Regional anaesthetic techniques may be of great benefit when neuropathic pain cannot be controlled with systemic therapy. Procedural pain is more common than pain related to disease in the management of paediatric cancer. Further research is needed to identify the best approach to its management. We have found nitrous oxide to be of great benefit in management of procedural pain in children. Non-pharmacological methods of treatment of pain in children, such as transcutaneous electrical nerve stimulation or acupuncture, may also be useful and should receive continuing evaluation. There are significant and current issues in paediatric palliative care besides management of pain. There are difficulties in the provision of home nursing care for children with cancer in the terminal phase of their illness, including lack of community nursing services at night and on weekends and lack of adequate home help for parents. Attitudes of staff involved in the care of the child and family and their commitment to working as a multidisciplinary team strongly influence the quality and success of care given. Pain control and palliative medicine are evaluable by measures of quality assurance or outcome, and adoption of such evaluations should improve standards of care. Euthanasia in children is even more difficult as an ethical dilemma than in adults. Optimum symptom control with current techniques should almost always obviate its consideration. We are opposed to euthanasia. Psychosocial and cultural issues all influence the family's experience of palliative care. Further research is necessary in all of these areas.(ABSTRACT TRUNCATED) PMID:8564995

  15. 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

  16. Palliative care outcome measures in COPD patients: a conceptual review.

    PubMed

    Antoniu, Sabina Antonela; Boiculese, Lucian Vasile

    2016-04-01

    In chronic obstructive pulmonary disease (COPD), palliative care is appropriate in very advanced stages based on recognition of its need when conventional therapy is no longer able to control symptoms, disease morbidity, or to improve/maintain an acceptable quality of life. Palliative care aims to improve quality of life, or, if applied specifically at the end-of-life, to ensure comfortable care. In COPD palliative care effectiveness of interventions should be quantified with outcome measures able to better capture the holistic nature of approaches and not only the specific features of disease. These should include: physical outcomes, psychological outcomes, social outcomes, spiritual outcomes. Such measures are discussed in this review along with arguments supporting their use. PMID:26967768

  17. 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

  18. Inadequate Palliative Care in Chronic Lung Disease. An Issue of Health Care Inequality.

    PubMed

    Brown, Crystal E; Jecker, Nancy S; Curtis, J Randall

    2016-03-01

    Patients with chronic lung diseases suffer higher symptom burden, lower quality of life, and greater social isolation compared with patients with other diagnoses, such as cancer. These conditions may be alleviated by palliative care, yet palliative care is used less by patients with chronic lung disease compared with patients with cancer. Underuse is due, in part, to poor implementation of primary palliative care and inadequate referral to specialty palliative care. Lack of primary and specialty palliative care in patients with chronic lung disease falls short of the minimum standard of competent health care, and represents a disparity in health care and a social injustice. We invoke the ethical principles of justice and sufficiency to highlight the importance of this issue. We identify five barriers to implementing palliative care in patients with chronic lung disease: uncertainty in prognosis; lack of provider skill to engage in discussions about palliative care; fear of using opioids among patients with chronic lung disease; fear of diminishing hope; and perceived and implicit bias against patients with smoking-related lung diseases. We propose mechanisms for improving implementation of palliative care for patients with chronic lung disease with the goal of enhancing justice in health care. PMID:26730490

  19. Health care costs in end-of-life and palliative care: the quest for ethical reform.

    PubMed

    Jennings, Bruce; Morrissey, Mary Beth

    2011-01-01

    Health reform in the United States must address both access to medical services and universal insurance coverage, as well as health care cost containment. Uncontrolled health care costs will undermine improvements in access and coverage in the long-run, and will also be detrimental to other important social programs and goals. Accordingly, the authors offer an ethical perspective on health care cost control in the context of end-of-life and palliative care, an area considered by many to be a principal candidate for cost containment. However, the policy and ethical challenges may be more difficult in end-of-life care than in other areas of medicine. Here we discuss barriers to developing high quality, cost effective, and beneficial end-of-life care, and barriers to maintaining a system of decision making that respects the wishes and values of dying patients, their families, and caregivers. The authors also consider improvements in present policy and practice-such as increased timely access and referral to hospice and palliative care; improved organizational incentives and cultural attitudes to reduce the use of ineffective treatments; and improved communication among health professionals, patients, and families in the end-of-life care planning and decision-making process. PMID:22150176

  20. 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

  1. 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

  2. Quality Measures for Palliative Care in Patients With Cancer: A Systematic Review

    PubMed Central

    Kamal, Arif H.; Gradison, Margaret; Maguire, Jennifer M.; Taylor, Donald; Abernethy, Amy P.

    2014-01-01

    Purpose: Quality assessment is a critical component of determining the value of medical services, including palliative care. Characterization of the current portfolio of measures that assess the quality of palliative care delivered in oncology is necessary to identify gaps and inform future measure development. Methods: We performed a systematic review of MEDLINE/PubMed and the gray literature for quality measures relevant to palliative care. Measures were categorized into National Quality Forum domains and reviewed for methodology of development and content. Measures were additionally analyzed to draw summative conclusions on scope and span. Results: Two hundred eighty-four quality measures within 13 measure sets were identified. The most common domains for measure content were Physical Aspects of Care (35%) and Structure and Processes of Care (22%). Of symptom-related measures, pain (36%) and dyspnea (26%) were the most commonly addressed. Spiritual (4%) and Cultural (1%) Aspects of Care were least represented domains. Generally, measures addressed processes of care, did not delineate benchmarks for success, and often did not specify intended interventions to address unmet needs. This was most evident regarding issues of psychosocial and spiritual assessment and management. Conclusion: Within a large cohort of quality measures for palliative, care is often a focus on physical manifestations of disease and adverse effects of therapy; relatively little attention is given to the other aspects of suffering commonly observed among patients with advanced cancer, including psychological, social, and spiritual distress. PMID:24917264

  3. Analysis of palliative care content in nursing textbooks.

    PubMed

    Ferrell, B; Virani, R; Grant, M; Juarez, G

    2000-01-01

    Overall, this study demonstrates significant deficiencies in end-of-life care content in nursing textbooks. Defining palliative care, quality of life at the end of life, and issues of policy, ethics, and law are the foundation of end-of-life care. Analysis of these topics revealed a need to clarify concepts and to apply them within the context of end-of-life care. The analysis also demonstrated a need to transfer findings from palliative care research and concepts from hospice into basic education. In March 1999 the investigators convened a conference in New York in collaboration with a group of medical investigators analyzing EOL content in medical textbooks. The conference was also attended by publishers, editors, and authors of textbooks. The investigators were very encouraged by their interest in and commitment to correcting any weaknesses in their books. The investigators provided them with specific recommendations for improvement and resources for locating both appropriate content and authors with palliative care expertise. These resources are also made available on the City of Hope Pain Resource Center Web site (http:@mayday.coh.org). Achieving the overall project goal of strengthened nursing education in end-of-life care will be reached through a variety of measures. Improving textbooks is but one important step. The various disciplines involved in palliative care can contribute to this project by working in collaboration with textbook publishers. PMID:10802963

  4. 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. PMID:26878406

  5. Training mid-level providers on palliative care: bringing advanced directives and symptom assessment and management to community oncology practices.

    PubMed

    Lesperance, Mary; Shannon, Robert; Pumphrey, Phyllis K; Dunbar, Erin; Genther, Renee; Coleman, C Lynn; Tabano, Margaret; Maurer, Jennifer; Vazquez, Adrienne; Capp, Elizabeth; McMillan, Jessica; Wilkerson, Katie; Robbins, Gerald; Phillips, Dorothy Green; Howick, Priscilla; Solaun, Catherine; Sloan, Jeff; Colón-Otero, Gerardo

    2014-05-01

    Palliative care services are not available in most outpatient oncology practices. A program training 11 mid-level providers from oncology practices on advanced directive discussions and supportive symptom assessment and management performed by palliative care specialists was completed. A follow-up session 9 months later identified barriers to implementation. Of the 11 mid-level providers, 8 participated in the follow-up session, and 9 of the 11 providers implemented advanced directive's discussions and symptom assessment and management for patients with metastatic cancer. Main barriers included uncertainties about reimbursement, patients' lack of knowledge about palliative care, and lack of access to supportive services. This program successfully promoted advanced directive discussions and supportive/palliative care symptom assessment and management to community oncology practices, which will hopefully translate into improved quality of life for patients with metastatic cancer. PMID:23616274

  6. 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 about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. Significance of results The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care. PMID:22617619

  7. 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. PMID:25723619

  8. 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

  9. Development and efficacy of music therapy techniques within palliative care.

    PubMed

    Clements-Cortés, Amy

    2016-05-01

    Music therapy is increasingly becoming an intervention used in palliative care settings around the globe. While the specialty of palliative care music therapy is relatively young having emerged in the late 1980s, there is a strong and growing body of evidence demonstrating its efficacy in assisting a variety of issues common at end-of-life. There are multiple music therapy techniques that are implemented with clients in palliative care and they can be categorized in four broad areas: receptive, creative, recreative and combined. These techniques will be presented with respect to their development by clinicians as supported by the descriptive and research literature. Information is also provided on the use of music therapy in facilitating the grieving and bereavement process. PMID:25986297

  10. 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

  11. Identifying patients suitable for palliative care - a descriptive analysis of enquiries using a Case Management Process Model approach

    PubMed Central

    2012-01-01

    Background In Germany, case management in a palliative care unit was first implemented in 2005 at the Department of Palliative Medicine at the University Hospital Cologne. One of the purposes of this case management is to deal with enquiries from patients and their relatives as well as medical professionals. Using the Case Management Process Model of the Case Management Society of America as a reference, this study analysed (a) how this case management was used by different enquiring groups and (b) how patients were identified for case management and for palliative care services. The first thousand enquiries were analysed considering patient variables, properties of the enquiring persons and the content of the consultations. Results Most enquiries to the case management were made by telephone. The majority of requests regarded patients with oncological disease (84.3 %). The largest enquiring group was composed of patients and relatives (40.8 %), followed by internal professionals of the hospital (36.1 %). Most of the enquiring persons asked for a patient’s admission to the palliative care ward (46.4 %). The second most frequent request was for consultation and advice (30.9 %), followed by requests for the palliative home care service (13.3 %). Frequent reasons for actual admissions were the need for the treatment of pain, the presence of symptoms and the need for nursing care. More than half of the enquiries concerning admission to the palliative care ward were followed by an admission. Conclusions Case management has been made public among the relevant target groups. Case management as described by the Case Management Process Model helps to identify patients likely to benefit from case management and palliative care services. In addition, with the help of case management palliative patients may be allocated to particular health care services. PMID:23116368

  12. Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial

    PubMed Central

    2014-01-01

    Background Palliative care is a vital component of patient-centered care. It has increasingly become central to the management and care of seriously ill patients by integrating physical, psychosocial, and spiritual supportive services. Through qualitative inquiry, this paper examines cancer patients’ perceptions of the process and outcomes of the pain and palliative care consultative services they received while enrolled in a clinical trial. Methods A qualitative analysis of open-ended questions was conducted from a sub-sample of patients (n = 34) with advanced cancers enrolled in a randomized controlled trial exploring the efficacy of a palliative care consult service. Two open-ended questions focused on patient perceptions of continued participation on their primary cancer clinical trials and their perceptions of interdisciplinary communication. Results Three overarching themes emerged when asked whether receiving pain and palliative care services made them more likely to remain enrolled in their primary cancer clinical trial: patients’ past experiences with care, self-identified personal characteristics and reasons for participation, and the quality of the partnership. Four themes emerged related to interdisciplinary communication including: the importance of developing relationships, facilitating open communication, having quality communication, and uncertainty about communication between the cancer clinical trial and palliative care teams. Conclusions Our findings suggest the importance of qualitative inquiry methods to explore patient perceptions regarding the efficacy of palliative care services for cancer patients enrolled in a cancer clinical trial. Validation of patient perceptions through qualitative inquiry regarding their pain and palliative care needs can provide insight into areas for future implementation research. Trial registration NIH Office of Human Subjects Research Protection OHSRP5443 and University of Pennsylvania 813365 PMID:25276094

  13. Palliative care for critically ill older adults: dimensions of nursing advocacy.

    PubMed

    Dawson, Katherine A

    2008-01-01

    Overall, critical care nursing and medical teams are inadequately prepared to deliver palliative care for the critically ill geriatric patient. Conversations with nursing and medical providers caring for the frail elderly within an intensive care unit often reveal feelings of concern for overtreatment of patients when hope for improvement has diminished. Decline of critically ill elders regularly results in conflicts and disagreements surrounding care directives among patient, family, nursing, and specialty service teams. Uncertainty shrouds the care goals as the patient declines within a critical care setting. Nursing and medical providers caring for the critically ill elderly population often waver anxiously between aggressive verses palliative care measures and are troubled by ethical dilemmas of "doing more harm than good." Collaborative, interdisciplinary practice in the face of such dilemmas offers an interactive and practical approach that promotes clinical excellence and improves quality of care for the critically ill. This article defines palliative care, discusses the complexities of caring for the critically ill older adult, and suggests recommendations for nursing practice. PMID:18316932

  14. Palliative Care Cuts Costs for Cancer Patients with Other Health Problems

    MedlinePlus

    ... nlm.nih.gov/medlineplus/news/fullstory_156608.html Palliative Care Cuts Costs for Cancer Patients With Other Health ... 8, 2016 FRIDAY, Jan. 8, 2016 (HealthDay News) -- Palliative care reduces hospital costs for incurable cancer patients who ...

  15. How to Get It -- Step 2: Meet the Palliative Care Team

    MedlinePlus

    ... or treatment. Follow Us What Is Palliative Care Definition Pediatric Palliative Care Disease Types Glossary FAQ How to Get It Find a Team Meet the Team Is It Right for You Blog All Posts News Stories Quick ...

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

    PubMed

    Dening, Karen Harrison

    2016-02-01

    Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted. PMID:26838656

  17. 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. PMID:23977780

  18. 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 costs borne by different stakeholders. PMID:25443659

  19. 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.

  20. [Hospice palliative care policy in Taiwan: past developments and future perspectives].

    PubMed

    Chen, Rong-Chi

    2015-04-01

    The duty of medical personnel is to save lives, cure diseases, relieve suffering, and promote health. Medical personnel care for their patients from birth to death. At the end of terminal care, medical personnel should maintain a religious / holistic commitment to their patients to "remove their suffering and provide happiness" as much as possible. Mackay Hospital opened the first hospice in Taiwan in 1990. Financial coverage of hospice care by the National Health Insurance, the enactment of the Hospice Palliative Act, the attention of Hospital Accreditation to hospice care, and the establishment of the system of clinical chaplaincy have all contributed to the development of hospice palliative care in Taiwan. Application of the Taiwan Coma Scale has been shown to decrease the use of futile life sustaining treatments in the ICU. The author hopes that nurses may further expand community hospice care services to help facilitate the peaceful dying of terminal patients at home. PMID:25854943

  1. Palliative Care for Patients with Chronic Obstructive Pulmonary Disease: Current Perspectives

    PubMed Central

    Choudhuri, Anirban Hom

    2012-01-01

    Chronic obstructive pulmonary disease (COPD) is a chronic respiratory illness with a myriad of disabling symptoms and a decline in the functional parameters that affect the quality of life. The mortality and morbidity associated with severe COPD is high and the patients are mostly housebound and in need of continuous care and support. The uncertain nature of its prognosis makes the commencement of palliative care and discussion of end-of-life issues difficult even in the advanced stage of the disease. This is often compounded by inadequate communication and counseling with patients and their relatives. The areas that may improve the quality of care include the management of dyspnea, oxygen therapy, nutritional support, antianxiety, and antidepressant treatment, and advance care planning. Hence, it is necessary to pursue a holistic care approach for palliative care services along with disease-specific medical management in all such patients to improve the quality of life in end-stage COPD. PMID:22837604

  2. Palliative Care Issues in Amyotrophic Lateral Sclerosis: An Evidenced-Based Review.

    PubMed

    Karam, Chafic Y; Paganoni, Sabrina; Joyce, Nanette; Carter, Gregory T; Bedlack, Richard

    2016-02-01

    As palliative care physicians become increasingly involved in the care of patients with amyotrophic lateral sclerosis (ALS), they will be asked to provide guidance regarding the use of supplements, diet, exercise, and other common preventive medicine interventions. Moreover, palliative care physicians have a crucial role assisting patients with ALS in addressing health care decisions to maximize quality of life and cope with a rapidly disabling disease. It is therefore important for palliative care physicians to be familiar with commonly encountered palliative care issues in ALS. This article provides an evidenced-based review of palliative care options not usually addressed in national and international ALS guidelines. PMID:25202033

  3. 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. PMID:19005956

  4. [Implementation of a palliative care concept in a geriatric acute care hospital].

    PubMed

    Hagg-Grün, U; Lukas, A; Sommer, B-N; Klaiber, H-R; Nikolaus, T

    2010-12-01

    To integrate palliative care patients into an acute geriatric ward requires extensive and continuous education and preparation of all participating professionals. It can be a lengthy process to integrate palliative care concepts despite cooperation of the hospital administration. The group of patients to be integrated differs from the patients of regular geriatric wards because of a higher percentage of relatively young oncologic patients and they differ from a regular palliative ward because about 50% are non-oncologic patients, while the average age is much higher than in normal palliative care. It is possible to integrate specialized palliative care into a regular geriatric ward. Patients admitted without palliative intention will benefit the most from ward-integrated palliative care if the treatment aim turns this way. Ward-integrated palliative care can be an integral part of treating geriatric patients in addition to acute geriatric medicine, rehabilitation, and prevention. It can also provide caretakers and patients with the benefits from continuity of treatment and care. PMID:21085974

  5. 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

  6. 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

  7. Palliative care: a suitable setting for undergraduate interprofessional education.

    PubMed

    Wee, B; Hillier, R; Coles, C; Mountford, B; Sheldon, F; Turner, P

    2001-11-01

    Effective delivery of high-quality palliative care requires effective interprofessional teamworking by skilled health and social care professionals. Palliative care is therefore highly suitable for sowing the seeds of interprofessional teamworking in early professional education. This paper describes experiences of running undergraduate interprofessional workshops in palliative care for medical, nursing, social work, physiotherapy and occupational therapy students. These workshops are unusual in three respects: first, the involvement of family carers mean that these learning experiences are rooted in clinical reality; secondly, there is no attempt to 'tidy up' the story for the students; thirdly, unlike many undergraduate interprofessional programmes, these workshops have been sustained over several years. Evaluation of these workshops demonstrate that students value and enjoy the opportunity to work together; they find the experience moving, informative and interesting. Feedback from carers showed that they appreciated the opportunity to present their real-life experiences to students. Our evidence suggests that palliative care is a suitable subject for undergraduate interprofessional education. PMID:12403506

  8. Role of the advanced practice nurse in palliative care.

    PubMed

    George, Tintu

    2016-03-01

    Palliative care is given to improve the quality of life of patients who have a serious or life-threatening disease. The role of the advanced practice nurse (APN) has significant value in this speciality. APNs provide holistic care, along with diagnostic and treatment expertise, and at the same time evaluate cost-effective use of resources. Palliative care APNs are specialists and leaders in disease-modifying care, pain and symptom management, giving attention to highest quality of life possible, and compassionate end-of-life care. The role of the APN has been highly recognised in the US and the aim of this article is to investigate this role. The article explores background, significance and a review of the literature. It concludes by emphasising the importance of APNs. PMID:27018740

  9. Home-based palliative care for adult cancer patients in Ibadan—a three year review

    PubMed Central

    Omoyeni, NE; Soyannwo, OA; Aikomo, OO; Iken, OF

    2014-01-01

    Home-based palliative care is a recognised model of health service provision globally, but is just emerging in Nigeria. The aim of this study isto review the spectrum of adult cancer patients involved in home-based palliative care, the services provided, outcome and benefits. Methods Records of all adult cancer patients seen on home-based palliative care between March 2009 and January 2013 by the hospice and palliative care unit, University College Hospital (UCH), Ibadan were reviewed. Their biographical data, days on programme, diagnosis, stage of disease, major complaint, pain score, other symptoms, services offered, number of home visits, follow-up, and outcomes were extracted, reviewed, and analysed. The data were analysed using SPSS version 16.0. Results Sixty patients were enrolled during the study period: there were 20 (33.3%) males and 40 (66.7%) females out of a total of 787 patients. All of them reside within catchment area of the hospice. Breast and prostate cancer constitute 21.7% each, gastrointestinal 16.7%, liver 11.7%, and cervical cancer 10.0%. Homes were visited 1–23 times per person. Days on programme ranged from 9–1207 days (average: 286 days). Pain was reported by 52 (86.7%) with scores of 7 to10 in 26 (50.0%). Only eight (13.3%) were pain-free. Services offered included pain and other symptom control, counselling and training for carers at home, provision of funds and comfort packs, bereavement services. The cost of services was heavily subsidised by the Centre for Palliative Care, Nigeria (CPCN), a non-governmental organisation and UCH. Although all patients are now deceased, the compassionate care received at a subsidised cost was highly valued, as shown from the appreciative comments of relations and carers. Conclusion Home-based palliative care provided at low cost was beneficial to patients and their families. More can be achieved through the training of more health professionals, increased funding, and increased public awareness of the services. PMID:25624871

  10. 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

  11. Advance care planning and palliative medicine in advanced dementia: a literature review

    PubMed Central

    Jethwa, Ketan Dipak; Onalaja, Oluwademilade

    2015-01-01

    Aims and method To assess the factors that affect the clinical use of advanced care planning and palliative care interventions in patients with dementia. A literature search of Medline, Embase and PsycINFO was performed to identify themes in advanced care planning and palliative care in dementia. Results In total, 64 articles were found, including 12 reviews, and three key areas emerged: barriers to advanced care planning, raising awareness and fostering communication between professionals and patients, and disease-specific interventions. Clinical implications Most of the studies analysed were carried out in the USA or Continental Europe. This narrative review aims to help guide future primary research, systematic reviews and service development in the UK. PMID:26191437

  12. [Palliative care in non-cancer, chronic, progressive diseases].

    PubMed

    Radványi, Ildikó; Nagy, Lajos; Balogh, Sándor; Csikós, Ágnes

    2015-10-18

    Malignant and other chronic diseases cause the death of 2.5 million people in Europe annually. It is anticipated that this number will grow due to the aging of the European population. The death of a significant proportion of patients having progressive chronic disease is preceded by an extended end of life stadium. In this stage the patients have severe symptoms and pain that necessitate their symptomatic treatment and palliative care. The assessment of the life expectancy of patients, estimation of the prognosis of their illness and, therefore, selection of patients with a need of intensified palliative care often pose difficulties. This paper provides a summary on the basic elements of "good palliative care". It introduces the most frequent models for the procession of chronic diseases and those indicators that help practicing doctors to recognise easier patients with a need of intensified palliative care, and as a result provides more adequate medical attendance that is better suited to the specific needs of the patients. PMID:26551310

  13. 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. PMID:25663153

  14. 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

  15. 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…

  16. 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)

  17. [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

  18. 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…

  19. 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…

  20. Networking of Palliative Care at the Corporate Level

    PubMed Central

    Rao, Kishore; Simha, Nagesh

    2011-01-01

    This article is a story of networking of palliative care at the corporate level. This gives an insight that if you have will and dedication then you can imagine and make it true that networking can start even before the birth of an organization. PMID:21811363

  1. Initiating palliative care conversations: lessons from Jewish bioethics.

    PubMed

    Schultz, Michael; Bar-Sela, Gil

    2013-03-01

    What are the ethical responsibilities of the medical staff (doctors, nurses, social workers, and chaplains) regarding the preservation of meaningful life for their patients who are approaching the end of life (EOL)? In particular, what is the staff's ethical responsibility to initiate a conversation with their patient regarding palliative care? By subjecting traditional Jewish teachings to an ethical analysis and then exploring the underlying universal principles, we will suggest a general ethical duty to inform patients of the different care options, especially in a manner that preserves hope. The principle that we can derive from Jewish bioethics teaches that the medical staff has a responsibility to help our patients live in a way that is consistent with how they understand their task or responsibility in life. For some patients, the best way to preserve a meaningful life in which they can fulfill their sense of purpose in the time that remains is to focus on palliation. For this reason, although palliative and supportive care are provided from the time of diagnosis, it is critical we make sure our patients realize that they have the opportunity to make a decision between either pursuing additional active treatments or choosing to focus primarily on palliative therapies to maximize quality of life. The Jewish tradition and our experience in spiritual care suggest the importance of helping patients preserve hope while, simultaneously, honestly acknowledging their situation. Staff members can play a vital role in helping patients make the most of this new period of their lives. PMID:23089233

  2. Palliative care professional education via video conference builds confidence to deliver palliative care in rural and remote locations

    PubMed Central

    2014-01-01

    Background People living in rural and remote locations are disadvantaged in accessing palliative care. This can be attributed to several factors including the role diversity and the low numbers of patients with specific conditions, as well as the difficulties rural health practitioners have in accessing opportunities for professional education. A program of multidisciplinary palliative care video conferences was presented to health practitioners across part of northern Australia in an effort to address this problem. Method The educational content of the video conferences was developed from participant responses to an educational needs assessment. Following cycles of four consecutive video conferences, 101 participants completed evaluative on-line surveys. The quantitative data were analysed using frequencies and analysis of variance tests with post-hoc analyses where appropriate, and an accessibility and remoteness index was used to classify their practice location. Results All participants found the content useful regardless of their remoteness from the tertiary centre, their years of experience caring for palliative care patients or the number of patients cared for each year. However, change in confidence to provide palliative care as a result of attending the video conferences was significant across all disciplines, regardless of location. Doctors, medical students and allied health professionals indicated the greatest change in confidence. Conclusions The provision of professional education about palliative care issues via multidisciplinary video conferencing increased confidence among rural health practitioners, by meeting their identified need for topic and context specific education. This technology also enhanced the networking opportunities between practitioners, providing an avenue of ongoing professional support necessary for maintaining the health workforce in rural and remote areas. However, more attention should be directed to the diverse educational needs of allied health professionals. PMID:24947941

  3. 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

  4. Comfort, hygiene, and safety in veterinary palliative care and hospice.

    PubMed

    Downing, Robin; Adams, Valarie Hajek; McClenaghan, Ann P

    2011-05-01

    Hygiene, comfort, and safety during pet palliative care and hospice are usually straightforward. The veterinary health care team must coordinate care to ensure that the pet and the family are fully informed and engaged in the process. End-of-life issues, euthanasia, and death are typically not everyday concerns for the pet owner. Pet owners and veterinary patients rely on the veterinary health care team to help create the structure within which the pet will die. The veterinary team can give the family-pet unit the gift of structure and multifaceted comfort. The veterinary profession must take seriously this unique niche of care. PMID:21601750

  5. 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

  6. Bridging the continuum: nutrition support in palliative and hospice care.

    PubMed

    Fuhrman, M Patricia; Herrmann, Virginia M

    2006-04-01

    Clinicians and patients in today's technically focused healthcare environment are often faced with decisions of what should be done vs what could be done. The decision to provide or not provide nutrition support during palliative care and hospice care requires an understanding of and respect for patient wishes, an appreciation for the expectations of the patient and family, and open and effective communication. There can be confusion and disagreement concerning what nutrition therapies should be continued and which ones stopped. These decisions can be facilitated by answering the question: When do the burdens of nutrition support outweigh the benefit to the patient? The patient, family members, and healthcare providers should openly discuss and agree upon the goals of nutrition support during palliative care and hospice care. PMID:16556923

  7. Benchmarking: a tool for excellence in palliative care.

    PubMed

    Murray, J A; Murray, M H

    1992-01-01

    Quietly and without fanfare, total quality management (TQM) is being implemented in a branch of health care where quality of care has particular impact on the patient's comfort and well-being. Some palliative care providers, dedicated to improving the quality of life for the dying, have fulfilled all the criteria to be contenders for prestigious quality honors like the Baldrige Award in the United States and the Canada Award for Excellence. Their secret is simple: the patient defines quality, and the palliative care team acts on that definition. Benchmarking, a TQM tool, allows institutions and organizations to benefit from sharing their best processes, and keeps the TQM continuous improvement cycle on track. PMID:1487793

  8. Out-of-hours GPs and palliative care-a qualitative study exploring information exchange and communication issues

    PubMed Central

    2010-01-01

    Background Out-of-hours general practitioners (GPs) cover the community over a significant proportion of a given week, and palliative care patients are seen as a priority. Little is known about how well these GPs feel supported in their line of work and whether communication exchanges work well for the proportion of their patients who have palliative care needs. For this study, GPs who provide out-of-hours care were interviewed in order to explore factors that they identified as detrimental or beneficial for good communication between themselves, patients, relatives and other professionals, specifically to palliative care encounters. Methods Nine GPs were interviewed using face-to-face semi-structured interviews. All nine GPs worked regular out-of-hours sessions. Data from transcripts was analysed using Interpretative Phenomenological Analysis. Results A predominant theme expressed by GPs related to constraints within the system provided by the local private company owned out-of-hours provider. A strong feeling of 'being alone out there' emerged, with some GPs more willing to call for help than others, and others expressing their concern at access to pharmacies and medication being very inconsistent. Out-of-hours GPs felt left alone on occasion, unable to access daytime services and not knowing who to call for advice. Information hand-over systems from in-hours to out-of-hours with regard to palliative care were felt to be inadequate. Out-of-hours doctors interviewed felt left out of the care loop; handover sheets from specialist palliative care providers were a rarity. Conclusions Out-of-hours services need to be mindful of the needs of the GPs they employ, in particular relating to the palliative care they provide in this setting. Other healthcare professionals should aim to keep their local out-of-hours service informed about palliative care patients they may be called to see. PMID:20704741

  9. Survey of Consumer Informatics for Palliation and Hospice Care

    PubMed Central

    Corn, Milton; Gustafson, David H.; Harris, Linda M.; Kutner, Jean S.; McFarren, Ann E.; Shad, Aziza T.

    2012-01-01

    Context Palliation in patient care is under-utilized in part because many patients have insufficient knowledge about this management option. Information technology can improve awareness by providing access to numerous sources of trustworthy information. Evidence Acquisition To estimate what a patient interested in palliation might find online, online resources were searched in July 2010, using terms relevant to palliation. PubMed was searched for publications relevant to discussed topics. Evidence Synthesis Search engines returned vast numbers of hits, and identifying trustworthy sites was difficult. Products judged as trustworthy were classified as information, decision tool, or extended interaction tool. Sites with useful educational material were relatively plentiful; decision guides and interactive tools were much rarer. Available consumer informatics did not address well some terminal illnesses, and some subpopulations such as children, nor was there sufficient attention to literacy levels or principles of instructional design. Online or published information about usage numbers, effectiveness, and cost/benefit considerations was scant. Many sectors, including commercial, government, healthcare, research, and wellness/advocacy groups, have created consumer informatics for palliation. Conclusions Online information about palliation is available, although identifying trustworthy sources can be problematic. General information sites are relatively plentiful, but more tools for decision making, and interaction would increase value of web resources. More attention to literacy levels, instructional principles, and needs of special populations would improve products. Research to measure usage of such tools, ability to influence behavior, and cost/benefit issues is needed. PMID:21521592

  10. Nurses' use of palliative care practices in the acute care setting.

    PubMed

    Bradley, E H; Cherlin, E; McCorkle, R; Fried, T R; Kasl, S V; Cicchetti, D V; Johnson-Hurzeler, R; Horwitz, S M

    2001-01-01

    This study examines the reported use of palliative care practices by nurses caring for terminally ill patients in the acute care setting. Randomly selected nurses (n = 180) from six randomly selected hospitals in Connecticut completed a self-administered questionnaire. Factors associated with use of palliative care practices were examined by using bivariate and multivariate analyses. Most nurses surveyed (88.5%) reported using palliative care practices when caring for their terminally ill patients. Factors associated with greater use included greater knowledge about hospice, having practiced nursing for less than 10 years, and having had hospice training in the past 5 years. A substantial proportion of nurses reported that they never discuss hospice (51.7 per cent of nurses) and prognosis (26.6 per cent of nurses) with their terminally ill patients. Educational preparation (bachelor's degree versus less education) was not associated with greater use of palliative care practices. Palliative care practices are commonly used by nurses in the acute care setting. However, many report having limited training and substantial gaps in knowledge about hospice among this group of nurses, suggesting greater attention to palliative care and hospice may be warranted in nursing educational programs. PMID:11211378

  11. 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…

  12. Palliative Care for Severely Affected Patients with Multiple Sclerosis: When and Why? Results of a Delphi Survey of Health Care Professionals

    PubMed Central

    Romotzky, Vanessa; Galushko, Maren; Golla, Heidrun; Voltz, Raymond

    2014-01-01

    Abstract Background: Patients severely affected by multiple sclerosis (MS) present with complex symptoms and needs requiring an interdisciplinary care approach. Objective: Analysis of when and why specialized palliative care integration would be beneficial via examining health care professionals' attitudes. Design: A two-round online Delphi study and expert workshop were undertaken and analyzed descriptively. Setting/Subjects: Following an extensive online search, 164 professionals with expertise in treating and caring for severely affected patients with MS were contacted. Professionals included neurologists, urologists, general practitioners, MS nurses, speech therapists, physiotherapists, psychologists, and palliative care physicians. Forty-six consented to participate: 33 of 46 (71.4%) and 15 of 33 (45.5%) experts responded in the first and second round, respectively. Results: Consensus was reached among all respondents (100%) defining the term “severely affected”: 78.8% and 86.7%, respectively, thought that specialized palliative care should begin once the disease has progressed (Expanded Disability Status Scale [EDSS]>6 and nursing care required). When the need exists for communication about disease progression (93.3%), psychological support (93.3%), relatives support (93.3%), and pain medication (86.7%) specialized palliative care should be consulted. Specialized palliative homecare was rated (93.3%) “very important.” The workshop documented the paucity of home visits and specialized MS care in nursing homes. Conclusions: Our results clearly identified specific areas in which palliative care will likely prove to be a valuable asset in the treatment course of MS. This information should serve clinicians, indicating when to consider palliative care services and help further reduce or eliminate uncertainty about how palliative care can be integrated in the course of MS. PMID:25068391

  13. 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. PMID:22294001

  14. A guide to wound managment in palliative care.

    PubMed

    Naylor, Wayne A

    2005-11-01

    Wound management in palliative patients is often a very challenging area of care. There are many unique issues that can combine to produce complicated wound management scenarios, including the types of wounds and wound symptoms most commonly affecting palliative care patients, as well as the presence of concurrent disease and associated treatment. Problems exist with the availability of suitable dressings and balancing life expectancy with the goals of wound care. A significant, and possibly under-recognized, issue is the emotional and social distress experienced by these patients, which can be directly attributed to their wound. These problems must all be recognized and addressed in order to manage wounds effectively in this patient population. This article aims to explore these issues and offer advice on the management of wound-related symptoms, with the ultimate goal of improving patients' quality of life. PMID:16471044

  15. Communication that heals: mindful communication practices from palliative care leaders.

    PubMed

    Omilion-Hodges, Leah M; Swords, Nathan M

    2016-01-01

    Though research has begun to highlight the centrality of communication in palliative care, studies have yet to focus on the use of mindful communication. Mindful communication is associated with increases in patient care and decreases in physician burnout. Through in-depth, semi-structured interviews the authors sought mindful communication practices from palliative care leaders in American Hospital Association Circle of Life award-wining units. Four key mindful communication practices emerged: Know your audience, ask questions, discard scripts, and recognize your role. The discussion articulates how key mindful communication practices may be used as a stage model, where key practices may be used individually or in concert, by sole practitioners or within interdisciplinary teams and by new and seasoned clinicians. Theoretical contributions and areas for future inquiry are also discussed. PMID:26360619

  16. Novel open-source electronic medical records system for palliative care in low-resource settings

    PubMed Central

    2013-01-01

    Background The need for palliative care in sub-Saharan Africa is staggering: this region shoulders over 67% of the global burden of HIV/AIDS and cancer. However, provisions for these essential services remain limited and poorly integrated with national health systems in most nations. Moreover, the evidence base for palliative care in the region remains scarce. This study chronicles the development and evaluation of DataPall, an open-source electronic medical records system that can be used to track patients, manage data, and generate reports for palliative care providers in these settings. DataPall was developed using design criteria encompassing both functional and technical objectives articulated by hospital leaders and palliative care staff at a leading palliative care center in Malawi. The database can be used with computers that run Windows XP SP 2 or newer, and does not require an internet connection for use. Subsequent to its development and implementation in two hospitals, DataPall was tested among both trained and untrained hospital staff populations on the basis of its usability with comparison to existing paper records systems as well as on the speed at which users could perform basic database functions. Additionally, all participants evaluated this program on a standard system usability scale. Results In a study of health professionals in a Malawian hospital, DataPall enabled palliative care providers to find patients’ appointments, on average, in less than half the time required to locate the same record in current paper records. Moreover, participants generated customizable reports documenting patient records and comprehensive reports on providers’ activities with little training necessary. Participants affirmed this ease of use on the system usability scale. Conclusions DataPall is a simple, effective electronic medical records system that can assist in developing an evidence base of clinical data for palliative care in low resource settings. The system is available at no cost, is specifically designed to chronicle care in the region, and is catered to meet the technical needs and user specifications of such facilities. PMID:23941694

  17. On resilience and acceptance in the transition to palliative care at the end of life.

    PubMed

    MacArtney, John I; Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia; Yates, Patsy M; Adams, Jon

    2015-05-01

    Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine's general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness. PMID:25121725

  18. Palliative Care among Heart Failure Patients in Primary Care: A Comparison to Cancer Patients Using English Family Practice Data

    PubMed Central

    Gadoud, Amy; Kane, Eleanor; Macleod, Una; Ansell, Pat; Oliver, Steven; Johnson, Miriam

    2014-01-01

    Introduction Patients with heart failure have a significant symptom burden and other palliative care needs often over a longer period than patients with cancer. It is acknowledged that this need may be unmet but by how much has not been quantified in primary care data at the population level. Methods This was the first use of Clinical Practice Research Datalink, the world's largest primary care database to explore recognition of the need for palliative care. Heart failure and cancer patients who had died in 2009 aged 18 or over and had at least one year of primary care records were identified. A palliative approach to care among patients with heart failure was compared to that among patients with cancer using entry onto a palliative care register as a marker for a palliative approach to care. Results Among patients with heart failure, 7% (234/3 122) were entered on the palliative care register compared to 48% (3 669/7 608) of cancer patients. Of heart failure patients on the palliative care register, 29% (69/234) were entered onto the register within a week of their death. Conclusions This confirms that the stark inequity in recognition of palliative care needs for people with heart failure in a large primary care dataset. We recommend a move away from prognosis based criteria for palliative care towards a patient centred approach, with assessment of and attention to palliative needs including advance care planning throughout the disease trajectory. PMID:25423169

  19. CareSearch: finding and evaluating Australia's missing palliative care literature

    PubMed Central

    Tieman, Jennifer J; Abernethy, Amy P; Fazekas, Belinda S; Currow, David C

    2005-01-01

    Background Palliative care is an evolving specialty with a growing evidence base. However, evidence is less accessible than it could be with a lower than average conversion of conference abstracts to articles in peer-reviewed journals and the need for more accessible tools to support evidence-based practice (EBP) in palliative care. The CareSearch project involved identifying, collecting and evaluating Australia's "grey" palliative care literature and identifying international published literature missing from the electronic indexing systems. The literature was then catalogued and made publicly available through the CareSearch website. Results To date over 2,500 items have been included in the CareSearch database and can be accessed and searched through a publicly available website. Nearly 2,000 items are conference abstracts and 178 are theses or government, organisational and planning documents. A further 410 items relate to articles from palliative journals that are not indexed on a major bibliographic database. The website also provides tools and facilities to support palliative care practice and research. Conclusion CareSearch is a new evidence resource for palliative practitioners, educators and researchers. The palliative community now has access to a more comprehensive literature base as well as a resource that supports the integration of knowledge into practice. This specialised data repository enables users to access information on the body of work that has shaped palliative care development and prevents the potential loss or duplication of research work. It also provides a template for other emerging disciplines to use in capturing their literature and evidence. PMID:16083513

  20. 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

  1. Palliative care in patients with severe multiple sclerosis: two case reports and a survey among German MS neurologists.

    PubMed

    Kümpfel, T; Hoffmann, L A; Pöllmann, W; Rieckmann, P; Zettl, U K; Kühnbach, R; Borasio, G D; Voltz, R

    2007-03-01

    Due to its chronic and fluctuating time course, multiple sclerosis (MS), thus far, has not been regarded as a focus of palliative care. However, sometimes we are confronted with severely affected MS patients, who suffer from complex medical, physical and psychosocial problems, which are not fully covered by the current health care services. We present two cases of severely affected MS patients we saw in our outpatient MS clinic, and who, we believe, are candidates for palliative care. The first patient, with primary chronic progressive (pcP) MS for many years (Expanded Disability Status Scale (EDSS): 8.0) presented with complex painful dysaesthesias and a depressive syndrome. He refused any treatment, and finally committed suicide with the help of a euthanasia group in Switzerland. The second patient was also severely affected by a secondary chronic progressive (scP) MS (EDSS: 9.0) and was finally admitted to our palliative care unit due to a complex pain syndrome associated with panic attacks and anxiety. She spent three weeks on the palliative care unit and her symptoms improved gradually after changing and optimising her pain medication. The patient was discharged with home care and is seen regularly on the palliative care unit. Additionally, as a first step, a questionnaire was sent to 53 German MS specialists regarding their general view on the needs for palliative care in MS. Our two cases and the results of the questionnaire demonstrated that MS patients and their caregivers are confronted with a variety of symptoms which are difficult to treat, and are a cause of great suffering for the patients, including ataxia, depression and fatigue. The data of the questionnaire also showed that neurologists usually do not deal with end-of-life care issues in MS.More research is needed to define the role of palliative care in MS and establish appropriate interventions to improve the quality of life in advanced stage MS patients and their relatives. PMID:17344259

  2. 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

  3. 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. PMID:25900977

  4. 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

  5. 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. PMID:23134278

  6. 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

  7. 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

  8. Palliative Care in the Pediatric ICU: Challenges and Opportunities for Family-Centered Practice

    PubMed Central

    DOORENBOS, ARDITH; LINDHORST, TARYN; STARKS, HELENE; AISENBERG, EUGENE; CURTIS, J. RANDALL; HAYS, ROSS

    2013-01-01

    The culture of pediatric intensive care units (PICUs) is focused on curative or life-prolonging treatments for seriously ill children. We present empirically-based approaches to family-centered palliative care that can be applied in PICUs. Palliative care in these settings is framed by larger issues related to the context of care in PICUs, the stressors experienced by families, and challenges to palliative care philosophy within this environment. Innovations from research on family-centered communication practices in adult ICU settings provide a framework for development of palliative care in PICUs and suggest avenues for social work support of critically ill children and their families. PMID:23194167

  9. [Palliative care in pediatrics, ethics and relations with the patient].

    PubMed

    Friedel, Marie

    2014-01-01

    The extension of the Belgian law on euthanasia to minors during the course of 2014 raises questions with regard to the needs of children in the context of paediatric palliative care. These needs concern essentially the focus given to the interrelations between the child, their family and the caregiving team as well as to the relief of the physical, psychological and spiritual pain. Ethical guidelines help to fuel the discussions surrounding professional practices. PMID:25608370

  10. 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.

  11. Palliative care and quality of life in neuro-oncology

    PubMed Central

    Mummudi, Naveen

    2014-01-01

    Health-related quality of life has become an important end point in modern day clinical practice in patients with primary or secondary brain tumors. Patients have unique symptoms and problems from diagnosis till death, which require interventions that are multidisciplinary in nature. Here, we review and summarize the various key issues in palliative care, quality of life and end of life in patients with brain tumors, with the focus on primary gliomas. PMID:25165570

  12. 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.

  13. Giving Voice to Patients' and Family Caregivers' Needs in Chronic Heart Failure: Implications for Palliative Care Programs

    PubMed Central

    Nowels, Carolyn T.; Retrum, Jessica H.; Allen, Larry A.; Shakar, Simon; Hutt, Evelyn; Heyborne, Theresa; Main, Deborah S.; Kutner, Jean S.

    2011-01-01

    Abstract Background The American College of Cardiology Foundation/American Heart Association (ACC/AHA) Guidelines for the Management of Heart Failure recommend palliative care in the context of Stage D HF or at the end of life. Previous studies related to heart failure (HF) palliative care provide useful information about patients' experiences, but they do not provide concrete guidance for what palliative care needs are most important and how a palliative care program should be structured. Objectives Describe HF patients' and their family caregivers' major concerns and needs. Explore whether, how, and when palliative care would be useful to them. Design and participants Qualitative study using in-depth interviews of 33 adult outpatients with symptomatic HF identified using purposive sampling and 20 of their family caregivers. Approach Interviews were transcribed verbatim and analyzed using the constant comparative method. Key results Overall, patients and caregivers desired early support adjusting to the limitations and future course of illness, relief of a number of diverse symptoms, and the involvement of family caregivers using a team approach. A diverse group of participants desired these elements of palliative care early in illness, concurrent with their disease-specific care, coordinated by a provider who understood their heart condition and knew them well. Some diverging needs and preferences were found based on health status and age. Conclusions HF patients and their family caregivers supported early integration of palliative care services, particularly psychosocial support and symptom control, using a collaborative team approach. Future research should test the feasibility and effectiveness of integrating such a program into routine HF care. PMID:22107107

  14. Ethical issues and palliative care in the cardiovascular intensive care unit.

    PubMed

    Swetz, Keith M; Mansel, J Keith

    2013-11-01

    Medical advances over the past 50 years have helped countless patients with advanced cardiac disease or who are critically ill in the intensive care unit (ICU), but have added to the ethical complexity of the care provided by clinicians, particularly at the end of life. Palliative care has the primary aim of improving symptom burden, quality of life, and the congruence of the medical plan with a patient's goals of care. This article explores ethical issues encountered in the cardiac ICU, discusses key analyses of these issues, and addresses how palliative care might assist medical teams in approaching these challenges. PMID:24188227

  15. Home palliative care as a cost-saving alternative: evidence from Catalonia.

    PubMed

    Serra-Prat, M; Gallo, P; Picaza, J M

    2001-07-01

    The aim of this study was to provide a comparative assessment of the health care resources consumed during the final month of life of patients undergoing palliative treatment and who died from cancer in the town of Mataró, Spain, in 1998, with respect to whether they benefited from home care teams or not. Relevant differences in the use of health care resources were found between the groups. Patients in the standard care group presented more hospital care admissions and longer length of stay, higher use of emergency and outpatient visits, and greater use of palliative care units within nursing homes than patients in the home care group. The monetary quantification of the use of the above-mentioned resources showed a 71% increase in the cost per patient in the standard care when compared to home care. According to the results of this study, home care teams for terminal cancer patients allow for savings to the health care system. A series of policy making and health services research implications are discussed. PMID:12054144

  16. Quality of Palliative Care for Patients With Advanced Cancer in a Community Consortium

    PubMed Central

    Kamal, Arif H.; Nipp, Ryan D.; Bull, Janet H.; Stinson, Charles S.; Lowery, Ashlei W.; Nicolla, Jonathan M.; Abernethy, Amy P.

    2015-01-01

    Background Measuring quality of care delivery is essential to palliative care program growth and sustainability. We formed the Carolinas Consortium for Palliative Care and collected a quality data registry to monitor our practice and inform quality improvement efforts. Measures We analyzed all palliative care consultations in patients with cancer in our quality registry from March 2008 through October 2011 using 18 palliative care quality measures. Descriptive metric adherence was calculated after analyzing the relevant population for measurement. Intervention We used a paper-based, prospective method to monitor adherence for quality measures in a community-based palliative care consortium. Outcomes We demonstrate that measures evaluating process assessment (range 63-100%), as opposed to interventions (range 3-17%), are better documented. Conclusions/Lessons Learned Analyzing data on quality is feasible and valuable in community-based palliative care. Overall, processes to collect data on quality using non-technology methods may underestimate true adherence to quality measures. PMID:25220048

  17. 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. PMID:26431077

  18. Attitudes and Beliefs Toward Supportive and Palliative Care Referral Among Hematologic and Solid Tumor Oncology Specialists

    PubMed Central

    Park, Minjeong; Liu, Diane; Reddy, Akhila; Dalal, Shalini; Bruera, Eduardo

    2015-01-01

    Background. Palliative care (PC) referrals are often delayed for patients with hematologic malignancies. We examined the differences in attitudes and beliefs toward PC referral between hematologic and solid tumor specialists and how their perception changed with use of the service name “supportive care” (SC). Materials and Methods. We randomly surveyed 120 hematologic and 120 solid tumor oncology specialists at our tertiary care cancer center to examine their attitudes and beliefs toward PC and SC referral. Results. Of the 240 specialists, 182 (76%) responded. Compared with solid tumor specialists, hematologic specialists were less likely to report that they would refer symptomatic patients with newly diagnosed cancer to PC (solid tumor, 43% vs. hematology, 21%; p = .002). A significantly greater proportion of specialists expressed that they would refer a patient with newly diagnosed cancer to SC than PC (solid tumor specialists: SC, 81% vs. PC, 43%; p < .001; hematology specialists: SC, 66% vs. PC, 21%; p < .001). The specialists perceived that PC was more likely than SC to be a barrier for referral (PC, 36% vs. SC, 3%; p < .001), to be synonymous with hospice (PC, 53% vs. SC, 6%; p < .001), to decrease hope (PC, 58% vs. SC, 8%; p < .001), and to be less appropriate for treatment of chemotherapy side effects (PC, 64% vs. SC, 19%; p < .001). On multivariate analysis, female clinicians (odds ratio [OR], 4.5; 95% confidence interval [CI], 1.3-15.2; p = .02) and the perception that PC is a barrier for referral (OR, 3.0; 95% CI, 1.2-7.6; p = .02) were associated with PC referral if the service name “SC” was used. Conclusion. Hematologic specialists were less likely to refer patients early in the disease trajectory and were conducive to referral with the service name SC instead of PC. Implications for Practice: The present survey of oncology specialists found that hematologic specialists were less likely than solid tumor specialists to report that they would refer symptomatic patients with newly diagnosed cancer to palliative care. However, both groups were significantly more willing to refer patients early in the disease trajectory if the service name “supportive care” were used instead of “palliative care.” These findings suggest that rebranding might help to overcome the stigma associated with palliative care and improve patient access to palliative care services. PMID:26417037

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

    PubMed Central

    Kalman, Jill; Goldstein, Nathan E.

    2014-01-01

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

  20. 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. PMID:25855211

  1. Establishing a culturally sensitive palliative care program in rural Alaska Native American communities.

    PubMed

    DeCourtney, Christine A; Jones, Kristina; Merriman, Melanie P; Heavener, Nina; Branch, P Kay

    2003-06-01

    End-of-life programs that provide an option for patients to die at home are available in most U.S. communities. However, Alaska Natives living in remote Alaska villages often die alone in hospitals and nursing homes hundreds of miles away from home. The Bristol Bay Area Health Corporation (BBAHC), a tribal organization, is the sole provider of comprehensive primary care services to 34 Alaska Native villages located within a 46,000 square mile area in southwest Alaska. The closest tertiary care hospital is 329 air miles away in Anchorage. Because of the high cost of, and difficulties encountered in trying to deliver end-of-life care services to remote communities, a village-focused, culturally sensitive, volunteer and primary care program combined with a regionally based physician and home health nurse to deliver multi-disciplinary palliative care was developed. The Helping Hands Program blends cultural practices with contemporary palliative care medicine to allow Alaska Natives and others living in remote communities to be cared for at home through the end of life. Since the program was implemented in 1999, the percentage of home deaths for selected causes has changed from 33% in 1997 to 77% in 2001. The Anchorage-based Alaska Native Tribal Health Consortium (ANTHC) and the Alaska Native Medical Center (ANMC) have recognized the importance and success of the BBAHC program and are investigating expanding the program to other parts of Alaska. Centralizing the program in Anchorage will allow staff trained in palliative care to travel to regional Alaska Native hospitals to help train health care professionals. PMID:14509499

  2. 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)

  3. [Treatment of constipation in the palliative care phase].

    PubMed

    de Groot, Jan Willem B; Peters, Frans T M; Reyners, Anna K L

    2010-01-01

    Constipation is a common problem with a considerable negative impact on quality of life in patients who receive palliative care. Over 35% of patients with heart failure, chronic obstructive pulmonary disease or cancer have constipation. In the palliative phase constipation often has multiple causes. Treatment of constipation consists of both medical treatment with laxatives and non-medical treatment. A specific recommendation for the use of laxatives cannot be made because of the lack of comparative trials. The choice of what laxative to use can only be made on the basis of clinical experience, mechanism of action, personal preference of the patient and costs. Prophylactic use of laxatives is indicated to prevent constipation when initiating constipation inducing medication such as opioids. In treatment-resistant constipation prucalopride, colchicine or misoprostol may be effective. Opioid-antagonists such as naloxone and methylnaltrexone are effective in patients with persistent opioid-induced constipation despite the use of laxatives. PMID:21176258

  4. Methods for handling missing data in palliative care research.

    PubMed

    Fielding, S; Fayers, P M; Loge, J H; Jordhøy, M S; Kaasa, S

    2006-12-01

    Missing data is a common problem in palliative care research due to the special characteristics (deteriorating condition, fatigue and cachexia) of the population. Using data from a palliative study, we illustrate the problems that missing data can cause and show some approaches for dealing with it. Reasons for missing data and ways to deal with missing data (including complete case analysis, imputation and modelling procedures) are explored. Possible mechanisms behind the missing data are: missing completely at random, missing at random or missing not at random. In the example study, data are shown to be missing at random. Imputation of missing data is commonly used (including last value carried forward, regression procedures and simple mean). Imputation affects subsequent summary statistics and analyses, and can have a substantial impact on estimated group means and standard deviations. The choice of imputation method should be carried out with caution and the effects reported. PMID:17148533

  5. Poverty and pediatric palliative care: what can we do?

    PubMed

    Beaune, Laura; Leavens, Anne; Muskat, Barbara; Ford-Jones, Lee; Rapoport, Adam; Zlotnik Shaul, Randi; Morinis, Julia; Chapman, Lee Ann

    2014-01-01

    It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the socioeconomic needs of families they care for. This article describes a mixed-methods study examining the content validity and utility for health care providers of a poverty screening tool and companion resource guide for the pediatric palliative care population. The study found high relevance and validity of the tool. Significant barriers to implementing the screening tool in clinical practice were described by participants, including: concerns regarding time required, roles and responsibilities, and discomfort in asking about income. Implications for practice and suggestions for improving the tool are discussed. Screening and attention to the social determinants of health lie within the scope of practice of all health care providers. Social workers can play a leadership role in this work. PMID:24835385

  6. Using Technology to Create a More Humanistic Approach to Integrating Palliative Care into the Intensive Care Unit.

    PubMed

    Cox, Christopher E; Curtis, J Randall

    2016-02-01

    A decade ago, the major obstacles to integration of palliative care into the intensive care unit (ICU) were the limited number of providers trained in palliative care, an immature evidence base, and a lack of appreciation for the importance of palliative care in the ICU. In 2016, the palliative care workforce has expanded markedly and there is growing appreciation of the benefits of palliative care, whether provided by a generalist (intensivist, nurse, social worker) or palliative care specialist. However, there is evidence that the quality of ICU-based palliative care is often suboptimal. A major barrier to more broadly addressing this quality problem is the lack of scalable ICU-based palliative care models that use technology to deliver efficient, collaborative palliative care in the ICU setting to the right patient at the right time. To address these challenges, we first review strengths and limitations of current care models as the basis for our novel conceptual framework that uses the electronic health record as a platform on which external innovations can be built, including: (1) screening for patients at risk for poor outcomes, (2) integrating patient- and family-reported needs, (3) personalizing care, and (4) directing generalist versus specialist triage algorithms. In the approaches considered, we describe current challenges and propose specific solutions that use technology to improve the quality of the human interaction in a stressful, complex environment. PMID:26599829

  7. Communications by professionals in palliative care.

    PubMed

    Schapira, Lidia

    2015-05-01

    In this article, the author first examines the ageist bias that is prevalent in clinics today. The author then reviews the basic communication principles and strategies that can help clinicians make their conversations with patients more focused and meaningful, thereby preparing patients and their family caregivers to make decisions in a crisis and to engage in planning for end-of-life care as early and intensively as possible. PMID:25920058

  8. Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals

    PubMed Central

    Worth, Allison; Boyd, Kirsty; Kendall, Marilyn; Heaney, David; Macleod, Una; Cormie, Paul; Hockley, Jo; Murray, Scott

    2006-01-01

    Background New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important. Aim To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers. Design of study Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews. Setting Urban, semi-urban and rural communities in three areas of Scotland. Method Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals. Results Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services. Conclusions Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups. PMID:16438809

  9. 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. PMID:22771130

  10. [Taking an Active Part in a Palliative Care Unit as an Anesthesiologist].

    PubMed

    Nakatani, Toshihiko

    2016-03-01

    Palliative care prevents and relieves total pain of patients and their families and improves their quality of life. The author describes the work of anesthesiologists in palliative care unit as ward staffs. The need for palliative care units is increasing and new palliative care units are being established throughout Japan. Anesthesiologists are involved in anesthesia, pain management intensive care, emergency medicine and palliative care. The anesthesiologists in palliative care are involved in use of opioid and nerve block for treating physical pain. Sedatives such as minor tranquilizer to sedate a patient under regional anesthesia are used by anesthesiologists in operating rooms. Anesthesiologists manage the patients who need to be sedated for relief of refractory sufferings by sedative drugs in palliative care unit It is important that we anesthesiologists walk alongside the patients when they need to be heard in the end of life stage. We expect that it is a key point to palliate spiritual pain of the patients. I hope many young anesthesiologists serve as capable members in the palliative care unit in the future. PMID:27097501

  11. 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

    2015-01-01

    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. PMID:26766856

  12. Does palliative care improve quality? A survey of bereaved family members.

    PubMed

    Gelfman, Laura P; Meier, Diane E; Morrison, R Sean

    2008-07-01

    Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S. hospitals, the impact of hospital palliative care consultation programs on the quality of care received by family members is not well understood. We conducted prospective quantitative telephonic interviews of family members of patients who died at Mount Sinai Medical Center between April and December 2005 using the validated "After-Death Bereaved Family Member Interview," to assess quality of medical care at the end of life. Multivariable techniques were used to compare family satisfaction of palliative care patients vs. usual care patients controlling for age, race (white vs. nonwhite), diagnosis (cancer vs. noncancer), socioeconomic status (Medicaid vs. non-Medicaid), and functional status (number of dependent activities of daily living). One hundred ninety eligible subjects were contacted and successful interviews were completed with 149 (78.4%) family members (54 palliative care and 95 usual care patients). Palliative care showed benefit, with 65% of palliative care patients' family members reporting that their emotional or spiritual needs were met, as compared to 35% of usual care patients' family members (P=0.004). Sixty-seven percent of palliative care patients' family members reported confidence in one or more self-efficacy domains, as compared to 44% of usual care patients' family members (P=0.03). Our study shows that palliative care consultation is associated with improved satisfaction, with attention to family and enhanced self-efficacy. Palliative care offers a unique approach by integrating the needs of the family into the care of the patient. PMID:18411019

  13. 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…

  14. 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

  15. What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators

    PubMed Central

    Mistry, Bina; Bainbridge, Daryl; Bryant, Deanna; Tan Toyofuku, Sue; Seow, Hsien

    2015-01-01

    Objectives There has been little research conducted to understand the essential meaning of quality, community-based, end-of-life (EOL) care, despite the expansion of these services. The purpose of this study was to define what matters most for EOL care from the perspective of a diverse range of palliative care providers in the community who have daily encounters with death and dying. Methods We used interviews to explore the perceptions of providers and administrators from 14 specialised palliative care teams in Ontario, Canada. Participants were prompted with the question ‘What matters most for EOL care?’ Responses were analysed using a phenomenological approach to derive themes depicting the universal essence of EOL care. Results Data from 107 respondents were obtained and analysed, from which 40 formulated concepts emerged; these were further grouped into 9 themes. Of the respondents, 39% were nurses, 19% physicians, 27% were supervisors or executives and 15% other. The most predominate concept was that Patient's Wishes are Fulfilled, cited by almost half the respondents. The most prominent themes were Addressing the Non-physical Needs, Healthcare Teams’ Nature of Palliative Care Delivery, Patient Wishes are Honoured, Addressing the Physical Needs, Preparing for and Accepting Death, Communication and Relationship Development, and Involving and Supporting the Family. Conclusions 9 critical domains of EOL care evolved from the interviews, indicating that quality EOL care extends beyond managing physical pain, but includes a holistic perspective of care, a healthcare team dedicated to the EOL journey and a patient-centred pathway. Tailoring the provision of care to consider these important elements plays a critical role in supporting a positive EOL experience for patients and families. PMID:26124510

  16. Variant Creutzfeldt-Jakob disease: need for mental health and palliative care team collaboration.

    PubMed

    de Vries, Kay; Sque, Margaret; Bryan, Karen; Abu-Saad, Huda

    2003-12-01

    People with a dementia syndrome and a superimposed terminal illness are increasingly being referred to palliative care services. Creutzfeldt-Jakob disease (CJD) is a dementia syndrome in the early stages of which people experience a variety of psychological symptoms that may lead to them being admitted to psychiatric services. People with CJD have died in psychiatric units. There is clearly a need for collaboration between mental health and palliative care services in providing care for people with CJD and other dementia syndromes. An inductive qualitative study of one case of variant CJD (vCJD) was carried out to explore issues that were raised in providing care for a young person with the disease who had died in a hospice unit. The study, which was a pilot for a larger study, highlights some of the complexities of providing care for people with an end-stage dementia and identifies the need for the development of education initiatives to increase knowledge and understanding of the end-of-life needs of people with CJD and other dementia syndromes, and their families. PMID:14765007

  17. Geriatric Palliative Care in Long-Term Care Settings with a Focus on Nursing Homes

    PubMed Central

    Carpenter, Joan G.

    2013-01-01

    Abstract Almost 1.7 million older Americans live in nursing homes, representing a large proportion of the frailest, most vulnerable elders needing long-term care. In the future, increasing numbers of older adults are expected to spend time and to die in nursing homes. Thus, understanding and addressing the palliative care needs of this population are critical. The goals of this paper are to describe briefly the current state of knowledge about palliative care needs, processes, and outcomes for nursing home residents; identify gaps in this knowledge; and propose priorities for future research in this area. PMID:23984636

  18. 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. PMID:25644909

  19. Clinician Roles in Early Integrated Palliative Care for Patients with Advanced Cancer: A Qualitative Study

    PubMed Central

    Park, Elyse R.; Greer, Joseph A.; Jackson, Vicki A.; Jacobsen, Juliet C.; Gallagher, Emily R.; Temel, Jennifer S.

    2014-01-01

    Abstract Background: Early palliative care provides better quality of life, increased prognostic awareness, and even improved survival for patients with advanced cancer but how the integrated care model achieves these outcomes has not been completely explained. Methods: To better understand the clinical approach to early outpatient care from the clinicians' perspective, we conducted focus groups with the palliative care clinicians who had participated in a randomized trial of early palliative care for metastatic lung cancer. Results: Clinicians described their role in providing early palliative care as having three distinct roles in the outpatient setting: (1) managing symptoms to improve functional status and as a bridge to other issues; (2) engaging patients in emotional work to facilitate coping, accepting, and planning; and (3) interpreting the oncologist for the patient and the patient for the oncologist. Conclusions: These data lay the foundation for developing training programs for clinicians in early integrated palliative care. PMID:25390467

  20. Barriers and approaches to the successful integration of palliative care and oncology practice.

    PubMed

    Von Roenn, Jamie H; Voltz, Raymond; Serrie, Alain

    2013-03-01

    As management of patients with cancer is evolving, an increased focus is being placed on individualized patient-centered care. Early integration of palliative care into the overall management of patients with cancer can help achieve this paradigm shift. Despite recommendations for earlier integration of palliative care by national and international societies, several barriers remain to achieving this goal. Survey studies have indicated a significant need for increased education regarding palliative care for both medical undergraduates and postgraduate physicians. Key issues in the early integration of palliative care include relationship-building across multiple health systems and specialties; development of a standardized definition of palliative care, making clear that it should be fully integrated with cancer-directed therapy; identification of physician and nonphysician champions; standardization of tools for patient assessment; education programs designed to meet the needs of health care professionals; and ongoing evaluation to assess program benefits and limitations. PMID:23520181

  1. Using national health policies to improve access to palliative care medications in the community.

    PubMed

    Rowett, Debra; Ravenscroft, Peter J; Hardy, Janet; Currow, David C

    2009-03-01

    Access to affordable priority palliative care medicines needs to be informed by good clinical data from well-conducted clinical trials designed to address efficacy, cost-effectiveness, and safety. Availability of priority palliative care symptom control medicines improves the provision of palliation in the place of patient's choice including the community. Within Australia, a National Medicines Policy and a Palliative Care Strategy endorsed by Federal and State and Territory health ministers have facilitated a process to improve the evidence for palliative clinical practice and, through this, improve community availability of key medications for people at the end of life. The initiative, coordinated by a working party under government auspices, has brought together medicine regulators, the pharmaceutical industry, government, policy makers, and clinicians. The brief was to improve availability of key palliative care medications within the current national drug regulatory and funding frameworks. The results to date include: a palliative care section within the Pharmaceutical Benefits Scheme generating the first ever patient-defined section; medicines not previously listed now available; commitment of AU$9.46 M for a national multisite collaborative clinical study network to improve the evidence for clinical interventions in the palliative care setting through systematic investigation with rigorous Phase III and IV studies to inform registration and subsidy applications; and establishing a national Communication Network of the Palliative Care Medications Working Group for the health workforce and community to improve the quality use where improved access has been achieved. PMID:18722748

  2. 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

  3. The Spirit of "Ubuntu" in Children's Palliative Care.

    PubMed

    Marston, Joan M

    2015-09-01

    The concept of "ubuntu," a Nguni word, is found in many southern African cultures and means that we are part of all humanity and we are who we are through our interconnectedness with others. Children with life-limiting conditions often become isolated and take on a new identity in the eyes of others, linked to their illness and treatment. Terms that are used can dehumanize the child. The concept of ubuntu can help the child, the family, and the community to ensure the child remains connected to society. Programs providing palliative care for children often say they feel isolated; ubuntu principles are relevant to effective network development. PMID:26166185

  4. Performance and palliative care: a drama module for medical students.

    PubMed

    Jeffrey, Ewan James; Goddard, Jen; Jeffrey, David

    2012-12-01

    This paper describes an innovative 2 weeks module for medical students facilitated by drama educators and a palliative medicine doctor. The module incorporates drama, end-of-life care, teamwork and reflective practice. The module contents, practical aspects of drama teaching and learning outcomes are discussed. Various themes emerged from a study of Harold Pinter's play, The Caretaker, which were relevant to clinical practice: silence, power, communication, uncertainty and unanswered questions. Drama teaching may be one way of enhancing students' confidence, increasing self- awareness, developing ethical thinking and fostering teamworking. PMID:22977064

  5. 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

  6. 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

  7. 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

  8. [Research in palliative care; is something better than nothing?].

    PubMed

    van Delden, J J M Hans

    2012-01-01

    How strictly should we apply the rules of good clinical research, when the research in question is performed with terminally ill patients? Recently, a retrospective study into the effectiveness of radiotherapy for sialorrhoea in patients with a degenerative disease, such as amyotrophic lateral sclerosis, was published in the Nederlands Tijdschrift voor Geneeskunde(Dutch Journal of Medicine). This commentary defends the position that in palliative care sometimes having weak scientific evidence is better than having nothing. Here, the need of the patient and the intention of the physician are 2 ethically relevant issues that need to be taken into account. If there is at least some evidence to believe an intervention is beneficial for the patient, this is a strong reason to provide it. And if such intervention can only be studied in a methodologically suboptimal way, then it is better to have that information, albeit not perfect, than none at all. This is not a justification of weak studies as such. If possible, palliative care should be as evidence-based as all other types of medical care. However, when the circumstances make methodologically perfect research impossible, it is better to act on weak evidence than on none at all. PMID:22357311

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

    PubMed Central

    Tan, Heather M; O'Connor, Margaret M; Miles, Gail; Klein, Britt; Schattner, Peter

    2009-01-01

    Background Primary health care providers play a dominant role in the provision of palliative care (PC) in Australia but many gaps in after hours service remain. In some rural areas only 19% of people receiving palliative care achieve their goal of dying at home. This study, which builds on an earlier qualitative phase of the project, investigates the gaps in care from the perspective of general practitioners (GPs) and PC nurses. Methods Questionnaires, developed from the outcomes of the earlier phase, and containing both structured and open ended questions, were distributed through Divisions of General Practice (1 urban, 1 rural, 1 mixed) to GPs (n = 524) and through a special interest group to palliative care nurses (n = 122) in both rural and urban areas. Results Questionnaires were returned by 114 GPs (22%) and 52 nurses (43%). The majority of GPs were associated with a practice which provided some after hours services but PC was not a strong focus for most. This was reflected in low levels of PC training, limited awareness of the existence of after hours triage services in their area, and of the availability of Enhanced Primary Care (EPC) Medicare items for care planning for palliative patients. However, more than half of both nurses and GPs were aware of accessible PC resources. Factors such as poor communication and limited availability of after hours services were identified the as most likely to impact negatively on service provision. Strategies considered most likely to improve after hours services were individual patient protocols, palliative care trained respite carers and regular multidisciplinary meetings that included the GP. Conclusion While some of the identified gaps can only be met by long term funding and policy change, educational tools for use in training programs in PC for health professionals, which focus on the utilisation of EPC Medicare items in palliative care planning, the development of advance care plans and good communication between members of multidisciplinary teams, which include the GP, may enhance after hours service provision for patients receiving palliative care at home. The role of locums in after PC is an area for further research PMID:19751527

  10. Paediatric palliative care by video consultation at home: a cost minimisation analysis

    PubMed Central

    2014-01-01

    Background In the vast state of Queensland, Australia, access to specialist paediatric services are only available in the capital city of Brisbane, and are limited in regional and remote locations. During home-based palliative care, it is not always desirable or practical to move a patient to attend appointments, and so access to care may be even further limited. To address these problems, at the Royal Children’s Hospital (RCH) in Brisbane, a Home Telehealth Program (HTP) has been successfully established to provide palliative care consultations to families throughout Queensland. Methods A cost minimisation analysis was undertaken to compare the actual costs of the HTP consultations, with the estimated potential costs associated with face-to face-consultations occurring by either i) hospital based consultations in the outpatients department at the RCH, or ii) home visits from the Paediatric Palliative Care Service. The analysis was undertaken from the perspective of the Children’s Health Service. The analysis was based on data from 95 home video consultations which occurred over a two year period, and included costs associated with projected: clinician time and travel; costs reimbursed to families for travel through the Patients Travel Subsidy (PTS) scheme; hospital outpatient clinic costs, project co-ordination and equipment and infrastructure costs. The mean costs per consultation were calculated for each approach. Results Air travel (n = 24) significantly affected the results. The mean cost of the HTP intervention was $294 and required no travel. The estimated mean cost per consultation in the hospital outpatient department was $748. The mean cost of home visits per consultation was $1214. Video consultation in the home is the most economical method of providing a consultation. The largest costs avoided to the health service are those associated with clinician time required for travel and the PTS scheme. Conclusion While face-to-face consultations are the gold standard of care, for families located at a distance from the hospital, video consultation in the home presents an effective and cost efficient method to deliver a consultation. Additionally video consultation in the home ensures equity of access to services and minimum disruption to hospital based palliative care teams. PMID:25069399

  11. Determinants of home death in palliative home care: using the interRAI palliative care to assess end-of-life care.

    PubMed

    Brink, Peter; Frise Smith, Trevor

    2008-01-01

    Many terminally ill patients are given the choice to die at home. This study identified determinants of home death among patients receiving palliative home care. Health information was collected using the interRAI palliative care assessment tool. The sample included health information from 536 patients receiving home health care from one community care access centre in Ontario, Canada. Patients who died at home were more likely to be functionally impaired and less likely to live alone. The patients' wish to die at home and the family's ability to cope were strong determinants of home death. This study suggests that the presence of a supportive family that is able to work with the health care team to implement a plan of care is important to the patients' ability to die at home. This study highlights the need to treat the patient and the caregiver(s) as a unit of care. PMID:18550781

  12. Wish fulfillment: palliative care and end-of-life intervention.

    PubMed

    Ewing, Bonnie

    2009-01-01

    Children with life-threatening illnesses are subjected to numerous treatments and procedures. They endure enormous physical and emotional pain as attempts are made to prolong their lives. These children require sensitive care by pediatric nurses who recognize the importance of the child's need to grow and become. A way to satisfy the child's desire is the fulfillment of a special wish, which provides a sense of future, a way to be something more. The fulfillment of the wish is a palliative care and end-of-life intervention that can ease suffering and sorrow for the child and family. It is essential to understand, however, that the child has complex emotions as the wish is fulfilled. The provision of care must, therefore, include psychological support, empowerment, and communication with the child and family to assist with life-threatening illnesses as they experience suffering within the tension of living and dying. PMID:19472670

  13. Integration of footprints information systems in palliative care: the case of Medical Center of Central Georgia.

    PubMed

    Tsavatewa, Christopher; Musa, Philip F; Ramsingh, Isaac

    2012-06-01

    Healthcare in America continues to be of paramount importance, and one of the most highly debated public policy issues of our time. With annual expenditures already exceeding $2.4 trillion, and yielding less than optimal results, it stands to reason that we must turn to promising tools and solutions, such as information technology (IT), to improve service efficiency and quality of care. Presidential addresses in 2004 and 2008 laid out an agenda, framework, and timeline for national health information technology investment and development. A national initiative was long overdue. This report we show that advancements in both medical technologies and information systems can be capitalized upon, hence extending information systems usage beyond data collection to include administrative and decision support, care plan development, quality improvement, etc. In this paper we focus on healthcare services for palliative patients. We present the development and preliminary accounts of a successful initiative in the Medical Center of Central Georgia where footprints information technology was modified and integrated into the hospital's palliative care service and existing EMR systems. The project provides evidence that there are a plethora of areas in healthcare in which innovative application of information systems could significantly enhance the care delivered to loved ones, and improve operations at the same time.. PMID:21057887

  14. 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.

  15. 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 palliative care practice. PMID:25902263

  16. The perspectives on including palliative care in the Indian undergraduate physiotherapy curriculum.

    PubMed

    Veqar, Zubia

    2013-04-01

    According to the guidelines which were published by WHO in 2008, palliative care has been defined as "An approach that improves the quality of life of the patients and their families who face the problems which are associated with life-threatening illnesses, through the prevention and relief of suffering by means of an early identification, an impeccable assessment and the treatment of pain and other problems, physical, psychosocial and spiritual". The intervention which is provided as a part of the palliative care has to be provided by health professionals who strictly work as a part of multidisciplinary team and have been specifically trained to an optimal level of competency in the field. The impairment of the physical function and pain are two key problem areas in palliative care, which a physiotherapist deals with. Is a physiotherapist who is trained in India, trained to work as an efficient member of the team in this field? THIS ARTICLE DEALS WITH THE FOLLOWING: What is palliative care and what is its importance?A multidisciplinary approach to palliative careThe scenario of palliative care in IndiaThe role of physiotherapy in palliative care.The current scenario of physiotherapy education vis a vis palliative care. PMID:23730677

  17. 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…

  18. 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)

  19. 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…

  20. Methodological and structural challenges in palliative care research: how have we fared in the last decades?

    PubMed

    Kaasa, Stein; Hjermstad, Marianne Jensen; Loge, Jon Hvard

    2006-12-01

    The heterogeneity of the palliative care population represents challenges to research methodology, including study design, informed consent (and ethical issues in general), assessment and classification of symptoms and signs, as well as practical issues in the clinic. The aim of this report is to describe and examine the status of palliative care research in Europe by means of a survey and a literature review. Only one European country, the UK, has taken a national initiative to stimulate and promote palliative care research through the supportive and palliative care collaboratives (SUPAC) in 2005. There are few European research groups in palliative care reaching a critical size, several countries do not have academic chairs in palliative care, and there is no clear trend that chairs are emerging in general. There is little public funding for palliative care research. Palliative care researchers need to compete on the 'open market' or rely on private foundations. There has been a steady increase in the number of abstracts for presentation at the EAPC Research Forums, from 200 in 2000, to 480 in 2006. The literature review indicated that the majority of publications are surveys and descriptive/observational studies, and few randomised, controlled, studies were published. In conclusion, the quantity of research seems to be steadily increasing. There may be a need for larger multi-centre studies, and in order to perform such studies, national and international structures, encompassing research above the critical size, with a multi-disciplinary background including both basic scientists and clinicians is required. PMID:17148527

  1. Palliative care coding practices in Canada since the introduction of guidelines and the HSMR indicator

    PubMed Central

    Fekri, Omid; Amuah, Joseph Emmanuel; Herasimovich, Viachaslau; Chaudhary, Zeerak; Leeb, Kira; Gurevich, Yana

    2015-01-01

    Objectives This study examines palliative care (PC) coding practices since the introduction of a national coding standard and assesses a potential association with hospital standardised mortality ratio (HSMR) results. Setting Acute-care hospitals in Canada. Participants ∼16 million hospital discharges recorded in Canadian Institute for Health Information (CIHI)'s Discharge Abstract Database from April 2006 to March 2013. Primary and secondary outcome measures In-hospital mortality, patient characteristics and service utilisation among all hospitalisations, HSMR cases and palliative patients. Methods We assessed all separations in the Discharge Abstract Database between fiscal years 2006–2007 and 2012–2013 for PC cases at national, provincial and facility levels. In-hospital mortality was measured among all hospitalisations (including HSMR cases) and palliative patients. We calculated a variant HSMR-PC that included PC cases. Results There was an increase in the frequency of PC coding over the study period (from 0.78% to 1.12% of all separations), and year-over-year improvement in adherence to PC coding guidelines. Characteristics and resource utilisation of PC patients remained stable within provinces. Crude mortality among HSMR cases declined from 8.7% to 7.3%. National HSMR declined by 22% during the study period, compared with a 17% decline in HSMR-PC. Provincial results for HSMR-PC are not significantly different from regular HSMR calculation. Conclusions The introduction of a national coding standard resulted in increased identification of palliative patients and services. Aside from PC coding practices, we note numerous independent drivers of improving HSMR results, notably, a significant reduction of in-hospital mortality, and increase in admissions accompanied by a greater number of coded comorbidities. While PC impacts the HSMR indicator, its influence remains modest. PMID:26597865

  2. 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

    Patients attended by palliative care teams: are they always comparable populations? To answer this question we have compared the basic epidemiological characteristics of patients attended by home palliative care teams (HPCT) in two autonomous regions of Spain. We carried out a coordinated analytical, observational and prospective study in two Spanish autonomous regions: Aragon and Catalonia. Data were kept during each home care visit according to patients' needs. Inclusion criteria were: advanced cancer, over 18 years old and first contact with a HPCT. The recruitment period was 6 months. Variables included were: Survival time (days), age, sex, primary disease and extension, place of residence. Functional and cognitive state, and co-morbidity. 10 signs/symptoms: asthenia, anorexia, cachexia, dysphagia, xerostomy, dyspnoea, oedemas, level of consciousness, presence of delirium, presence of pressure ulcers and some treatment data. Others variables considered were: responsible team, origin, destination when discharge, date and place of death, number of visits made and duration of monitoring. We developed a comparison between groups by Chi-squared test or the non-parametric Mann-Whitney U test and a survival analysis by Kaplan-Meier curves and the logrank test to determine differences between factors. The SPSS version 15.0 software package was used. 698 patients were included, 56.2% from Aragon and 43.8% from Catalonia. 60.3% were males, without differences between the regions. Characteristics relative to age, sex, place of residence and extension of oncological diseases were similar for both groups. We found significant differences between the two populations relative to survival time, co-morbidity, functional state, presence and intensity of a number of symptoms and the treatments, patient monitoring and the their destination after discharge. We can conclude that palliative care teams cover different profiles of patients with regard to their co-morbidity, functional, 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. PMID:23646293

  3. 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. PMID:25628769

  4. First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care

    PubMed Central

    Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

    2015-01-01

    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. PMID:25628769

  5. Why is High-Quality Research on Palliative Care So Hard To Do? Barriers to Improved Research from a Survey of Palliative Care Researchers

    PubMed Central

    Riffin, Catherine; Reid, M. Cary; Adelman, Ronald; Warmington, Marcus; Mehta, Sonal S.; Pillemer, Karl

    2014-01-01

    Abstract Background: Substantial agreement has been achieved on research priorities in palliative care over the past 15 years, as evidenced by consensus conferences and systematic reviews. Despite the presence of a widely endorsed research agenda, however, addressing the gaps in scientific knowledge has progressed slowly, suggesting that researchers face significant obstacles to conducting high-quality research on the most pressing topics in the field. Objective: To systematically identify barriers to improved and expanded palliative care research as reported by researchers. Design: Semistructured telephone interviews to solicit barriers to research in palliative care. Setting/Subjects: A purposive, interdisciplinary sample of 61 leading researchers in palliative care. Measurements: Interviews were transcribed and analyzed using standard qualitative methods. Results: Respondents named five barriers impeding progress: (1) funding, (2) institutional capacity, (3) researcher workforce, (4) challenges related to the topic and population (e.g., attrition, heightened human subjects protections), and (5) public and professional misunderstanding of palliative care and aversion to topics related to serious illness and end-of-life. Conclusions: Research in palliative care is being held back by significant barriers that require the attention of institutions and funders. The consensus within the interdisciplinary sample indicates that concentrated effort to address barriers related to funding and researcher workforce could facilitate progress on established research priorities. More research is needed on viable strategies for overcoming the identified barriers. PMID:24885960

  6. Evidence-Based Palliative Care in the Intensive Care Unit: A Systematic Review of Interventions

    PubMed Central

    Cheng, Jennifer; Vollenweider, Daniela; Galusca, Dragos; Smith, Thomas J.; Pronovost, Peter J.

    2014-01-01

    Abstract Background: Over the last 20 years, multiple interventions to better integrate palliative care and intensive care unit (ICU) care have been evaluated. This systematic review summarizes these studies and their outcomes. Methods: We searched MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Cochrane Library, and the Web of Science; performed a search of articles published by opinion leaders in the field; and reviewed hand-search articles as of August 13, 2012. The terms “palliative care” and “intensive care unit” were mapped to MeSH subject headings and “exploded.” We included trials of adult patients that evaluated an ICU intervention and addressed Robert Wood Johnson group-identified domains of high-quality end-of-life care in the ICU. We excluded case series, editorials, and review articles. We compared two types of interventions, integrative and consultative, focusing on the outcomes of patient and family satisfaction, mortality, and ICU and hospital length of stay (LOS), because these were most prevalent among studies. Results: Our search strategy yielded 3328 references, of which we included 37 publications detailing 30 unique interventions. Interventions and outcome measures were heterogeneous, and many studies were underpowered and/or subject to multiple biases. Most of the interventions resulted in a decrease in hospital and ICU LOS. Few interventions significantly affected satisfaction. With one exception, the interventions decreased or had no effect on mortality. There was no evidence of harm from any intervention. Conclusions: Heterogeneity of interventions made comparison of ICU-based palliative care interventions difficult. However, existing evidence suggests proactive palliative care in the ICU, using either consultative or integrative palliative care interventions, decrease hospital and ICU LOS, do not affect satisfaction, and either decrease or do not affect mortality. PMID:24517300

  7. 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

  8. The use of Skype in a community hospital inpatient palliative medicine consultation service.

    PubMed

    Brecher, David B

    2013-01-01

    Skype™, an Internet-based communication tool, has enhanced communication under numerous circumstances. As telemedicine continues to be an increasing part of medical practice, there will be more opportunities to use Skype and similar tools. Numerous scenarios in the lay literature have helped to highlight the potential uses. Although most commonly used to enhance physician-to-patient communication, there has been limited reported use of Skype for patient-to-family communication, especially in end of life and palliative care. Our inpatient Palliative Medicine Consultation Service has offered and used this technology to enhance our patients' quality of life. The objective was to provide another tool for our patients to use to communicate with family and/or friends, especially under circumstances in which clinical symptoms, functional status, financial concerns, or geographic limitations preclude in-person face-to face communication. PMID:22803591

  9. The Perspective of Non-oncologist Physicians on Patients with Metastatic Cancer and Palliative Care (ALONE Study): A Study of the Palliative Care Working Committee of the Turkish Oncology Group (TOG).

    PubMed

    Tanriverdi, Ozgur; Yavuzsen, Tugba; Akman, Tulay; Senler, Filiz Cay; Taskoylu, Burcu Yapar; Turhal, Serdar; Komurcu, Seref; Cehreli, Ruksan; Yaren, Arzu; Ozyilkan, Ozgur

    2015-06-01

    The aim of our study was to determine the perspective of non-oncologist physicians regarding their attitudes and beliefs associated with palliative care for patients with metastatic cancer. The study was planned as a cross-sectional survey, and non-oncologist physicians were reached via e-mail and social networking sites. The first part of the questionnaire involved demographic properties, the second part inquired as to the perspectives of participants regarding metastatic disease, and the third part was used to determine beliefs and attitudes about palliative care. All of the questions were five-point Likert-type questions. A total of 1734 physicians completed the questionnaire. The majority of participants were general surgeons or internal medicine specialists (21 and 18%, respectively), were male (61%), were younger than 50 years of age (54%), worked in the town center (67%), had more than 11 years of professional experience (57%), and worked in a hospital without an active oncology service (86%). A total of 71% of participants identified all patients with metastatic cancer as being terminal stage, 62% were unaware of palliative care techniques, 64% did not know about common supportive care options, 59% were against hospice, and 63% had no opinion on resuscitation. We determined that non-oncologist physicians believed that all patients with metastatic cancer are at the terminal stage and that palliative/supportive care is the oncologist's task. These data suggest that non-oncologist physicians would benefit from additional graduate and postgraduate courses on these topics. PMID:25631655

  10. Palliative care in neonatal neurology: robust support for infants, families and clinicians.

    PubMed

    Lemmon, M E; Bidegain, M; Boss, R D

    2016-05-01

    Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles into the care of infants with neurological injury. Here, we review data regarding neonatal symptom management, prognostic uncertainty, decision making, communication and parental support for neonatal neurology patients and their families. PMID:26658120

  11. Palliative critical care in the intensive care unit: A 2011 perspective

    PubMed Central

    Adolph, Michael D; Frier, Kimberly A; Stawicki, Stanislaw PA; Gerlach, Anthony T; Papadimos, Thomas J

    2011-01-01

    Pain relief and palliative care play an increasingly important role in the overall approach to critically ill and injured patients. Despite significant progress in clinical patient care, our understanding of death and the dying process remains limited. For various reasons, people tend to delay facing questions associated with end-of-life, and the fear of the unknown often creates an environment of avoidance and an atmosphere of taboo. The topic of end-of-life care is multifaceted. It incorporates medical, ethical, spiritual, and religious aspects, among many others. Our ability to sustain the lives of the critically ill may be complicated by continuing life support in medically futile scenarios. This article, as well as the remainder of the IJCIIS Symposium on End-of-Life in Trauma/Intensive Care Unit, will explore the most important issues in the field of modern end-of-life care and palliative medicine, with a focus on critically ill and injured patients. PMID:22229140

  12. Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians

    PubMed Central

    2011-01-01

    Background The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process. The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group. The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Methods Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. Results 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence in symptom management (p = 0.02) and confidence in terms of communication (p = 0.038). Useful aspects were pointed out, as well as others to be improved in future applications. The satisfaction of the intervention group was high. Conclusions The results of this study show that there was a significant increase of knowledge of 14%-20% and a significant increase in the perception of confidence in symptom management and communication in the intervention group in comparison with the control group that received traditional methods of education in palliative care or no educational activity at all. The overall satisfaction with the intervention was good-very good for most participants. This on-line educational model seems a useful tool for palliative care training in primary care physicians who have a high opinion about the integration of palliative care within primary care. The results of this study support the suggestion that learning effectiveness should be currently investigated comparing different Internet interventions, instead of Internet vs. no intervention. Trial Registration German Clinical Trials Register DRKS00000694 PMID:21605381

  13. 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 ...

  14. Drug utilization review on a tertiary palliative care unit.

    PubMed

    Llanes, Lea Renina; Fassbender, Konrad; Baracos, Vickie E; Watanabe, Sharon

    2006-05-01

    Drugs are indispensable for the management of symptoms in palliative care patients, and account for a significant proportion of expenditures on a Tertiary Palliative Care Unit (TPCU). Drug expenditures for Edmonton's TPCU increased by 40% in 2002 compared to 2001. Fifty-five percent of the increase was attributable to injectable fentanyl, oral and injectable ondansetron, and total parenteral nutrition (TPN). As there was no increase in the unit cost of these drugs between 2001 and 2002, the increased expenditures reflected increased utilization. The hypothesis of this study was that the increased utilization of these drugs reflected appropriate prescribing. The objective was to compare the indications for prescribing these drugs in 2002 against evidence- and consensus-based criteria. Patients who received these drugs while admitted to the TPCU from January 1 to December 31, 2002 were identified through the pharmacy database. Evidence- and consensus-based criteria for drug utilization were developed. Prescribing indications were retrospectively compared against the criteria. Drug prescriptions were categorized as follows: (1) meeting criteria, (2) not meeting criteria, or (3) uncertain. The drugs under study were prescribed during 48 out of 234 admissions to the TPCU in 2002. Prescriptions for fentanyl met criteria in 26 of 29 cases. Indications were unsuccessful therapy with morphine, hydromorphone, and oxycodone (20), requirement for rapid titration from fentanyl patch (5), renal failure (2), and sublingual administration for breakthrough pain (1). Prescriptions for ondansetron met criteria in 19 of 21 cases. Indications were nausea refractory to metoclopramide and dexamethasone (13), and nausea related to radiotherapy or chemotherapy (6). Prescriptions for TPN met criteria for initiation in only one of five cases. However, in all cases, TPN had been started prior to admission. In cases where death was considered imminent, TPN was continued pending consultation with the patient and family regarding discontinuation. These data indicate that the increased prescribing of fentanyl and ondansetron on the TPCU satisfied evidence- and consensus-based criteria in most cases, apparently justifying the associated increase in drug expenditures. This type of analysis may be useful whenever increased drug utilization requires review. A cost effectiveness analysis would be the next step in evaluating the costs vs. the benefits. The issue of discontinuing TPN in palliative care patients requires further investigation. PMID:16716876

  15. 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

  16. Pain Management and Symptom-Oriented Drug Therapy in Palliative Care

    PubMed Central

    Klein, Carsten; Lang, Ute; Bkki, 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

  17. 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. PMID:24705604

  18. [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

  19. Music therapy in pediatric palliative care: family-centered care to enhance quality of life.

    PubMed

    Lindenfelser, Kathryn J; Hense, Cherry; McFerran, Katrina

    2012-05-01

    Research into the value of music therapy in pediatric palliative care (PPC) has identified quality of life as one area of improvement for families caring for a child in the terminal stages of a life-threatening illness. This small-scale investigation collected data in a multisite, international study including Minnesota, USA, and Melbourne, Australia. An exploratory mixed method design used the qualitative data collected through interviews with parents to interpret results from the PedsQL Family Impact Module of overall parental quality of life. Parents described music therapy as resulting in physical improvements of their child by providing comfort and stimulation. They also valued the positive experiences shared by the family in music therapy sessions that were strength oriented and family centered. This highlighted the physical and communication scales within the PedsQL Family Impact Module, where minimal improvements were achieved in contrast to some strong results suggesting diminished quality of life in cognitive and daily activity domains. Despite the significant challenges faced by parents during this difficult time, parents described many positive experiences in music therapy, and the overall score for half of the parents in the study did not diminish. The value of music therapy as a service that addresses the family-centered agenda of PPC is endorsed by this study. PMID:22144660

  20. [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

  1. [Ethics and palliative care in patients with advanced cancer].

    PubMed

    Tenorio-González, Francisco

    2005-01-01

    Recent research in both the biology of cancer and the treatment of patients has increased the life expectancy of cancer patients with recurrence and who have a longer survival rate. Cancer is no longer considered a lethal but a chronic disease. More patients survive, but above all there are more patients with recurrences thus increasing the need for physical or psychological treatment of patients with longer lives. The American Cancer Society reported in 1992 that in the U.S. more than 8 million people survived between 4 and 5 years. This produces both an ethical and medical challenge for treatment of cancer patients. This paper reviews the actual criteria for palliative care: treatment for pain and the ethical and psychological treatment of advanced cancer patients and their families. PMID:16454965

  2. 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

  3. Use of amniotic membrane in bullous keratopathy palliative care

    PubMed Central

    Stefaniu, GI; Chiotoroiu, SM; Secureanu, FA; Purcarea, VL; Zemba, M

    2014-01-01

    Background: Assessment of efficiency of amniotic membrane covering in the improvement of bullous keratopathy symptoms. Material and method: The paper represents a clinical prospective study, which includes 42 patients diagnosed with bullous keratopathy and operated between January 2009 and November 2013 in the Department of Clinical Ophthalmology from “Dr. Carol Davila” Central Military Emergency Hospital. Follow up between 6 and 48 months, with an average of 22 months. Subject to research: corneal re-epithelisation, epithelial bullae, pain and photophobia relapse. Results: In 37 cases, the symptoms improved, in 8 cases the minimum symptoms persisted and in 29 cases the symptoms completely disappeared. In 5 cases, there were no significant improvements, symptoms reappeared briefly after membrane resorption. Conclusions: Amniotic membrane covering represents an efficient palliative care means in oedematous keratopathy. PMID:25870682

  4. Use of complementary therapies in hospice and palliative care.

    PubMed

    Vandergrift, Alison

    2013-01-01

    As society has become increasingly inquisitive about complementary therapies, various sectors of the medical community have begun to incorporate complementary therapies into their practice, studying their impact on client health and effectiveness in treating specific symptoms. This article describes the design and initial findings from a 1-year review of the implementation of massage and Reiki therapies on patients in a small hospice and palliative care program in central Connecticut. Over the course of 1 year, 114 massage sessions were provided to 52 different patients, all of which included Reiki. After completion of these sessions, patients were evaluated for changes in symptoms such as pain reduction, ease in breathing, stress/anxiety reduction, and increased relaxation, with the results being predominantly beneficial. PMID:23977801

  5. Psychosocial Issues in Palliative Care: A Review of Five Cases

    PubMed Central

    Onyeka, Tonia C

    2010-01-01

    Palliative care is not just vital in controlling symptoms of the patient’s disease condition, but also aims to extend the patient’s life, giving it a better quality. However, several times in the course of management, the psychosocial impact of cancer, HIV/AIDS, and other life-limiting disease conditions may not be noticed and dealt with during the admission period, thereby giving rise to a more complex situation than the disease condition itself. This article aims to review some psychosocial issues and measures that can be taken to address them. It highlights the various roles and the importance of the clinician, nurse, social worker, and other members of the multidisciplinary team in tackling these issues and will help healthcare professionals in this field achieve better practice in the future. PMID:21218001

  6. 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. PMID:26333757

  7. 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. PMID:26162537

  8. Leveraging the Health and Retirement Study To Advance Palliative Care Research

    PubMed Central

    Langa, Kenneth M.; Smith, Alexander K.; Cagle, John; Ornstein, Katherine; Silveira, Maria J.; Nicholas, Lauren; Covinsky, Kenneth E.; Ritchie, Christine S.

    2014-01-01

    Abstract Background: The critical need to expand and develop the palliative care evidence base was recently highlighted by the Journal of Palliative Medicine's series of articles describing the Research Priorities in Geriatric Palliative Care. The Health and Retirement Study (HRS) is uniquely positioned to address many priority areas of palliative care research. This nationally representative, ongoing, longitudinal study collects detailed survey data every 2 years, including demographics, health and functional characteristics, information on family and caregivers, and personal finances, and also conducts a proxy interview after each subject's death. The HRS can also be linked with Medicare claims data and many other data sources, e.g., U.S. Census, Dartmouth Atlas of Health Care. Setting: While the HRS offers innumerable research opportunities, these data are complex and limitations do exist. Therefore, we assembled an interdisciplinary group of investigators using the HRS for palliative care research to identify the key palliative care research gaps that may be amenable to study within the HRS and the strengths and weaknesses of the HRS for each of these topic areas. Conclusion: In this article we present the work of this group as a potential roadmap for investigators contemplating the use of HRS data for palliative care research. PMID:24694096

  9. Palliative care training and research: the development in europe and the bologna experience.

    PubMed

    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

  10. 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

  11. 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

  12. Pilot Testing of Triage Coding System in Home-based Palliative Care Using Edmonton Symptom Assessment Scale

    PubMed Central

    Dhiliwal, Sunil; Salins, Naveen; Deodhar, Jayitha; Rao, Raghavendra; Muckaden, Mary Ann

    2016-01-01

    Introduction: Home-based palliative care is an essential model of palliative care that aims to provide continuity of care at patient's own home in an effective and timely manner. This study was a pilot test of triage coding system in home-based palliative care using Edmonton Symptom Assessment System (ESAS) scale. Methods: Objective of the study was to evaluate if the triage coding system in home-based palliative care: (a) Facilitated timely intervention, (b) improved symptom control, and (c) avoided hospital deaths. Homecare services were coded as high (Group 1 - ESAS scores ≥7), medium (Group 2 - ESAS scores 4–6), and low (Group 3 - ESAS scores 0–3) priority based on ESAS scores. In high priority group, patients received home visit in 0–3 working days; medium priority group, patients received home visit in 0–10 working days; and low priority group, patients received home visit in 0–15 working days. The triage duration of home visit was arbitrarily decided based on the previous retrospective audit and consensus of the experts involved in prioritization and triaging in home care. Results: “High priority” patients were visited in 2.63 ± 0.75 days; “medium priority” patients were visited in 7.00 ± 1.5 days, and “low priority” patients were visited in 10.54 ± 2.7 days. High and medium priority groups had a statistically significant improvement in most of the ESAS symptoms following palliative home care intervention. Intergroup comparison showed that improvement in symptoms was the highest in high priority group compared to medium and low priority group. There was an 8.5% increase in home and hospice deaths following the introduction of triage coding system. There was a significant decrease in deaths in the hospital in Group 1 (6.3%) (χ2 = 27.3, P < 0.001) compared to Group 2 (28.6%) and Group 3 (15.4%). Group 2 had more hospital deaths. Interval duration from triaging to first intervention was a significant predictor of survival with odds ratio 0.75 indicating that time taken for intervention from triaging was more significantly affecting survival than group triaging. Conclusion: Pilot study of testing triaging coding system in home-based palliative care showed, triage coding system: (a) Facilitated early palliative home care intervention, (b) improved symptom control, (c) decreased hospital deaths, predominantly in high priority group, and (d) time taken for intervention from triaging was a significant predictor of survival.

  13. 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

  14. Early palliative care in advanced lung cancer: a qualitative study.

    PubMed

    Yoong, Jaclyn; Park, Elyse R; Greer, Joseph A; Jackson, Vicki A; Gallagher, Emily R; Pirl, William F; Back, Anthony L; Temel, Jennifer S

    2013-02-25

    BACKGROUND Early ambulatory palliative care (PC) is an emerging practice, and its key elements have not been defined. We conducted a qualitative analysis of data from a randomized controlled trial that demonstrated improved quality of life, mood, and survival in patients with newly diagnosed metastatic non-small cell lung cancer who received early PC integrated with standard oncologic care vs standard oncologic care alone. Our objectives were to (1) identify key elements of early PC clinic visits, (2) explore the timing of key elements, and (3) compare the content of PC and oncologic visit notes at the critical time points of clinical deterioration and radiographic disease progression. METHODS We randomly selected 20 patients who received early PC and survived within 4 periods: less than 3 months (n = 5), 3 to 6 months (n = 5), 6 to 12 months (n = 5), and 12 to 24 months (n = 5). We performed content analysis on PC and oncologic visit notes from the electronic health records of these patients. RESULTS Addressing symptoms and coping were the most prevalent components of the PC clinic visits. Initial visits focused on building relationships and rapport with patients and their families and on illness understanding, including prognostic awareness. Discussions about resuscitation preferences and hospice predominantly occurred during later visits. Comparing PC and oncologic care visits around critical time points, both included discussions about symptoms and illness status; however, PC visits emphasized psychosocial elements, such as coping, whereas oncologic care visits focused on cancer treatment and management of medical complications. CONCLUSIONS Early PC clinic visits emphasize managing symptoms, strengthening coping, and cultivating illness understanding and prognostic awareness in a responsive and time-sensitive model. During critical clinical time points, PC and oncologic care visits have distinct features that suggest a key role for PC involvement and enable oncologists to focus on cancer treatment and managing medical complications. PMID:23358690

  15. Validation of a New Instrument for Self-care in Spanish Palliative Care Professionals Nationwide.

    PubMed

    Galiana, Laura; Oliver, Amparo; Sansó, Noemí; Benito, Enric

    2015-01-01

    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. PMID:26364786

  16. Culture and spirituality: essential components of palliative care.

    PubMed

    Speck, Peter

    2016-06-01

    Palliative care advocates a holistic, multiprofessional approach to the care of people with life-threatening disease. In addition to the control of physical symptoms attention should also be paid to psychosocial, cultural and spiritual aspects of the patient's experience of illness. Guidance documents and research evidence reflect the complexity of the patient's journey and the need to regularly assess these areas of need over time. Cultural background can shape how patients respond to life-threatening illness, as can the beliefs held by the patients, whether religious or more broadly spiritual. Research evidence shows the importance of identifying and addressing cultural and spiritual aspects of care held by patients, families and staff. These are often neglected in clinical practice due to the focus on biomedical concerns and staff discomfort in engaging with beliefs and culture. Recent studies have highlighted gaps in the research, and some methodological difficulties and indicate many patients welcome healthcare staff enquiring about the importance of their beliefs and culture. Identifying research priorities is necessary to guide future research and strengthen the evidence base. PMID:26933233

  17. Best practices for pediatric palliative cancer care: a primer for clinical providers.

    PubMed

    Levine, Deena; Lam, Catherine G; Cunningham, Melody J; Remke, Stacy; Chrastek, Jody; Klick, Jeffrey; Macauley, Robert; Baker, Justin N

    2013-09-01

    Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care. PMID:24400391

  18. Veterinary hospice and palliative care: a comprehensive review of the literature.

    PubMed

    Goldberg, Katherine J

    2016-04-01

    The death of a pet is a universal experience for those who share their lives with animals. In parallel with a rising interest in palliative medicine, hospice care and advance-care planning within human medicine, increasing attention is currently being given to serious illness and death within veterinary medicine. Our ability to prolong life has created the need for thoughtful end of life discourse. Interest in hospice and palliative care for companion animals is on the rise, yet there has been limited scholarly research in these areas to date. This review concludes that veterinary hospice and palliative care is currently hindered by an inadequate amount of scholarly research to guide clinicians. Given a lack of prospective studies in veterinary hospice and palliative care to date, a significant opportunity exists for veterinary teaching institutions to contribute to the literature in an important and growing field. PMID:27056812

  19. Effectively training the hospice and palliative medicine physician workforce for improved end-of-life health care in the United States.

    PubMed

    Bui, Thomas

    2012-09-01

    The widening gap between the demand for palliative care services and the supply of trained palliative care professionals has resulted in considerable end-of-life distress for patients. Without formal training in palliative medicine and end-of-life symptom management, physicians in the United States are less equipped to competently address seriously ill and dying patients' medical, emotional, and spiritual needs. Recent attempts within graduate medical education training deliberately seek to prepare a critical mass of physicians as the new hospice and palliative medicine workforce in the United States. In addition, healthcare reform proposals may re-define the National Health Service Corps (NHSC) post-graduate training over the next five years and the Hospice Medicare Benefit altogether. Healthcare policy options include steady changes at multiple levels of medical training -namely, medical school curriculum mandates, requiring all graduate physician residency training to foster patient-centered communication skills and discussions about advanced directives, and instituting palliative medicine proficiency Continuing Medical Education (CME) requirements for all states' medical licensing boards. Attracting qualified physicians to serve patients at the end of life, innovative medical school loan repayment programs and scholarships will also foster excellence in the field of hospice and palliative medicine. Correcting our current paucity of formal training in palliative medicine better utilizes hospice and restores patients' dignity at the end of life. PMID:22174315

  20. [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. PMID:27097502

  1. Integrating palliative care in oncologic emergency departments: Challenges and opportunities.

    PubMed

    Elsayem, Ahmed F; Elzubeir, Hiba E; Brock, Patricia A; Todd, Knox H

    2016-04-10

    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

  2. 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

  3. 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

  4. Caring for caregivers: experiences and evaluation of interventions for a palliative care team.

    PubMed

    van Staa, A L; Visser, A; van der Zouwe, N

    2000-08-01

    Palliative care is a fairly recent development in The Netherlands. The first palliative unit in a hospital setting was the Palliative Care Unit (PCU) in the Dr Daniel den Hoed Clinic, a specialized oncology hospital, now part of the Academic Hospital Rotterdam (AZR-Daniel). This PCU was designed to function as an academic laboratory, where palliative care concepts are being developed, put into practice, and evaluated. It's mission was to put the patient first in mind, heart and soul. Right from the start, special attention was paid to the implementation a system of 'care for caregivers' in order to support the staff of the PCU in caring for the terminally ill and to prevent burnout. A process evaluation has been carried out with a special focus on the effects of the implementation of the new unit on the wellbeing of the interdisciplinary team of caregivers during the first year of its existence and on the experiences with a residential training preceding the start of patient care activities and the weekly staff support meetings. In the second half of the first year, the PCU staff experienced increased levels of job-related stress. Most stress was attributed to organizational factors, related to management issues but also to lack of institutional support. Teamwork also contributed to stress within the interdisciplinary team. Direct patient care activities also had some impact on experienced stress levels, through a heavy work-load of complex care, a shortage of staff and an experienced lack of competence. While the staff support activities were designed to give emotional support and deal with death and bereavement, these issues did not arise as major problems. As a consequence, the staff support in the PCU was perhaps less successful than it could have been. However, the high stress levels of this innovative palliative team warrant attention. We discuss how support meetings could be a more effective way of caring for staff. They should be accompanied by adequate resources, a supportive management structure, and an extensive educational program. PMID:10900371

  5. Health care professionals’ perceptions towards lifelong learning in palliative care for general practitioners: a focus group study

    PubMed Central

    2014-01-01

    Background There is a growing need for palliative care. The majority of palliative patients prefer their general practitioner (GP) to organize their palliative home care. General practitioners need a range of competences to perform this task. However, there has been no general description so far of how GPs keep these competences up-to-date. The present study explores current experiences, views and preferences towards training and education in palliative care among GPs, palliative home-care professionals and professionals from organizations who provide training and education. Methods Five focus groups were brought together in Belgium, with a total of 29 participants, including members of the three categories mentioned above. They were analysed using a constant comparison method. Results The analysis revealed that undergraduate education and continuing medical education (CME) while in practice, is insufficient to prepare GPs for their palliative work. Workplace learning (WPL) through collaboration with specialized palliative home-care nurses seems to be a valuable alternative. Conclusions The effectiveness of undergraduate education might be enhanced by adding practical experience. Providers of continuing medical education should look to organize interactive, practice-based and interprofessional sessions. Therefore, teachers need to be trained to run small group discussions. In order to optimize workplace learning, health care professionals should be trained to monitor each other’s practice and to provide effective feedback. Further research is needed to clarify which aspects of interprofessional teamwork (e.g. professional hierarchy, agreements on tasks and responsibilities) influence the effectiveness of workplace learning. PMID:24552145

  6. An evaluation of teamwork within a specialist palliative care unit.

    PubMed

    Donaghy, Kevin; Devlin, Breige

    2002-11-01

    This small-scale 10-month study evaluated teamworking within a specialist palliative care team. The study aims were to: collect, analyse and summarize information on how team members perceive teamworking; compare team members' perceptions after a teambuilding workshop; and to evaluate the longer term effect of this training on the team. A group of practitioners from a local Marie Curie Cancer Care Centre was selected and included members from all available disciplines. A piloted questionnaire was used to obtain qualitative and quantitative input. The team as a whole scored themselves above average on almost all counts. Following the teambuilding workshop significant improvement was seen in areas such as role appreciation and communication but not all improvements were long lasting. A perception of understaffing was noted as being one of the largest negative influences on teamwork whereas the setting and maintaining of agreed team objectives and having sufficient education opportunity were positive influences. Although teambuilding sessions appear to have the potential to produce the desired benefits, they should not be initiated at a time when staff already feel anxiety over their workload. PMID:12514461

  7. Prevalence and risk factors of depressive symptoms in a Canadian palliative home care population: a cross-sectional study

    PubMed Central

    2014-01-01

    Background Depression in palliative care patients is important because of its intrinsic burden and association with elevated physical symptoms, reduced immunity and increased mortality risk. Identifying risk factors associated with depression can enable clinicians to more readily diagnose it, which is important since depression is treatable. The purpose of this cross-sectional study was to determine the prevalence of depressive symptoms and risk factors associated with them in a large sample of palliative home care patients. Methods The data come from interRAI Palliative Care assessments completed between 2006 and 2012. The sample (n = 5144) consists of adults residing in Ontario (Canada), receiving home care services, classified as palliative, and not experiencing significant cognitive impairment. Logistic regression identified the risk factors associated with depressive symptoms. The dependent variable was the Depression Rating Scale (DRS) and the independent variables were functional indicators from the interRAI assessment and other variables identified in the literature. We examined the results of the complete case and multiple imputation analyses, and found them to be similar. Results The prevalence of depressive symptoms was 9.8%. The risk factors associated with depressive symptoms were (pooled estimates, multiple imputation): low life satisfaction (OR = 3.01 [CI = 2.37-3.82]), severe and moderate sleep disorders (2.56 [2.05-3.19] and 1.56 [1.18-2.06]), health instability (2.12 [1.42-3.18]), caregiver distress 2.01 [1.62-2.51]), daily pain (1.73 [1.35-2.22]), cognitive impairment (1.45 [1.13-1.87]), being female (1.37 [1.11-1.68]), and gastrointestinal symptoms (1.27 [1.03-1.55]). Life satisfaction mediated the effect of prognostic awareness on depressive symptoms. Conclusions The prevalence of depressive symptoms in our study was close to the median of 10-20% reported in the palliative care literature, suggesting they are present but by no means inevitable in palliative patients. Most of the factors associated with depressive symptoms in our study are amenable to clinical intervention and often targeted in palliative care programs. Designing interventions to address them can be challenging, however, requiring careful attention to patient preferences, the spectrum of comorbid conditions they face, and their social supports. Life satisfaction was one of the strongest factors associated with depressive symptoms in our study, and is likely to be among the most challenging to address. PMID:24636452

  8. Palliative care--transiting old tradition and values into the modern health care practice.

    PubMed

    Krasuska, Małgorzata E; Stanisławek, Andrzej; Mazurkiewicz, Maria; Daniluk, Jadwiga

    2002-01-01

    Care of the dying patient is care for the patient who is still living, it is helping that patient to live his or her life to the fullest whether at home or hospice, or in hospital. It is care that is not just centered on the individual but includes members of the family. It is focused on improving the quality of patients' life, by incorporating into the professional care most of unique human values, such as respect, empathy, compassion and tender loving care. Palliative care is a broad band of care of indeterminate length, and does not necessarily end with the death of the patient. Until life begins to glow again, some surviving relatives may need support during the bereavement period. Thanks to Dr Elisabeth Kübler-Ross and Dame Cicely Saunders, two great women visionaries and leaders of the emergence of Palliative Care, one of the best things that has happened to medicine in the 20th century, the development of care for dying patients and their families was possible. PMID:12898838

  9. Nurses' perceptions around providing palliative care for long-term care residents with dementia.

    PubMed

    Kaasalainen, Sharon; Brazil, Kevin; Ploeg, Jenny; Martin, Lori Schindel

    2007-01-01

    Providing palliative care for residents with dementia in long-term care (LTC) settings is problematic due to their declining verbal abilities and related challenges. The goal of this study was to explore nurses' perceptions around providing palliative care for such residents. Using a qualitative descriptive design, data were gathered from focus groups at three LTC facilities. Participants represented all levels of nursing staff. Concepts that emerged from the data were labelled, categorized, and coded in an iterative manner. Nurses appraise residents' general deterioration as a main factor in deciding that a resident is palliative. Nurses often employ creative strategies using limited resources to facilitate care, but are challenged by environmental restrictions and insufficient educational preparation. However, nurses said they do not wish for residents to be transferred to a hospice setting, as they wish to grieve with residents and their family members. Nurses aim to facilitate a "good death" for residents with dementia, while trying to manage multiple demands and deal with environmental issues. Supportive and educational initiatives are needed for nursing staff and families of dying residents. PMID:18069438

  10. 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. PMID:26380925

  11. Creative Solution for Implementation of Experiential, Competency-Based Palliative Care Training for Internal Medicine Residents

    PubMed Central

    Shpritz, Deborah W.; Wolfsthal, Susan D.; Zimrin, Ann B.; Keay, Timothy J.; Fang, Hong-Bin; Schuetz, Carl A.; Stapleton, Laura M.; Weissman, David E.

    2011-01-01

    To graduate internal medicine residents with basic competency in palliative care, we employ a two-pronged strategy targeted at both residents and attending physicians as learners. The first prong provides a knowledge foundation using web-based learning programs designed specifically for residents and clinical faculty members. The second prong is assessment of resident competency in key palliative care domains by faculty members using direct observation during clinical rotations. The faculty training program contains Competency Assessment Tools addressing 19 topics distributed amongst four broad palliative care domains designed to assist faculty members in making the clinical competency assessments. Residents are required to complete their web-based training by the end of their internship year; they must demonstrate competency in one skill from each of the four broad palliative care domains prior to graduation. Resident and faculty evaluation of the training programs is favorable. Outcome-based measures are planned to evaluate long-term program effectiveness. PMID:21553329

  12. 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

  13. Perceived barriers and facilitators for general practitioner-patient communication in palliative care: a systematic review.

    PubMed

    Slort, W; Schweitzer, B P M; Blankenstein, A H; Abarshi, E A; Riphagen, I I; Echteld, M A; Aaronson, N K; van der Horst, He; Deliens, L

    2011-09-01

    While effective general practitioner (GP)-patient communication is required for the provision of good palliative care, barriers and facilitators for this communication are largely unknown. We aimed to identify barriers and facilitators for GP-patient communication in palliative care. In a systematic review seven computerized databases were searched to find empirical studies on GP-patient communication in palliative care. Fifteen qualitative studies and seven quantitative questionnaire studies were included. The main perceived barriers were GPs' lack of availability, and patients' and GPs' ambivalence to discuss 'bad prognosis'. Main perceived facilitators were GPs being available, initiating discussion about several end-of-life issues and anticipating various scenarios. Lack of availability and failure to discuss former mistakes appear to be blind spots of GPs. GPs should be more forthcoming to initiate discussions with palliative care patients about prognosis and end-of-life issues. Empirical studies are needed to investigate the effectiveness of the perceived barriers and facilitators. PMID:21273221

  14. [The cultural history of palliative care in primitive societies: an integrative review].

    PubMed

    Siles González, José; Solano Ruiz, Maria Del Carmen

    2012-08-01

    The objective of this study is to describe the evolution of palliative care in order to reflect on the possibility of its origin in primitive cultures and their relationship with the beginnings of the cult of the dead. It describes the change in the symbolic structures and social interactions involved in palliative care during prehistory: functional unit, functional framework and functional element. The theoretical framework is based on cultural history, the dialectical structural model and symbolic interactionism. Categorization techniques, cultural history and dialectic structuralism analyses were performed. Palliative care existed in primitive societies, mostly associated with the rites of passage with a high symbolic content. The social structures - functional unit, functional framework and functional element - are the pillars that supported palliative care in prehistory societies. PMID:23018416

  15. The Palliative Care in Heart Failure (PAL-HF) Trial: Rationale and Design

    PubMed Central

    Mentz, Robert J.; Tulsky, James A.; Granger, Bradi B.; Anstrom, Kevin J.; Adams, Patricia A.; Dodson, Gwen C.; Fiuzat, Mona; Johnson, Kimberly S.; Patel, Chetan B.; Steinhauser, Karen E.; Taylor, Donald H.; O’Connor, Christopher M.; Rogers, Joseph G.

    2014-01-01

    Background The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life mandates greater attention to palliative care as a routine component of advanced HF management. Limited evidence exists from randomized, controlled trials supporting the use of interdisciplinary palliative care in HF. Methods The Palliative Care in Heart Failure trial (PAL-HF) is a prospective, controlled, unblinded, single-center study of an interdisciplinary palliative care intervention in 200 patients with advanced HF estimated to have a high likelihood of mortality or re-hospitalization in the ensuing 6 months. The 6-month PAL-HF intervention focuses on physical and psychosocial symptom relief, attention to spiritual concerns and advanced care planning. The primary endpoint is health-related quality of life measured by the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy with Palliative Care Subscale score at 6 months. Secondary endpoints include changes in anxiety/depression, spiritual well-being, caregiver satisfaction, cost and resource utilization, and a composite of death, HF hospitalization and quality of life. Conclusions PAL-HF is a randomized, controlled clinical trial that will help evaluate the efficacy and cost-effectiveness of palliative care in advanced HF using a patient-centered outcome as well as clinical and economic endpoints. PMID:25440791

  16. Strategies and Innovative Models for Delivering Palliative Care in Nursing Homes

    PubMed Central

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

    2016-01-01

    The goals of palliative care address critical issues for individuals with complex and serious illness residing in nursing homes, including pain and symptom management, communication, preparation for death, decisions about treatment preferences, and caregiver support. Because of the uncertain prognosis associated with chronic nonmalignant diseases such as dementia, many nursing home residents are either not referred to hospice or have very short or very long hospice stays. The integration of palliative care into nursing homes offers a potential solution to the challenges relating to hospice eligibility, staffing, training, and obtaining adequate reimbursement for care that aligns with resident and surrogate’s preferences and needs. However, the delivery of palliative care in nursing homes is hindered by both regulatory and staffing barriers and, as a result, is rare. In this article, we draw on interviews with nursing home executives, practitioners, and researchers to describe the barriers to nursing home palliative care. We then describe 3 existing and successful models for providing nonhospice palliative care to nursing home residents and discuss their ongoing strengths and challenges. We conclude with specific policy proposals to expedite the integration of palliative care into the nursing home setting. PMID:21266284

  17. Adverse events arising from a palliative care survey.

    PubMed

    Braithwaite, M; Philip, J; Finlayson, F; Tranberg, H; Gold, M; Kotsimbos, T; Wilson, J

    2009-10-01

    Development of evidence-based practice requires investigation of the attitudes and needs of patients, families and healthcare professionals, particularly for sensitive subject areas. Cystic fibrosis (CF) is a recessively inherited life-limiting disorder resulting in early death. Patients with this condition generally expect that lung transplantation will be an available treatment option; however, this is uncertain. A dual approach to care that involves both preparing patients for transplant assessment, while simultaneously exploring acceptable palliative care options is needed. A survey amongst patients with CF, their families and health carers was conducted to understand their attitudes and needs in relation to end-of-life care. The survey encompassed five separate domains, with a total of 60 questions requiring approximately 20 min to complete. Of the 200 surveys sent to patients, 82 (41%) completed responses were received. The Institutional Ethics Committee received six complaints from families of seven patients (3.5% of those surveyed). This article explores the nature of the adverse responses to the survey. The majority of complaints were received from family members rather than from patients. Complaints described dissatisfaction with the topic, little warning about the study and felt it to be inappropriate for their family member's level of health. Survey instruments used to determine attitudes and needs in relation to end-of-life patient care are likely to elicit adverse responses that should be reported in a similar way to other investigational studies. Also arising from adverse responses and the complaint process, is the impact of criticism on study researchers. PMID:19648221

  18. 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

  19. Hospice Care: What Services Do Patients and Their Families Receive?

    PubMed Central

    Carlson, Melissa D A; Morrison, R Sean; Holford, Theodore R; Bradley, Elizabeth H

    2007-01-01

    Objective To determine the degree to which patients and families enrolled with hospice received services across key categories of palliative care, the extent of hospice-level variability in services delivered, and changes over time in services delivered. Data Source Nationally representative sample of 9,409 discharged patients from 2,066 hospices in the National Home and Hospice Care Survey. Study Design Observational, cross-sectional study conducted from 1992 to 2000. The primary outcome is the receipt of services across five key categories of palliative care: nursing care, physician care, medication management, psychosocial care, and caregiver support. Data Collection Data were obtained via interview with the hospice staff member most familiar with the patient's care, in conjunction with medical record review. Principle Findings In 2000, 22 percent of patients enrolled with hospice received services across five key categories of palliative care. There was marked variation across hospices in service delivery. One-third of hospices provided patients and families services in one or two of the five key categories of palliative care, whereas 14 percent of hospices provided services across five key categories of palliative care. In multivariable analysis, the odds of receiving any additional hospice service was significantly greater in later compared with earlier years (odds ratio = 1.10, 95 percent confidence interval 1.01–1.20). Nevertheless, the percentages of patients in 2000 receiving medication management (59 percent), respite care (7 percent), and physician services (30 percent) remained low. Conclusions Hospice care for patients and families varies substantially across hospices. Whereas some hospices provide services across the key categories of palliative care, other hospices do not provide this breadth of services. Greater understanding of the causes of variation in service delivery as well as its impact on patient and family outcomes and satisfaction with end-of-life care is a critical subject for future research. Changes in Medicare's reimbursement policies may help hospices increase the range of services provided to patients and families. PMID:17610443

  20. Lived experiences of adult community nurses delivering palliative care to children and young people in rural areas.

    PubMed

    Reid, Fiona Cathryn

    2013-11-01

    The anticipated death of a child or young person is a relatively rare occurrence in the Western world. Many families receive support from children's health-care services until the late stages of palliation, with adult community nurses being involved in just an occasional end-of-life care episode in the home during their entire career. This creates challenges in nurses' experiential reflection, development of knowledge and skills, and building of nurse-family relationships. Individual semi-structured interviews were conducted with 10 adult community nurses from a rural part of Scotland to explore their experiences of providing palliative care to children. The material was analysed using a qualitative phenomenological thematic approach. Four key themes emerged: emotional preparedness, navigating the professional 'road', becoming part of the family, and it's everybody's business. Significant issues were highlighted in relation to nurses' coping, with implications for practice. Recommendations are made for further research into rural contextual dilemmas. PMID:24263898

  1. In the shadow of death: existential and spiritual concerns among persons receiving palliative care.

    PubMed

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

    2014-01-01

    This study explores existential and spiritual concerns from the perspective of people receiving palliative care. It examines the meaning of these concerns, their influence on people's lives and investigates the connections between them. In-depth qualitative interviews were conducted with ten persons. Findings reveal existential and spiritual aspects as interconnected and an integral part of the participants' everyday existence. It concludes with a call for a better understanding of these phenomena in the palliative care context. PMID:25241482

  2. 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. PMID:24488541

  3. [Intensive care - palliative care. Contradiction or supplement? Considerations on ethical issues and principles in the treatment of dying patients].

    PubMed

    Mller-Busch, H C

    2001-12-01

    Over the last five decades the progress in intensive care has extended the limitations of controlling the process of dying and given doctors more influence in determining the time of death. More recently, palliative care has emerged as a new approach in response to the ethical dilemmas of modern medicine, which accepts that dying is a natural process that should not be hastened or delayed through medical interventions. While in Germany in 1999 more than 50 000 people have died in intensive care units, only a small number of 8000 patients have died in palliative care. In comparison to the highly-developed intensive care sector, palliative care is a much neglected area. The public debate following the legalisation of euthanasia in the Netherlands has highlighted concerns in Germany that intensive care has the potential of inappropriately prolonging life and raised expectations about the alternative therapies offered by palliative care. Doctors in intensive care and in palliative care face similar ethical dilemmas, though with a different weighting: the dilemma between professional judgement and patient autonomy, between traditional medical roles and patient self-determination and the dilemma of extending the span of life at the expense of quality of life. The approach of palliative care with its strong focus on alleviating the suffering of the terminally ill, has influenced the ethical debate of dying in intensive care. Although intensive care and palliative care have different aims and priorities, there are common problems of decision-making which could benefit from a shared orientation and interdisciplinary debate. Both the interpretation of a dying parent's will as well as withdrawing or withholding treatment in patients who are unable to decide for themselves should not merely be guided by the debate on active and passive euthanasia, but rather take into account the appropriateness or inappropriateness of medical actions in the specific situation. PMID:11743668

  4. Identifying Patients in the Acute Psychiatric Hospital Who May Benefit From a Palliative Care Approach.

    PubMed

    Burton, M Caroline; Warren, Mark; Cha, Stephen S; Stevens, Maria; Blommer, Megan; Kung, Simon; Lapid, Maria I

    2016-04-01

    Identifying patients who will benefit from a palliative care approach is the first critical step in integrating palliative with curative therapy. Criteria are established that identify hospitalized medical patients who are near end of life, yet there are no criteria with respect to hospitalized patients with psychiatric disorders. The records of 276 consecutive patients admitted to a dedicated inpatient psychiatric unit were reviewed to identify prognostic criteria predictive of mortality. Mortality predictors were 2 or more admissions in the past year (P = .0114) and older age (P = .0006). Twenty-two percent of patients met National Hospice and Palliative Care Organization noncancer criteria for dementia. Palliative care intervention should be considered when treating inpatients with psychiatric disorders, especially older patients who have a previous hospitalization or history of dementia. PMID:25318929

  5. 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. PMID:23972474

  6. 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. PMID:23532030

  7. [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

  8. Symptom priority and course of symptomatology in specialized palliative care.

    PubMed

    Strömgren, Annette S; Sjogren, Per; Goldschmidt, Dorthe; Petersen, Morten Aagaard; Pedersen, Lise; Groenvold, Mogens

    2006-03-01

    The study aim was to explore which symptoms/problems cancer patients in palliative care consider most distressing, and to investigate how prioritization at first contact was associated with patient-assessed symptom intensity and change in intensity over time. Initially, 175 patients named and prioritized their five most distressing symptoms. Weekly, they completed the following self-assessment questionnaires: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30, Edmonton Symptom Assessment System, and the Hospital Anxiety and Depression Scale. Initial symptom intensity scores and weekly changes were calculated and compared with prioritization of the same symptom. Pain, fatigue, physical function, appetite, nausea/vomiting, dyspnea, and depression were the symptoms most often prioritized. Priority was associated with initial scoring of pain, appetite, nausea/vomiting, dyspnea, constipation, depression, and anxiety, but not with fatigue, physical function, role function, or inactivity. Priority was associated with change in symptom intensity for pain, reduced appetite, nausea/vomiting, and constipation. Symptom prioritization may be a useful guide to choice of treatment as well as to longitudinal symptom evaluation. PMID:16563314

  9. Perception of Iranian nurses regarding ethics-based palliative care in cancer patients

    PubMed Central

    Hamooleh, Marjan Mardani; Borimnejad, Leili; Seyedfatemi, Naimeh; Tahmasebi, Mamak

    2013-01-01

    Palliative care is still a topic under discussion in the Iranian healthcare system, and cancer patients require palliative care. Moreover, nursing ethics has an important role in caring for these patients. The purpose of this study was to identify the perception of Iranian nurses regarding ethics-based palliative care in cancer patients. This study was done with a qualitative approach and by using content analysis. In this study, 14 nurses were selected through purposive sampling, and a face-to-face semi structured interview was conducted with each of them. After data collection, all interviews were transcribed and reviewed, and categories were extracted. At first, similarities in meaning were reviewed and based on centralization arranged in sub-categories. Then, relevant sub-categories were arranged in a category after a second review. In general, original categories in the ethics-based palliative care in cancer patients encompass the following: “human dignity”, “professional truthfulness” and “altruism”. Human dignity has 3 sub-categories consisting of ‘respecting patients’, ‘paying attention to patient values’ and ‘empathizing’. Professional truthfulness has 2 sub-categories consisting of ‘truthful speech’ and ‘truthful action’. Lastly, altruism has 3 sub-categories consisting of ‘complete and multi-dimensional patient acceptance’, ‘supportive behavior’ and ‘responsibility’. Content analysis of ethics-based palliative care in cancer patients revealed the required conditions for this type of care based on the perception of nurses. The results of this study suggest that in nurses’ point of view, human dignity, professional truthfulness and altruism all have important roles in ethics-based palliative care in cancer. The findings of this study will give nurses a greater knowledge about ethics-based palliative care in cancer patients, leading to a better understanding of the ethical needs of these patients, and may ultimately help improve the nursing practice. PMID:24427489

  10. Paediatric palliative care at home: a single centre’s experience

    PubMed Central

    Chong, Lee Ai; Khalid, Farah

    2016-01-01

    INTRODUCTION There is increased awareness of paediatric palliative care in Malaysia, but no local published data on home care services. We aimed to describe the paediatric experience at Hospis Malaysia, a community-based palliative care provider in Malaysia. METHODS We conducted a retrospective case note review of patients aged up to 21 years who were referred to Hospis Malaysia from 2009 to 2013. RESULTS A total of 137 patients (92 male, 45 female) with a median age of 140 (3–250) months were included in this study. The majority (71.5%) had malignancies. At referral, 62 patients were still in hospital and 17 died prior to discharge. A total of 108 patients received home visits. At the first home visit, 89.8% of patients had at least one physical symptom. Pain was the most common (52.5%) symptom. Patients had various supportive devices: 39 were on feeding tubes, ten had tracheostomies, five were on bilevel positive airway pressure and ten had urinary catheters. 66 families discussed the preferred location of care at end-of-life. Among those who died, 78.9% died at home, as they preferred (p < 0.001). Regression analysis showed no statistically significant association between a home death and age, diagnosis and number of home visits. Bereavement follow-up occurred for 93.3% of families. CONCLUSION Community care referrals tend to occur late, with 25.5% of patients dying within two weeks of referral. At referral, patients often had untreated physical symptoms. The majority of families preferred and had a home death. PMID:26893078

  11. 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

  12. 77 FR 76053 - Proposed Collection; Comment Request; Pediatric Palliative Care Campaign Pilot Survey

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-12-26

    ... developed a Pediatric Palliative Care Campaign to address the communications challenges faced by health care...) determine if the pilot campaign is effective, relevant, and useful to health care providers who recommend... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH...

  13. Supporting cancer patients with palliative care needs: district nurses' role perceptions.

    PubMed

    Griffiths, Jane; Ewing, Gail; Rogers, Margaret; Barclay, Stephen; Martin, Anna; McCabe, Janet; Todd, Chris

    2007-01-01

    The aim of this study was to examine UK district nurses' perceptions of their role in supporting palliative care cancer patients. Patients with cancer are living longer with the disease. District nurses are the largest UK workforce caring for people with cancer at home, the preferred place of care. Meeting patients' supportive and palliative care needs is complex. Little is known about district nurses' supportive role in the early phase of palliative care. Semistructured interviews were conducted with 34 district nurses. Data were analyzed thematically, with assistance from Atlas/ti. A dominant theme emerging from the interviews was ambiguity in the district nurses' supportive role in early palliative care. District nurses discussed the importance of making contact early on to support cancer patients and their families but had difficulty articulating this "support." Ambiguity, lack of confidence, and perceived skill deficits presented district nurses with dilemmas that were difficult to resolve. District nurses have great potential for meeting cancer patients' supportive and palliative care needs, a potential not currently realized. Education alone is unlikely to improve practice without an understanding of the tensions faced by district nurses in their work. Recognizing and addressing dilemmas in the everyday work of district nurses is central to moving practice forward. PMID:17413782

  14. The Dual Rounding Model: Forging Therapeutic Alliances 
in Oncology and Palliative Care.

    PubMed

    Baxley, Carey E

    2016-04-01

    Inpatients with solid tumors at Duke University Hospital in Durham, NC, are cared for in a dynamic integrated care model that incorporates medical oncology and palliative care. This has profound implications for patients, their loved ones, medical and surgical staff, and oncology nurses. As a nurse with less than three years of experience, my participation in a setting that uses the Dual Rounding Model has accelerated my professional and personal development. During a typical shift, I am an oncology nurse, a palliative care nurse, and a hospice nurse.
. PMID:26991719

  15. PaTz groups for primary palliative care: reinventing cooperation between general practitioners and district nurses in palliative care: an evaluation study combining data from focus groups and a questionnaire

    PubMed Central

    2014-01-01

    Background PaTz (an acronym for ‘PAlliatieve Thuis Zorg’; palliative care at home) is an intervention to improve palliative care provision and strengthen the generalist knowledge of palliative care. In PaTz general practitioners and district nurses meet on a regular basis to identify patients with palliative care needs and to discuss care for these patients. This study explores experiences with regard to collaboration between general practitioners and district nurses, and perceived benefits of and barriers for implementation of PaTz. Methods This study is conducted within the primary care setting. Participants were 24 general practitioners who filled in a questionnaire, and seven general practitioners, five district nurses and two palliative care consultants who attended one of two focus groups. Results PaTz led to improved collaboration. Participants felt informational and emotional support from other PaTz participants. Also they felt that continuity of care was enhanced by PaTz. Practical recommendations for implementation were: meetings every 6 to 8 weeks, regular attendance from both general practitioners and district nurses, presence of a palliative care consultant, and a strong chairman. Conclusions PaTz is successful in enhancing collaboration in primary palliative care and easy to implement. Participants felt it improved continuity of care and knowledge on palliative care. Further research is needed to investigate whether patient and carer outcomes improve. PMID:24444024

  16. Patient-centered care or cultural competence: negotiating palliative care at home for Chinese Canadian immigrants.

    PubMed

    Nielsen, Lisa Seto; Angus, Jan E; Howell, Doris; Husain, Amna; Gastaldo, Denise

    2015-06-01

    The literature about Chinese attitudes toward death and dying contains frequent references to strong taboos against open discussion about death; consequently, there is an assumption that dying at home is not the preferred option. This focused ethnographic study examined the palliative home care experiences of 4 Chinese immigrants with terminal cancer, their family caregivers, and home care nurses and key informant interviews with 11 health care providers. Three main themes emerged: (1) the many facets of taboo; (2) discursive tensions between patient-centered care and cultural competence; and (3) rethinking language barriers. Thus, training on cultural competence needs to move away from models that portray cultural beliefs as shared, fixed patterns, and take into account the complicated reality of everyday care provision at end of life in the home. PMID:24707010

  17. [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

  18. Palliative care, public health and justice: setting priorities in resource poor countries.

    PubMed

    Blinderman, Craig

    2009-12-01

    Many countries have not considered palliative care a public health problem. With limited resources, disease-oriented therapies and prevention measures take priority. In this paper, I intend to describe the moral framework for considering palliative care as a public health priority in resource-poor countries. A distributive theory of justice for health care should consider integrative palliative care as morally required as it contributes to improving normal functioning and preserving opportunities for the individual. For patients requiring terminal care, we are guided less by principles of justice and more by the duty to relieve suffering and society's commitment to protecting the professional's obligation to uphold principles of beneficence, compassion and non-abandonment. A fair deliberation process is necessary to allow these strong moral commitments to serve as reasons when setting priorities in resource poor countries. PMID:19811525

  19. Perinatal and Pediatric Issues in Palliative and End-of-Life Care from the 2011 Summit on Compassionate Care

    PubMed Central

    Youngblut, JoAnne M.; Brooten, Dorothy

    2012-01-01

    More than 25,000 infants and children die in US hospitals annually; 86% occur in the NICU or PICU. Parents see the child’s pain and suffering and, near the point of death, must decide whether to resuscitate, limit medical treatment and/or withdraw life support. Immediately after the death parents must decide whether to see and/or hold the infant/child, donate organs, agree to an autopsy, make funeral arrangements, and somehow maintain functioning. Few children and their families receive pediatric palliative care services, especially those from minority groups. Barriers to these programs include lack of services, difficulty identifying the dying point, discomfort in withholding or withdrawing treatments, communication problems, conflicts in care among providers and between parents and providers, and differences in cultural beliefs about end-of-life care. The 2011 NIH Summit on the Science of Compassion provided recommendations in family involvement, end-of-life care, communication, health care delivery, and transdisciplinary participation. PMID:23036690

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

    PubMed Central

    Hoek, Patrick; Grandjean, Ilse; Verhagen, Constans A. H. H. V. M.; Jansen-Landheer, Marlies L. E. A.; Schers, Henk J.; Galesloot, Cilia; Vissers, Kris C. P.; Engels, Yvonne; Hasselaar, Jeroen G.J.

    2015-01-01

    Main Objective Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. Methods We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. Main Results and Their Significance Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51–2.12) or COPD (OR 1.39; 95% CI: 1.15–1.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22–1.40), agitation/delirium (OR 1.57; 95% CI: 1.47–1.68), exhaustion (OR 2.89; 95% CI: 2.61–3.20), euthanasia-related questions (OR 2.65; 95% CI: 2.37–2.96) or existential issues (OR 1.55; 95% CI: 1.31–1.83). Conclusion In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life. PMID:26301746

  1. 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

  2. The Palliative Care Movement in India: Another Freedom Struggle or a Silent Revolution?

    PubMed Central

    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’. PMID:20606849

  3. Impact of a home-based social welfare program on care for palliative patients in the Basque Country (SAIATU Program)

    PubMed Central

    2013-01-01

    Background SAIATU is a program of specially trained in-home social assistance and companionship which, since February 2011, has provided support to end-of-life patients, enabling the delivery of better clinical care by healthcare professionals in Osakidetza (Basque Health Service), in Guipúzcoa (Autonomous Community of the Basque Country). In January 2012, a retrospective observational study was carried out, with the aim of describing the characteristics of the service and determining if the new social service and the associated socio-health co-ordination had produced any effect on the use of healthcare resources by end-of-life patients. The results of a comparison of a cohort of cases and controls demonstrated evidence that the program could reduce the use of hospital resources and promote the continuation of living at home, increasing the home-based activity of primary care professionals. The objective of this study is to analyse whether a program of social intervention in palliative care (SAIATU) results in a reduction in the consumption of healthcare resources and cost by end-of-life patients and promotes a shift towards a more community-based model of care. Method/design Comparative prospective cohort study, with randomised selection of patients, which will systematically measure patient characteristics and their consumption of resources in the last 30 days of life, with and without the intervention of a social support team trained to provide in-home end-of-life care. For a sample of approximately 150 patients, data regarding the consumption of public healthcare resources, SAIATU activity, home hospitalisation teams, and palliative care will be recorded. Such data will also include information dealing with the socio-demographic and clinical characteristics of the patients and attending carers, as well as particular characteristics of patient outcomes (Karnofsky Index), and of the outcomes of palliative care received (Palliative Outcome Scale). Ethical approval for the study was given by the Clinical Research Ethics Committee of Euskadi (CREC-C) on 10 Dec 2012. Discussion The results of this prospective study will assist in verifying or disproving the hypothesis that the in-home social care offered by SAIATU improves the efficiency of healthcare resource usage by these patients (quality of life, symptom control). This project represents a dramatic advance with respect to other studies conducted to date, and demonstrates how, through the provision of personnel trained to provide social care for patients in the advanced stages of illness, and through strengthening the co-ordination of such social services with existing healthcare system resources, the resulting holistic structure obtains cost savings within the health system and improves the efficiency of the system as a whole. PMID:23363526

  4. 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...