Sample records for palliative care services

  1. Family Support Services in Pediatric Palliative Care

    Microsoft Academic Search

    Caprice A. Knapp; Nancy Contro

    2009-01-01

    A fundamental premise of pediatric palliative care is that support is provided not only to the ill child but to the family as well. In doing so, a number of services may be offered to family members throughout the child’s illness, at the time of death and into bereavement, such as respite, counseling, expressive therapies, and bereavement support. Support may

  2. Family support services in pediatric palliative care.

    PubMed

    Knapp, Caprice A; Contro, Nancy

    A fundamental premise of pediatric palliative care is that support is provided not only to the ill child but to the family as well. In doing so, a number of services may be offered to family members throughout the child's illness, at the time of death and into bereavement, such as respite, counseling, expressive therapies, and bereavement support. Support may also be needed for the child's peers at school, church, or on sporting teams. Evidence on family supportive care in pediatric palliative care research is scarce. The majority of existing studies are undertaken with bereaved parents. Although these studies are insightful, further information is needed to understand families' needs along the illness trajectory and to determine whether unmet needs exist. PMID:19837971

  3. Palliative Care

    MedlinePLUS

    ... are consistent with your personal values and beliefs. Palliative Care Basics Palliative means relieving or soothing symptoms without ... what is best for you and your child. Palliative Care Considerations Before you make a choice regarding palliative ...

  4. Palliative Care

    MedlinePLUS

    ... Patients and Families Take the Quiz What Is Palliative Care? Palliative care (pronounced pal-lee-uh-tiv) is specialized medical ... life for both the patient and the family. Palliative care is provided by a specially-trained team of ...

  5. Impact of Pain and Palliative Care Services on Patients

    PubMed Central

    Santha, S

    2011-01-01

    Background: Palliative care has become an emerging need of the day as the existing health-care facilities play only a limited role in the care of the chronically ill in the society. Patients with terminal illness in most cases spend their lives in the community among their family and neighbors, so there is the need for a multi disciplinary team for their constant care. Volunteers are primary care givers who originate normally from the same locality with local knowledge and good public contact through which they can make significant contributions in a team work by bridging the gap between the patient community and outside world. Aim: The present study has been undertaken to analyze the impact of palliative care services on patients by considering 51 variables. Materials and Methods: The respondents of the study include 50 pain and palliative care patients selected at random from 15 palliative care units functioning in Ernakulam district. The analysis was made by using statistical techniques viz. weighted average method, Chi-square test, Friedman repeated measures analysis of variance on ranks and percentages. Results: The study revealed that the major benefit of palliative care to the patients is the reduction of pain to a considerable extent, which was unbearable for them earlier. Second, the hope of patients could be maintained or strengthened through palliative care treatment. Conclusion: It is understood that the services of the doctors and nurses are to be improved further by making available their services to all the palliative care patients in a uniform manner. PMID:21633618

  6. 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

  7. 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

  8. 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 ...

  9. Palliative Care Education and

    E-print Network

    Goodrich, Lisa V.

    's Hospital Assistant Professor in Pediatrics, Harvard Medical School #12;Course Description Only 66-Director, Harvard Medical School Center for Palliative Care Professor of Psychiatry and Medicine, Harvard Medical Service, Massachusetts General Hospital Co-Director, Harvard Medical School Center for Palliative Care

  10. Physician reimbursement for critical care services integrating palliative care for patients who are critically ill.

    PubMed

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

    2012-03-01

    Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes. PMID:22396564

  11. 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

  12. The Program in Palliative Care

    E-print Network

    Datta, Sandeep Robert

    for Palliative Care Dana-Farber Cancer Institute, Department of Psychosocial Oncology and Palliative Care PROGRAM Institute Brigham and Women's Hospital PEDIATRIC TRACK DIRECTORS: Joanne Wolfe, MD, MPH Dana-Farber Cancer access to palliative care services. Program Components Now includes a special pediatric track The course

  13. The Benefits of a Hospital-Based Inpatient Palliative Care Consultation Service: Preliminary Outcome Data

    Microsoft Academic Search

    Sean O'Mahony; Arthur E. Blank; Leah Zallman; Peter A. Selwyn

    2005-01-01

    This report describes the multiple complementary analytic methods used to create a com- posite evaluation of the benefits of a hospital-based inpatient palliative care consultation ser- vice at Montefiore Medical Center in its preliminary phase. We evaluated data regarding 592 consecutive patients consulted by the palliative care service between November 2000, through March 2002. Standardized medical record reviews indicated that

  14. Palliative care and nursing.

    PubMed

    Soyannwo, O A

    2009-06-01

    Due to the changing pattern of disease and ageing population with chronic diseases, palliative care, a much neglected area of Medicine, has now become an important public health issue worldwide. Palliative care is applicable throughout the course of chronic life threatening illnesses and aims at reducing pain and suffering associated with these conditions. It provides pain and symptom control, psychosocial and spiritual support for patients and their families so that patients can enjoy the best quality of life till the end. Bereavement support is also provided following death and this encompasses care of orphans in conditions such as HIV/AIDS. Palliative care is provided by a team of multidisciplinary professionals (doctors, nurses, social workers etc) and volunteers working with patients and families in the hospital, home and hospices within the community. WHO policies on palliative care development contain the essential ingredients of Education, Drug Availability And Effective Government Policy. These are relevant for development of palliative care service and Research activities in Nigeria as clinicians, government officials and health educators can work together to achieve measurable outcomes. PMID:20229741

  15. Palliative Care in Cancer

    MedlinePLUS

    ... is receiving palliative care. Hospice care is a form of palliative care that is given to a ... technical language and specific details of laws and forms are hard to understand. To ease the burden, ...

  16. 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

  17. Navigation and palliative care.

    PubMed

    Hauser, Joshua; Sileo, Melissa; Araneta, Nicole; Kirk, Rachel; Martinez, Jeanne; Finn, Katie; Calista, Joanne; Calcano, Ercilia; Thibodaux, Lynda; Harney, Carol; Bass, Kelli; Rodrigue, Mary Kathryn

    2011-08-01

    Patient navigation represents an opportunity to further the integration of palliative care with standard cancer care. This article defines palliative and hospice care and describes some of the current challenges of integrating palliative care into other forms of care. It also considers outcomes that navigation might be expected to improve for patients receiving palliative care or enrolled in hospice. These outcomes include symptom relief; communication efficacy; transitions of care; and access to palliative care, hospice, and bereavement care for families. Although these outcomes may not have been specifically assessed in patients in cancer navigation programs, they represent important outcomes for patients receiving palliative care and their families. It is recognized that the types of outcomes that are important to track for patients and families receiving palliative care should be consistent with outcomes at other stages of illness. PMID:21780093

  18. Hospice and Palliative Care Development in Africa: A Multi-Method Review of Services and Experiences

    Microsoft Academic Search

    David Clark; Michael Wright; Jennifer Hunt; Thomas Lynch

    2007-01-01

    There is a paucity of information on hospice and palliative care provision in Africa and only a weak evidence base upon which to build policy and practice development. We set out to assess the current state of provision across the continent, mapping the existence of services country by country and exploring the perspectives and experiences of those involved. A multi-method

  19. Communication in the development of culturally competent palliative care services in the UK: a case study.

    PubMed

    Randhawa, Gurch; Owens, Alastair; Fitches, Rah; Khan, Zafar

    2003-01-01

    Research suggests that many minority ethnic patients who receive palliative care in the UK are satisfied with the service they are given. However, various studies have revealed that minority ethnic groups' experiences of care are far from perfect. The most significant problem for these patients centres on communication. This article presents some results from an exploratory study, commissioned by Luton Health Action Zone, to explore the role of communication in delivering effective palliative care services to South Asians living in Luton. Overall, it was found that the services provided are, in most cases, valued and seen as being effective. However, as the service providers who were interviewed readily recognized, there were areas where improvements could be made. The main issues were found to be the need to inform South Asian populations of the availability of palliative care services and the need to improve communication between patients and service providers. This article describes the communication problems that service providers and users face. It also identifies possible policy improvements aimed at developing the 'cultural competency' of services. PMID:12560794

  20. 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

  1. 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 ...

  2. 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

  3. e-Health in pediatric palliative care.

    PubMed

    Knapp, Caprice

    2010-02-01

    e-Health has the potential to improve pediatric palliative care. e-Health initiatives use the Internet or health information technology to improve quality of care and have the potential to decrease costs by reducing medical errors, reducing duplication of services, improving access to diagnostic and laboratory results, and improving communication between providers and patients, and so on. The majority of e-health initiatives are for adults and only a limited amount of evidence exists in the literature on e-health interventions in palliative care that are focused on pediatrics. To explore what role e-health could play in pediatric palliative care programs, this article aims to describe the Internet use in general in the United States and in palliative care, describe the use of health information technology in general in the United States and in palliative care, and suggest areas in pediatric palliative care that might benefit from e-health interventions. PMID:20124252

  4. 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

  5. Extending specialist palliative care to all?

    Microsoft Academic Search

    David Field; Julia Addington-Hall

    1999-01-01

    How to extend palliative care services to all patients needing them is an issue currently exercising a range of bodies in contemporary Britain. This paper first considers the evidence regarding the needs of dying patients with long term conditions other than cancer and concludes that there is evidence to support their presumed need for palliative care. It then considers five

  6. Pediatric palliative care

    Microsoft Academic Search

    Franca Benini; Marco Spizzichino; Manuela Trapanotto; Anna Ferrante

    2008-01-01

    The WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves\\u000a giving support to the family. Its purpose is to improve the quality of life of young patients and their families, and in the\\u000a vast majority of cases the home is the best place to provide such care, but for

  7. [Pastoral care in palliative medicine].

    PubMed

    Borck, S

    2006-11-01

    The orientation of life before death towards a quality as high as possible leads to an understanding of palliative medicine not as a pure medical discipline but rather as an integral approach of different disciplines, professions and services, combining several sectors and not being restricted to professionals. Within this change of patterns the pastoral care contribution is developed from professional clinical pastoral care, at first the pastoral care attitude in palliative medicine, challenged by the irritating expectation which dying and death every time demands of all involved. Basics of general mourning research and tasks of bereavement counselling are explained for elaboration as well as theological basics of a Christian human dignity concept. Different competence areas of pastoral care are linked to the dimensions of myth, ethos and rite. Finally a couple of tasks and challenges concerning interreligious cooperation, the cooperating with relatives and volunteers as well as structural questions of pastoral care are mentioned. PMID:17072509

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

    PubMed

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

    2014-09-01

    Palliative care is an emerging concept in the countries of the Gulf Cooperation Council, a political and economic union of Arab states bordering the Persian Gulf, namely Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates. Clinical pharmacy services have not yet been evaluated in this region. The objectives of this study were to create a baseline inventory of clinical pharmacy interventions in palliative care and to assess the perceived importance of interventions made. This was a prospective, single-center characterization study. Interventions were documented from September 30 to December 1, 2013. They were characterized into predetermined categories and analyzed using descriptive statistics. Physician acceptance rate and intervention rate per patient were calculated. Classification categories were sent to 10 practicing pharmacists in each of Qatar and Canada, who ranked the categories on the basis of perceived importance. A total of 96 interventions were documented, giving 3 interventions per patient and an acceptance rate of 81%. Discontinuing therapy (29%), initiating therapy (25%), and provision of education/counseling (13.5%) were most common. No differences were found between rankings from pharmacists in Qatar or Canada. Clinical pharmacy interventions are frequent, and those relating to alterations in drug therapy are most common. Interventions align with the perceived importance from pharmacists in both Qatar and Canada. PMID:25076019

  9. Improving Palliative Cancer Care

    PubMed Central

    Del Ferraro, Catherine; Ferrell, Betty; Van Zyl, Carin; Freeman, Bonnie; Klein, Linda

    2014-01-01

    Over a decade ago, the Institute of Medicine (IOM) presented Ensuring Quality Cancer Care in the United States, with recommendations for change (IOM, 1999). However, barriers to integrating palliative care (PC) to achieve high-quality care in cancer still remain. As novel therapeutic agents evolve, patients are living longer, and advanced cancer is now considered a chronic illness. In addition to complex symptom concerns, patients and family caregivers are burdened with psychological, social, and spiritual distress. Furthermore, data show that PC continues to be underutilized and inaccessible, and current innovative models of integrating PC into standard cancer care lack uniformity. The aim of this article is to address the existing barriers in implementing PC into our cancer care delivery system and discuss how the oncology advanced practice nurse plays an essential role in providing high-quality cancer care. We also review the IOM recommendations; highlight the work done by the National Consensus Project in promoting quality PC; and discuss a National Cancer Institute–funded program project currently conducted at a National Comprehensive Cancer Center, "Palliative Care for Quality of Life and Symptoms Concerns in Lung Cancer," which serves as a model to promote high-quality care for patients and their families.

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

    MedlinePLUS

    ... Questions Frequently Asked Questions 1. What is palliative care and when is it provided? Palliative care is ... Does my child have to be in hospice care to receive palliative care? No, your child does ...

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

    PubMed Central

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

    2013-01-01

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

  12. [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

  13. 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

  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. Advancing Palliative Care as a Human Right

    Microsoft Academic Search

    Liz Gwyther; Frank Brennan; Richard Harding

    2009-01-01

    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

  17. Incorporating palliative care into primary care education

    Microsoft Academic Search

    Susan D. Block; George M. Bernier; LaVera M. Crawley; Stuart Farber; David Kuhl; William Nelson; Joseph O’Donnell; Lewis Sandy; Wayne Ury

    1998-01-01

    Summary  The confluence of enhanced attention to primary care and palliative care education presents educators with an opportunity\\u000a to improve both (as well as patient care) through integrated teaching. Improvements in palliative care education will have\\u000a benefits for dying patients and their families, but will also extend to the care of many other primary care patients, including\\u000a geriatric patients and those

  18. Research Focus in Palliative Care

    PubMed Central

    Mohanti, Bidhu K

    2011-01-01

    This brief article on pre-conference CME topic ‘How to plan Research in Palliative Care’ is aimed to provide an overview of the background, concept, domains, present research activities and the future prospect for research opportunities. Advances in Palliative Care are made with a focus to address the quality of medical practice and ‘quality of death’, in those patients who have advanced stage diseases where cure may or may not be possible. The issues which can improve the palliative care delivery and the areas where evidence of practice is still weak can be identified by forming network and collaborative groups for the application of study and research methods in India. PMID:21811378

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

    PubMed Central

    2013-01-01

    Background Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings. PMID:23617814

  20. Health care interactional suffering in palliative care.

    PubMed

    Beng, Tan Seng; Guan, Ng Chong; Jane, Lim Ee; Chin, Loh Ee

    2014-05-01

    A secondary analysis of 2 qualitative studies was conducted to explore the experiences of suffering caused by interactions with health care providers in the hospital setting. Interview transcripts from 20 palliative care patients and 15 palliative care informal caregivers in University Malaya Medical Centre were thematically analyzed. The results of health care interactional suffering were associated with themes of attention, understanding, communication, competence, and limitation. These 5 themes may serve as a framework for the improvement in interaction skills of health care providers in palliative care. PMID:23689367

  1. PALLIATIVE CARE FOR PATIENTS WITH ADVANCED CANCER

    PubMed Central

    Gray, Alan; Ezzat, Adnan

    1997-01-01

    The increasing life expectancy in Saudi Arabia will be accompanied by an alteration of the patterns of disease similar to that in Western countries. One of these will be cancer, the second leading cause of death in the west at present, where 1:3 people develop cancer during their lifetime and 1:4 die of it. Cancer deaths are rarely easy. The distress particularly the pain it can cause is legendary. Palliative care is the care and study of patients with active progressive far advanced disease, where cure is impossible, the prognosis predictably short, and the focus of care is the patient's quality of life. A Palliative Care Program has been developed at KFSH&RC, since 1991. This has broadened the spectrum of health services available to cancer patients. Palliative care needs to be more widely available in the kingdom to relieve an important cause of human suffering. PMID:23008572

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

    PubMed

    da Silva, Karen Schein; Kruse, Maria Henriqueta Luce

    2009-06-01

    Palliative care is becoming a professional knowledge and performance field by means of the proposal of another "regimen of truths". Such fact can be observed in the broadening of palliative care services and in the increase of publications on the subject. This study aims at learning the discourses on palliative care that the nurses have conveyed in the nursing publications. For such purpose we approached the Cultural Studies, especially those inspired on Michel Foucault in order to analyze articles published in two national nursing periodicals from 1999 to 2007. Among the statements, we point out those that see the hospital as a site where the patient is divested of his individuality and identity and those that mention such care as capable of providing the family and the patient with the best quality of life possible during the death process. PMID:20027948

  3. 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 mak

  4. [About formation of actual comprehension of palliative care].

    PubMed

    Vvedenskaya, Ye S

    2013-01-01

    The article emphasizes that the palliative medical care is considered in the Federal law "On the fundamentals of health care of citizen in the Russian Federation" (2011)as one of the types of medical care of population. The Orders of delivery of palliative care to adult population and children are in the process of development to determine in perspective the formation of palliative care services in the regions. The successful development of this service needs a clear-cut definition of palliative care to formulate the corresponding tasks and contingents of patients. The Preference is to be given to the definition which considers palliative medical care as a medical care of patients with diagnosis of active incurable progressing disease at the stage when possibilities of specialized/radical treatment are exhausted or limited. PMID:24027844

  5. Palliative care in advanced dementia.

    PubMed

    Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth

    2014-08-01

    Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. PMID:25037291

  6. 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

  7. Palliative care in low- and medium-resource countries.

    PubMed

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

    2013-01-01

    Low- and medium-resource countries are facing a significant increase in the incidence of noncommunicable diseases such as cancer. Unfortunately, the majority of patients with cancer present with advanced disease, and disease-directed treatment may be unlikely to be effective and/or not available. Globally, there will be a growing need for palliative care services. There has been significant progress in the provision and integration of palliative care into the health care policy and systems. Nonetheless, palliative care services vary significantly between regions of the world and also between countries in the same region. Some common barriers to care include the lack of a trained workforce to provide palliative care, lack of availability of opioids or the restriction of their use, cultural attitudes of physicians and patients, and also funding. Despite these challenges, there are examples of low- and medium-resource countries that are providing excellent palliative care that is being integrated into the health care system and the cancer care continuum. This article provides an overview of the progress in providing palliative care in low- and medium-resource countries. In addition, more specific information is provided on palliative care in low-resource countries in Latin America, Asia, and Africa. Finally, a more personal perspective is presented on the development of palliative care in Ethiopia, as an example. PMID:24051614

  8. Efficiency of Searching the Grey Literature in Palliative Care

    Microsoft Academic Search

    Alison M Cook; Ilora G Finlay; Adrian G. K Edwards; Kerenza Hood; Irene J Higginson; Danielle M Goodwin; Charles E Normand; Hannah-Rose Douglas

    2001-01-01

    A systematic review into palliative care team effectiveness was undertaken which has, inherent in its methodology, grey literature searching. Over 100 letters were written to a systematically chosen range of service providers, commissioners, and experts in combination with requests for information in six UK national cancer\\/palliative care organization newsletters. In addition, the System for Information on Grey Literature (SIGLE )

  9. e-Health in Pediatric Palliative Care

    Microsoft Academic Search

    Caprice Knapp

    2010-01-01

    e-Health has the potential to improve pediatric palliative care. e-Health initiatives use the Internet or health information technology to improve quality of care and have the potential to decrease costs by reducing medical errors, reducing duplication of services, improving access to diagnostic and laboratory results, and improving communication between providers and patients, and so on. The majority of e-health initiatives

  10. Palliative care in adolescents and young adults with cancer.

    PubMed

    Pritchard, Sheila; Cuvelier, Geoff; Harlos, Mike; Barr, Ronald

    2011-05-15

    Adolescents and young adults (AYA) with advanced or terminal cancer have distinctive medical and psychosocial needs that may not have been adequately provided by either pediatric or adult palliative care services. A discussion group, as part of a larger workshop on AYA with cancer, was held in Toronto on March 11-13, 2010;117:-. Recommendations were as follows: Develop a specific AYA screening tool designed to detect increased anxiety or new symptoms and to initiate discussion about palliative or symptom care; Set Canadian standards for palliative care in AYA patients. These standards should be included in hospital accreditation; Involve the palliative/symptom care team early in the disease trajectory to help manage clinically important symptoms that may not be associated with imminent death; Establish specific AYA multidisciplinary palliative care teams throughout Canada that are flexible and can work in both pediatric and adult facilities, and are able to work in a "virtual" environment to support patients being cared for at home; Improve physical facilities in hospices and hospitals to meet the distinctive needs of terminally ill AYA patients; Enhance support for palliative care at home by: changing legislation to improve Compassionate Care Benefits and developing "virtual palliative care support teams". Adequate provision of AYA palliative care and symptom management services will likely confer notable benefits to AYA patients and their families, and is likely to be cost saving to the tax payer by avoiding prolonged hospitalization and promoting easier return to work for the families and caregivers. PMID:21523753

  11. Exhaustion syndrome in palliative care

    Microsoft Academic Search

    Wilson Astudillo; Carmen Mendinueta

    1996-01-01

    Exhaustion syndrome is a potential risk for palliative-care workers and families because of their special contact with suffering. In this article we review its manifestations, the ways it affects every member of the team and other carers. It is possible to prevent it through an early recognition of job stress and the developing of strategies of self-control. It can be

  12. End of life care: a discursive analysis of specialist palliative care nursing

    Microsoft Academic Search

    Julie K. Skilbeck; Sheila Payne

    2005-01-01

    End of life care: a discursive analysis of specialist palliative care nursing Aim. The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. Background.

  13. Spirituality, religion and palliative care.

    PubMed

    Richardson, Patrice

    2014-07-01

    As medical science has evolved, many conditions that once were thought to be "death sentences" have become chronic illness. In some ways, this makes death and dying more complicated, fraught with decisions about what care is appropriate and when to withhold or withdraw care. Studies have shown that most patients faced with life-threatening illness have spiritual needs that are not adequately addressed by their health care providers. The philosophy and practice of palliative care operates upon an understanding of whole person care, reflected in the muli-dimensional approach of the biopsychosocial model. One cannot provide whole-person care without giving consideration to the relevant spiritual needs held by patients with serious illness. As palliative care clinicians, we are uniquely positioned to work with teams/patients/families to explore the many variables that individuals and their families use as the guiding principles when making difficult decisions around end of life. While we are often consulted to manage physical symptoms, that is only part of our work. As we work on building relationships, both with our patients and their care team, we are often able to help facilitate communication that allows for mutually satisfactory goal setting. We are equipped to work with patients within their cultural contexts of which spirituality is a part. It is important to recognize the barriers to providing adequate spiritual care. The National Consensus Project has created clinical practice guidelines to provide a road map for the provision of quality palliative care. These guidelines delineate eight domains that are addressed through the provision of palliative care; the fifth domain gives attention to spiritual, religious and existential aspects of care. Guidelines recommend the use of standardized tools wherever possible to assess spiritual needs; referral to members of the interdisciplinary team who have specialized skills in addressing existential and spiritual concerns, and initiating contact and communication with community spiritual providers as requested by patients and their families. Palliative care providers are also called to be advocates for the spiritual and religious rituals of patients and families, especially at the time of death. PMID:25841692

  14. The use of palliative care services amongst end-stage kidney disease patients in an Irish tertiary referral centre

    PubMed Central

    Redahan, Lynn; Brady, Bernadette; Smyth, Andrew; Higgins, Stephen; Wall, Catherine

    2013-01-01

    Background Although patients with end-stage kidney disease (ESKD) have a shortened life expectancy, their end-of-life (EOL) care is suboptimal. The aim of this study was to review the utilization of specialist palliative care (SPC) in patients with ESKD in Dublin, Ireland. Methods We conducted a retrospective chart review of prevalent patients with ESKD who died between January 2005 and December 2009 at a tertiary referral centre. We recorded SPC referrals, modality of renal replacement therapy, age and place of death. Results Of 131 included patients, 88 (67.2%) were male, mean age at death was 63.2 ± 15.1 years and 102 (77.9%) were treated with haemodialysis. Forty-eight patients (36.7%) were referred to SPC, who were involved in the patients' management for a median of 12 days (range 0–907) before death. A total 104 patients (79.4%) died in an acute hospital, 19 (14.5%) died at home, 3 (2.3%) died in an inpatient hospice and the place of death was unknown for 5 patients (3.8%). Dialysis was withdrawn prior to death in 50 patients (38.1%), with a median time to death after withdrawal of dialysis of 6 days (0–105 days). A discussion regarding the withdrawal of dialysis was more frequently held with family member(s) rather than the patient. Conclusions SPC was involved in the antemortem care of ?1/3 of the patients with the majority of referrals placed at a late stage. Given the short timeframe until death once dialysis is withdrawn, it is imperative that appropriate EOL care is instituted. This study identifies an underutilization of SPC and improved integration of palliative care and nephrology services may optimize EOL care for patients with ESKD.

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

    PubMed

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

    2013-10-01

    The Israel Cancer Association has contributed, as a key player, to the establishment and upgrade of palliative care in Israel. The aim of this article is to describe the involvement and contribution of the ICA, as a volunteer organization, from a clinical, educational, legal, and organizational perspective. Another main goal of this survey is to shed light on the palliative care network in Israel, in each one of these infrastructures. PMID:23171783

  16. Palliative care in Canada: 1990.

    PubMed

    Ajemian, I C

    1990-01-01

    While there has been little change in numbers of programs across the country in the past four years, there does appear to have been an increase in the size of teams and in the variety of professional representation on teams, as well an increased number of programs with volunteers. The information suggests a certain consolidation of earlier efforts. Diversification of programs continues, with an increasing number of programs now in long-term care settings. Heidemann in 1986 raised the questions: What is quality palliative care? How do we know we are delivering quality palliative care? The questions continue to challenge us in 1990, as we continue to lack a set of standards against which to measure our efforts. PMID:1704914

  17. Palliative Care in Children With Cancer: Which Child and When?

    Microsoft Academic Search

    Michael B. Harris

    2004-01-01

    At a time of increasing interest in palliative care in pediat- rics, pediatric oncology programs may be failing to deliver adequate palliation to children with cancer. In a recent study, parents of children who died on a pediatric oncology service reported that despite treatment at the end of life, their children's suffering was not adequately relieved and that parents were

  18. Facilitating advance care planning in community palliative care: conversation starters across the client journey.

    PubMed

    Blackford, Jeanine; Street, Annette F

    2013-03-01

    This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations. PMID:23665571

  19. Building relationships through multi-disciplinary education in the North West Tasmania Rural Palliative Care Project

    Microsoft Academic Search

    Judi Walker; Heidi Behrens; Anita Dow

    Background This paper reports a multi-disciplinary educational intervention developed to improve palliative care delivery in a rural and remote area. The North West Rural Palliative Care Project commenced in 2004 on the North West Coast of Tasmania as a result of an innovative three-way partnership between the North West Tasmania Division of General Practice, Palliative Care Service North West and

  20. 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

  1. Ethical dilemmas in hospice and palliative care

    Microsoft Academic Search

    Barry M. Kinzbrunner

    1995-01-01

    In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or

  2. Palliative care in non-malignant disease

    Microsoft Academic Search

    Amy C. Gadoud; Miriam J. Johnson

    2011-01-01

    A lack of access to specialist palliative care (SPC) has led to a lack of clinicians’ skills, knowledge and attitudes pertinent to the management of patients with chronic conditions such as end-stage heart failure, chronic obstructive pulmonary disease (COPD) and renal failure. Recognition of the ‘end-stage’ remains a key challenge. This article discusses how a palliative care approach can be

  3. Palliative care in non-malignant disease

    Microsoft Academic Search

    M. S. Arolker; M. J. Johnson

    2008-01-01

    A lack of access to specialist palliative care (SPC) has led to a lack of clinicians’ skills, knowledge and attitudes pertinent to the management of patients with end-stage heart failure, chronic obstructive pulmonary disease (COPD) and renal failure. Recognition of the ‘end-stage’ itself remains a key challenge. This article discusses how a palliative care approach can be incorporated into standard

  4. Partnerships between pediatric palliative care and psychiatry.

    PubMed

    Knapp, Caprice; Madden, Vanessa; Button, Daniel; Brown, Rebecca; Hastie, Barbara

    2010-04-01

    Children with life-threatening illnesses and their families may face physical, emotional, psychosocial, and spiritual challenges throughout the children's course of illness. Pediatric palliative care is designed to meet such challenges. Given the psychosocial and emotional needs of children and their families it is clear that psychiatrists can, and do, play a role in delivering pediatric palliative care. In this article the partnership between pediatric palliative care and psychiatry is explored. The authors present an overview of pediatric palliative care followed by a summary of some of the roles for psychiatry. Two innovative pediatric palliative care programs that psychiatrists may or may not be aware of are described. Finally, some challenges that are faced in further developing this partnership and suggestions for future research are discussed. PMID:20478508

  5. Bereaved parents' perspectives on pediatric palliative care.

    PubMed

    Robert, Rhonda; Zhukovsky, Donna S; Mauricio, Riza; Gilmore, Katherine; Morrison, Shirley; Palos, Guadalupe R

    2012-01-01

    This study's goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their child's death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions. PMID:23194168

  6. 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

  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. [Introduction to palliative care for the oncologist-history and basic principles of palliative care].

    PubMed

    Shima, Yasuo

    2010-10-01

    The basic principle of palliative care has evolved over time and is the historical origin of the modern hospice. WHO proposed the first definition of palliative care in 1989, and the definition was revised in 2002. These definitions have something in common. Both relieve the pain and suffering to improve QOL. Palliative care is also good for any kind of life-threatening disease, regardless of whether it requires short or long term recuperation. That also need to be able to accept equally all the people of the community. The provision of general palliative care is the responsibility of all medical, nursing, and health professionals for the welfare of all patients with life-threatening disease. Specialist palliative care is based on the basic principles of palliative care, intensive clinical training, and systematic acquisition of knowledge and skills training to support palliative care education, clinical research and training provided by the profession. It has been established by nursing and medical experts in palliative care that palliative care can provide expertise in interdisciplinary teams in different settings. It is necessary that the medical system. PMID:20948245

  9. Evidence of improved quality of life with pediatric palliative care.

    PubMed

    O'Quinn, Lucy P; Giambra, Barbara K

    2014-01-01

    Pediatric nurses provide holistic family-centered care for children with life-limiting illnesses while being sensitive to children's growth and developmental needs. To learn how pediatric palliative care programs benefit children and their families, the following clinical question was asked: Among children with a life-limiting illness, does the use of a palliative care program compared with not using a palliative care program improve quality of life for patients and their families? Evidence from two studies found that palliative care services improve quality of life for children with life-limiting illness and their families in the areas of the child's emotional well-being and parental perception of preparation for the child's end of life, resulting in a low grade for the body of evidence. Future research should include high quality studies with larger sample sizes and control groups, and include children's perspectives--from both patients and siblings--to give a more complete picture of how best to improve their quality of life. A reliable tool is needed that includes a spiritual component and sensitive indicators specific to children with a life-limiting illness. Future research using this tool will more fully answer how palliative care services improve children's quality of life. PMID:25929123

  10. 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

  11. Annual Midwest Regional Palliative Care Conference Thursday, April 16, 2015

    E-print Network

    4th Annual Midwest Regional Palliative Care Conference Agenda Thursday, April 16, 2015 7:00 ­ 9 Peltier, MD, Director, MCW Palliative Care Center 8:25 ­ 9:40 Upstream/Early Intervention Palliative Care. Multiculturalism at End-Of-Life, Allyn Swan, M.Div. MAR B. Skin Issues in the Palliative Patient, Barbara Wilson

  12. 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

  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. Palliative care in Africa: a global challenge.

    PubMed

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

    2014-01-01

    We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said 'in the middle of difficulty lies opportunity' and this sentiment could not be more relevant to the development of palliative care programmes. Through advocacy, policy, and staunch commitment to compassion, Rwandan healthcare workers are proving how palliative care can be successfully integrated into a healthcare system. As a global healthcare community, we should be asking what opportunities exist to do this across the African continent. Champions of palliative care have a chance to forge lasting collaborations between international experts and African healthcare workers. This global network could not only advocate for palliative care programmes but it would also help to create a culture where palliative care is viewed as a necessary part of all healthcare systems. PMID:25624874

  15. 78 FR 53152 - Submission for OMB Review; Comment Request: Palliative Care: Conversations Matter Evaluation

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-08-28

    ...OMB Review; Comment Request: Palliative Care: Conversations Matter Evaluation...writing. Proposed Collection: Palliative Care: Conversations Matter Evaluation...Information Collection: NINR developed Palliative Care: Conversations Matter, a...

  16. 78 FR 35942 - Proposed Collection; Comment Request: Palliative Care: Conversations Matter Evaluation

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-14

    ...Collection; Comment Request: Palliative Care: Conversations Matter Evaluation...publication. Proposed Collection Palliative Care: Conversations Matter Evaluation -0925...Information Collection: NINR developed Palliative Care: Conversations Matter, a...

  17. Experiences, Knowledge, and Opinions on Palliative Care among Romanian General Practitioners

    PubMed Central

    Dumitrescu, Luminita; van den Heuvel, Wim J.A.; van den Heuvel-Olaroiu, Marinela

    2006-01-01

    Aim To assess experience, knowledge, and opinions of Romanian general practitioners (GPs) on palliative health care in Romania. Methods A questionnaire survey was performed among 1283 GPs in five districts of Romania in 2004. The data were collected on the GPs’ self-assessed experience in, knowledge of, and opinion on palliative care, entered into a database, and analyzed. The GPs were also asked to indicate if they needed to improve their knowledge about palliative care. Results The response rate was 71%. GPs mostly reported having limited experience in providing palliative care, with 24% reporting to have provided palliative care frequently, and 55% reporting to have it provided sometimes. Significant correlations were found between the GPs’ experience in palliative care provision and their age, sex, and place of work. The majority of Romanian GPs reported that their medical knowledge was inadequate for the provision of care to terminal patients at home. Over 80% of GPs agreed to develop palliative care services and to participate in a training program. Conclusion GPs in Romania reported to recognize the need for improvement of palliative care delivery in their country. They expressed the need for better knowledge of palliative care and agreed that multidisciplinary teams to provide palliative care at home would be the best form of delivering this type of health care. PMID:16489707

  18. [Neonatal palliative care and culture].

    PubMed

    Bétrémieux, P; Mannoni, C

    2013-09-01

    The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. PMID:23896086

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

    MedlinePLUS

    ... care? Anyone with a serious illness, regardless of life expectancy, can receive palliative care Someone with a serious illness and a life expectancy measured in months not years Can I continue ...

  20. Pediatric Palliative Care: A Reflection on Terminology

    PubMed Central

    Bergstraesser, Eva

    2013-01-01

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

  1. 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

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

    PubMed Central

    2010-01-01

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

  3. Perceptions and attitudes about hospice and palliative care among community-dwelling older adults.

    PubMed

    Manu, Erika; Mack-Biggs, Terri L; Vitale, Caroline A; Galecki, Andrej; Moore, Tisha; Montagnini, Marcos

    2013-03-01

    It is expected that the American geriatric population will have an increased need for hospice and palliative care services over the next few decades. We surveyed 187 community dwelling older adults about several aspects related to end-of-life (EOL) care. Participants were much more familiar with the term hospice than palliative care. In general, they had positive attitudes towards hospice and palliative care. Although experience caring for a dying relative was common, it wasn't associated with better attitudes towards hospice and palliative care or better familiarity with these terms. Familiarity with the term palliative care was associated with better attitudes towards EOL care. Our findings highlight the need for enhanced end-of-life care education among older adults, and reinforce the need for further research in this area. PMID:22556283

  4. 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

  5. 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

  6. The competencies required by professional hospice palliative care spiritual care providers.

    PubMed

    Cooper, Dan; Aherne, Michael; Pereira, José

    2010-07-01

    The Canadian Hospice Palliative Care Association (2002) identifies spiritual care of the dying and their families as a core service for Hospice Palliative Care programs. Yet, until the Spiritual Care Development Initiative of the Canadian Pallium Project, there was no published literature indicating systematic profiling of occupationally relevant core competencies or competency-based training programs specific to this specialized field of practice. This article describes a Canadian Community of Practice process to develop an occupational analysis-based competency profile for the Professional Hospice Palliative Care Spiritual Care Provider utilizing a modified Developing a Curriculum (DACUM) methodology. Competency profiles are important contributions to the development of curricula to train care providers who are recognized by other professions and by institutions as possessing the requisite theoretical and clinical expertise, particularly in academic tertiary care settings. PMID:20636158

  7. Measurement of psychological distress in palliative care.

    PubMed

    Kelly, Brian; McClement, Susan; Chochinov, Harvey Max

    2006-12-01

    Research investigating the psychological distress of palliative care patients has contributed to our understanding of the needs and experiences of individuals approaching death. This paper aims to provide a brief review of such measurement of psychological distress in palliative care, focusing on established psychiatric and psychological research tools, and quantitative research methods. This includes clinical screening and diagnostic assessment instruments used to identify key distress-related symptoms and the presence of common clinical syndromes, such as depression, anxiety, delirium, as well as the broader psychological dimensions of suffering, such as existential concerns, spirituality, hope and demoralisation. There are important considerations in undertaking psychological research in palliative care, such as maintaining a balance between the methods and measurements that will address key research questions, and sensitivity to the range of physical and emotional demands facing individuals at the point of receiving palliative care. The clinical application of psychological and psychiatric research tools and methods can aid the detection of psychological distress, aid the thorough assessment of the psychological dimension of the patients' illness and care, aid the identification of individuals who would benefit from specific psychotherapeutic or pharmacologic interventions, and the evaluation of response to treatments. PMID:17148532

  8. Changes in Medical and Nursing Care in Cancer Patients Transferred from a Palliative Care Team to a Palliative Care Unit

    Microsoft Academic Search

    Tatsuya Morita; Chizuru Imura; Koji Fujimoto; Hideki Shishido; Yo Tei; Satoshi Inoue

    2005-01-01

    The primary aim of this study was to explore the changes in medical\\/nursing care in patients who transferred from a palliative care team (PCT) to a palliative care unit (PCU) in the same hospital, and to explore the reasons why new or modified interventions were required. This was a retrospective study of 50 consecutive patients who were transferred from PCT

  9. Depression in palliative care: a pragmatic report from the Expert Working Group of the European Association for Palliative Care

    Microsoft Academic Search

    Friedrich Stiefel; Maria Die Trill; Alexandre Berney; Juan Olarte; Darius Razavi

    2001-01-01

    Our objective in this study was to summarize the relevant knowledge on depression in palliative care and to provide a framework for clinical, scientific and educational efforts at improving its management. The Research Steering Committee (RSC) of the European Association of Palliative Care (EAPC) established an Expert Working Group (EWG) to address the issue of depression in palliative care. Each

  10. The Palliative Care Advanced Practice Nurse

    Microsoft Academic Search

    Kim K. Kuebler

    2003-01-01

    The emerging role of the advanced practice nurse (APN) as a palliative care provider is gain- ing increased recognition in the United States. The APN' s ability to perform comprehensive physical evaluations, order and interpret diagnostics, and prescribe appropriate medications while receiving reimbursement allow this provider to become a valuable and important dis- cipline in the patient' s plan of

  11. [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

  12. 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

  13. Informed consent in palliative care clinical trials: challenging but possible.

    PubMed

    Agar, Meera; Ko, Danielle N; Sheehan, Caitlin; Chapman, Michael; Currow, David C

    2013-05-01

    Obtaining informed consent is a key protection that should be afforded universally to people using health services and the basis around which any participation in clinical trials is built. Randomized controlled effectiveness studies are necessary to answer key questions in hospice and palliative care, in order to help systematically improve the quality of care. In order to be properly generalizable, such trials need to have broad inclusion criteria to reflect the population most likely to be affected by the condition. The inclusion of patients who are seriously ill, and therefore potentially vulnerable, requires careful exploration of ethical and legal principles that underpin informed consent. Specific challenges in obtaining informed consent for randomised clinical trials (RCTs) in clinically unstable populations such as hospice and palliative care include higher rates of people with impaired cognitive capacity as well as interventional studies in clinical situations which may present as a sudden change in condition. None of these challenges is unique to hospice and palliative care research, but the combination and frequency with which they are encountered require systematic and considered solutions. This article outlines five different ethically valid consent approaches and discusses their applicability to hospice and palliative care research trials. These include: consent by the patient (at the time of enrolment, in advance of the study, or delayed until after the study has commenced); a proxy (or legally authorised representative); or a consent waiver. Increased use of the less traditional modes of informed consent may lead to greater participation rates in hospice and palliative care trials, thereby improving the evidence base more rapidly in part by better reflecting the population served and hence improving generalizability. PMID:23631612

  14. 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

  15. [Implementation of palliative care in Ivory Coast].

    PubMed

    Coulibaly, J Didi-Kouko; Datie, A-M; Binlin-Dadie, R; Kouame, I; N'guessan, Zc; Barouan, M-C; Koffi, E; Coulibaly, I; Mensah, J; Yenou, H Memain; Dedomey, E; Echimane, Ka; Plo, Kj; Kouassi, B

    2009-05-01

    Ivory Coast adhered to the strategy of the primary cares of health whose leading principles served basis to the definition of the National politics of sanitary development, exposed in the National plan of sanitary development 1996-2005. The improvement of the quality of the cares is the main objective of this plan. The attack of this objective cannot make itself without the hold in account of the palliative cares that are a component of the cares for the patients affected by chronic and incurable affections, since the diagnosis until the death and even after the death. Conscious of the necessity to develop the palliative cares to improve the quality of life of the patients and their families, the ministry in charge of health, in collaboration with the partners to the development, initiated a project of development of the palliative care in Ivory Coast. It is about an innovating gait in Ivory Coast concerning politics of health. This work has for goal to present the big lines and the setting in which this politics has been put in place. PMID:19423486

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

    PubMed Central

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

    2011-01-01

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

  17. 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

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

    PubMed

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

    2012-09-01

    Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units. PMID:22990428

  19. International recommendations for outpatient palliative care and prehospital palliative emergencies – a prospective questionnaire-based investigation

    PubMed Central

    2013-01-01

    Background To determine the international recommendations and current practices for the treatment and prevention of palliative emergencies. The primary goal of the study was to gather information from experts on their nationally practised concepts. Methods One hundred and fifty self-report surveys were distributed by email to selected leading experts (palliative and emergency medical care) in Europe, North and South America, Africa, Asia, and Australia. An expert in this context was defined as an author of an article that was ranked by three reviewers as relevant to outpatient palliative and emergency medical . Results The total response rate was 61% (n?=?92 experts). Survey responses were obtained from 35 different countries. The following standards in the treatment of palliative emergencies were recommended: (1) early integration of “Palliative Care Teams” (PCTs) and basic outpatient palliative care systems, (2) end-of-life discussions, (3) defined emergency medical documents, drug boxes, and “Do not attempt resuscitation” orders and (4) emergency medical training (physicians and paramedics). Conclusions This study detected structurally and nationally differences in outpatient palliative care regarding the treatment of palliative emergencies. Accordingly, these differences should be discussed and adapted to the respective specifications of individual single countries. A single established outpatient palliative emergency medical care concept may be the basis for an overall out-of-hospital palliative care system. PMID:23432905

  20. The impact of a palliative medicine consultation service in medical oncology

    Microsoft Academic Search

    Jade Homsi; Declan Walsh; Kristine A. Nelson; Susan B. LeGrand; Mellar Davis; Elias Khawam; Chadi Nouneh

    2002-01-01

    This prospective study of consecutive patients describes the palliative medicine consult service in a tertiary level cancer center and its impact on patient care. All inpatients\\/outpatients referred to the Palliative Medicine Program in a 4-month period were enrolled. Data were collected at the initial consultation using standardized forms with spaces for: reason for the consultation, referring service, demographics and history,

  1. Pediatric oncology palliative care in Israel.

    PubMed

    Yaniv, Isaac

    2012-03-01

    Pediatric Oncology in Israel has developed through the last 4 decades and currently outcome of children with cancer in Israel is similar to what is being achieved by international cooperative groups. Each year 450 children with cancer are being diagnosed and treated in specialized pediatric oncology centers. We describe the health care system and specifically focus on delay in diagnosis, late effects, palliative care and end of life issues. Finally we describe our achievements and list major challenges and future goals, in further improving patients care. PMID:22357150

  2. Late Effects of Treatment and Palliative Care

    Microsoft Academic Search

    Denah Taggart; Robert Goldsby; Anuradha Banerjee

    \\u000a Identifying late effects of treatment and integrating palliative care when appropriate, are increasingly recognized as important\\u000a elements of childhood tumor management. Patients with CNS tumors are at high risk for mortality, and survivors have high morbidity\\u000a rates related to the late effects of treatment. While intensified therapy has improved survival in patients with pediatric\\u000a brain tumors (Packer et al. 1999,

  3. [Anorexia-cachexia in palliative care].

    PubMed

    Capelas, Manuel Luís Vila

    2008-01-01

    The anorexia-cachexia syndrome jointly with asthenia are the problems more present in palliative care, but simultaneously also with larger difficulty of control. Being not possible an absolute correction of the problem, it is important to help the patient and the family to live and to face this reality better, with the proposal of concrete actions, duly explained and discussed, of easy application and which without a doubt happen in the increment of the comfort and the quality of life. PMID:19685611

  4. Palliative care in amyotrophic lateral sclerosis

    Microsoft Academic Search

    Gian Domenico Borasio; Raymond Voltz

    1997-01-01

    The poor prognosis of amyotrophic lateral sclerosis (ALS) makes palliative care a challenge for the neurologist. Most disabilities\\u000a associated with progressive disease can be ameliorated by symptomatic treatment. Prognosis and treatment options should be\\u000a openly discussed with the patient and his\\/her relatives. Nutritional deficiency due to pronounced dysphagia can be efficiently\\u000a relieved by a percutaneous enterogastrostomy. Respiratory insufficiency can be

  5. Research Priorities in Pediatric Palliative Care: A Delphi Study

    Microsoft Academic Search

    Rose Steele; Harvey Bosma; Meghan Fletcher Johnston; Susan Cadell; Betty Davies; Hal Siden; Lynn Straatman

    2008-01-01

    Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinents lines of research. Method:

  6. The development of palliative care in national government policy in England, 1986-2000.

    PubMed

    Mathew, Alison; Cowley, Sarah; Bliss, Julie; Thistlewood, Gillian

    2003-04-01

    Palliative care is an established and expanding speciality, important in many areas of service delivery within health and social services and the voluntary sector. Traditionally, palliative care is viewed as most closely linked to cancer services. National government policy has an inevitable impact on the organization and provision of such services. As part of a wider project, an investigation of the content and development of English government policy relating to palliative care was carried out. The development of policy follows a cycle that has no closure; it takes place within changing contexts, between multiple organizations and across sectors. Data collection involved the collation and close examination of policy documents and other documents that demonstrably influenced policy. This was in order to identify a national view of policy intentions for palliative care. In total, 53 policy documents were examined. The analysis revealed a number of pertinent issues relating to shifts in funding policies and an evolving definition of palliative care. There is an increasing recognition in the policy documents of the need for palliative care to extend beyond the traditional focus on cancer services and terminal illness. In tandem, is an increasing recognition of the need for partnership between sectors, reflected in more recent health and social services legislation. PMID:12725481

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

    PubMed Central

    2013-01-01

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

  8. A Comparative Review of Palliative Care Development in Six Countries Represented by the Middle East Cancer Consortium (MECC)

    Microsoft Academic Search

    Amanda Bingley; David Clark

    2009-01-01

    Palliative care development and services were reviewed in the region represented by the six members of the Middle East Cancer Consortium: Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey. The multimethod review synthesized evidence from ethnographic field visits to inpatient units, home care hospice teams and free-standing hospices, including interviews with hospice and palliative care clinicians, administrators, volunteers, policy

  9. Complementary and integrative medicine for older adults in palliative care.

    PubMed

    Leong, Madeline; Smith, Thomas J; Rowland-Seymour, Anastasia

    2015-05-01

    Complementary and Integrative Medicine (CIM) encompasses many diverse therapies, including natural products and mind and body practices. Use of CIM is common and can benefit patients in palliative care. However, because patients in palliative care are often frail and elderly, the clinician should consider a patient's comorbidities before recommending certain therapies, such as natural products. In this article, specific examples of CIM are provided for symptoms commonly seen in palliative care. PMID:25920054

  10. Dialysis Discontinuation and Palliative Care

    Microsoft Academic Search

    Lewis M. Cohen; Michael Germain; David M. Poppel; Anne Woods; Carl M. Kjellstrand

    2000-01-01

    Little attention has been accorded to the terminal course and end-of-life care of patients after dialysis discontinuation. This prospective cohort observational study involves six dialysis clinics in the United States and two clinics in Canada. Data were collected on 131 patients who were undergoing maintenance dialysis and died after treatment discontinuation. Seventy-nine of the patients (60%) were prospectively studied until

  11. 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

  12. An Exploratory Analysis of Pediatric Hospice and Palliative Care

    E-print Network

    Wang, Xiaorui "Ray"

    Research to date has focused on hospice organizations and questions about access to and cost of care for terminally-threatening conditions. Alexandria, VA: National Hospice and Palliative Care Organization. 2001. Institute of MAn Exploratory Analysis of Pediatric Hospice and Palliative Care Dialogue on Social Media Lisa C

  13. 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

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

    MedlinePLUS

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

  15. 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 ...

  16. 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

  17. Insights from the Northern Territory on factors that facilitate effective palliative care for Aboriginal peoples.

    PubMed

    McGrath, Pam D; Phillips, Emma L

    2009-11-01

    This article aims to assist remote communities to develop their own palliative care services by providing findings on successful strategies identified through a 2-year research project which developed an innovative model for Indigenous palliative care. The discussion is set in the context of an understanding of the notion of cultural safety and discusses the positive experiences of the benefits of palliative care from the perspectives of both consumers and health professionals. The findings show that successful outcomes are derived from generic factors associated with palliative care philosophy and practice and from more specific factors, including the provision of pragmatic support to overcome practical problems, and community visits by health professionals. Factors specific to cultural respect are important, including familiarity and continuity of health care providers, cultural respect for grieving practices, provision of comfort food and bush tucker, development of culturally appropriate built environments, use of traditional healers and respect for spiritual practices. PMID:20166913

  18. 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

  19. 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

  20. Drug Utilization Review on a Tertiary Palliative Care Unit

    Microsoft Academic Search

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

    2006-01-01

    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

  1. Palliative care volunteerism among college students in Canada

    Microsoft Academic Search

    Stephen Claxton-Oldfield; Jennifer Tomes; Michelle Brennan; Catherine Fawcett; Jane Claxton-Oldfield

    2005-01-01

    The goal of Study 1 was to investigate whether young Canadian adults were interested in becoming involved in palliative care volunteer work. After reading a brief description of what volunteering in a palliative care environment typically involves, participants (undergraduate students) were asked to indicate whether they would be interested in this kind of volunteer experience and to provide a written

  2. Kampo medicine for palliative care in Japan.

    PubMed

    Okumi, Hirokuni; Koyama, Atsuko

    2014-01-01

    Kampo medicines are currently manufactured under strict quality controls. The Ministry of Health, Labour and Welfare of Japan has approved 148 Kampo formulas. There is increasing evidence for the efficacy of Kampo medicines, and some are used clinically for palliative care in Japan. The specific aim of this review is to evaluate the clinical use of Kampo medicines in palliative care in the treatment of cancer. The conclusions are as follows: Juzentaihoto inhibits the progression of liver tumors in a dose-dependent manner and contributes to long-term survival. Hochuekkito has clinical effects on cachexia for genitourinary cancer and improves the QOL and immunological status of weak patients, such as postoperative patients. Daikenchuto increases intestinal motility and decreases the postoperative symptoms of patients with total gastrectomy with jejunal pouch interposition, suppresses postoperative inflammation following surgery for colorectal cancer, and controls radiation-induced enteritis. Rikkunshito contributes to the amelioration of anorectic conditions in cancer cachexia-anorexia syndrome. Goshajinkigan and Shakuyakukanzoto reduce the neurotoxicity of patients with colorectal cancer who undergo oxaliplatin and FOLFOX (5-fluorouracil/folinic acid plus oxaliplatin) therapy. Hangeshashinto has the effect of preventing and alleviating diarrhea induced by CPT-11(irinotecan) and combination therapy with S-1/CPT-11. O'rengedokuto significantly improves mucositis caused by anticancer agents. PMID:24447861

  3. Pediatric palliative care in the community.

    PubMed

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

    2015-07-01

    Answer questions and earn CME/CNE 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. CA Cancer J Clin 2015;65:315-333. © 2015 American Cancer Society. PMID:25955682

  4. Pressure ulceration and palliative care: prevention, treatment, policy and outcomes.

    PubMed

    Stephen-Haynes, Jackie

    2012-01-01

    Pressure ulcer development and management have particular significance in palliative and end-of-life care owing to the prevalence of mobility issues and the skin changes that can occur with ageing, chronic illness, and at the end of life. Hence, it is important for nurses working in palliative care to be vigilant for pressure ulcer development and to possess knowledge relating to the prevention and management of pressure ulceration. This article considers current UK policy regarding pressure ulcers, highlighting contradictions of relevance to patients requiring palliative care. It then provides a brief overview of pressure ulcer prevention, prescription, preservation, and palliation, highlighting areas of specific consideration to pressure ulcer care within palliative care. PMID:22306714

  5. [The main principles of concept of development of palliative care to children and adolescents].

    PubMed

    Viniarskaia, I V; Ustinova, N V; Baranov, A A; Albitskii, V Yu; Savva, N N; Krasko, O V; Kumirova, E V; Pritiko, A G

    2015-01-01

    The article substantiates actuality of elaboration of the concept of development of palliative care of children and adolescents. The analysis of legislative and normative legal base, international documents, scientific studies related to this issue are analyzed. The situation in the regions ofthe Russian Federation is examined concerning organization of palliative care of children and its forms, provision of pharmaceuticals and specialized equipment and professional training of specialists. The demand of children population in palliative care in Russia is calculated according data of 2012. The results of carried out study are used as a basis of determining measures of development of system of palliative care of children and adolescents in the Russian Federation to propose as a foundation for the National concept as a necessary condition for organization of effective and efficient service. PMID:26012280

  6. 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

  7. 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

  8. 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

  9. [Measuring quality of life in palliative care].

    PubMed

    Lopes Ferreira, Pedro; Pinto Barros, Ana; Barros Brito, Ana

    2008-01-01

    This paper describes the process followed to create and validate the Portuguese versión of a quality of life measurement instrument for patients in palliative care. After a literature review about the measurement of the quality of life in this particular and very specific kind of patients, we opt by the Irene Higginson's measurement instrument called Palliative Care Outcome Scale (POS). It has been selected as the one most appropriate to Portuguese patients' reality. For the creation of the Portuguese version we followed the recommended methodologies for the forward-backward translations. These methodologies allow us to determine semantic and linguistic equivalences of health outcomes measurement instruments. The validation was performed on a sample of 104 cancer patients aged between 40 and 85 years old. 70% were female, 29% had lung cancer, 46% breast cáncer and 22% had melanoma. Content validity was assured by two cognitive debriefing tests, respectively performed in oncologists and in patients. Construct validation allow us to find five ortogonal factors, including 'emotional well being' (19.7% of variance explained), 'consequences of the disease in life' (18.2%), 'received information and support' (11.7%), 'anxiety' (10.1%), and 'burden of illness' (9.8%). Criterion validity was tested by comparing the results obtained by POS to the ones obtained by the EORTC QLQ-C30, a genetic instrument especially designed for cancer patients. The found correlation values were moderated to strong and ranged from 0.51 to 0.63. The reliability of the Portuguese version was assured through the reproducibility test and the search for the internal consistency. The scores obtained by a one-week testrestest ranged from 0.66 to 1.00. Cronbach's alpha was 0.68, acceptable and allowing us to consider POS as a unique index Time responsiveness and diagnosis responsiveness were also analysed. Comparing values measured with a one-month interval showed sensibility to the lack of the quality of life felt by patients. This measurement instrument was also sensitive to the various pathologies. In conclusion, we may defend the quality of the performance of the Portuguese versión of the POS. This version may be used to prospectively assess the palliative care on advances cancer patients. PMID:18625090

  10. 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

  11. Emergency calls and need for emergency care in patients looked after by a palliative care team: Retrospective interview study with bereaved relatives

    Microsoft Academic Search

    Christoph HR Wiese; Andrea Vossen-Wellmann; Hannah C Morgenthal; Aron F Popov; Bernhard M Graf; Gerd G Hanekop

    2008-01-01

    BACKGROUND: During the last stage of life, palliative care patients often experience episodes of respiratory distress, bleeding, pain or seizures. In such situations, caregivers may call emergency medical services leading to unwanted hospital admissions. The study aims to show the influence of our palliative care team to reducing emergency calls by cancer patients or their relatives during the last six

  12. Strategies for Palliative Care in Advanced Colorectal Cancer

    Microsoft Academic Search

    Matthew R. Dixon; Michael J. Stamos

    2004-01-01

    Palliative care has appropriately been receiving increased attention in recent years. From the surgeon’s standpoint, therapy is considered palliative when resection of all known tumor sites is no longer possible or advisable. Since a cure, as commonly defined, is not possible, the goal of treatment and eventually the success of therapy becomes judged by the control of symptoms and alleviation

  13. Pediatric palliative care: using miniature chairs to facilitate communication.

    PubMed

    Chin, Loh Ee; Loong, Lam Chee; Ngen, Chin Cheuk; Beng, Tan Seng; Shireen, Chin; Kuan, Wong Sook; Shaw, Rosalie

    2014-12-01

    Good communication is essential but sometimes challenging in pediatric palliative care. We describe 3 cases whereby miniature chairs made of various materials and colors were used successfully to encourage communication among pediatric patients, family, and health care professionals. This chair-inspired model may serve as a simple tool to facilitate complex discussions and to enable self-expression by children in the pediatric palliative care setting. PMID:24150973

  14. Inequity in the provision of and access to palliative care for cancer patients. Results from the Italian survey of the dying of cancer (ISDOC)

    Microsoft Academic Search

    Monica Beccaro; Massimo Costantini; Domenico Franco Merlo

    2007-01-01

    BACKGROUND: The palliative services and programs have been developed with different intensity and modalities in all countries. Several studies have reported that a geographic variation in the availability and provision of palliative care services between and within countries exists, and that a number of vulnerable groups are excluded from these services. This survey estimates the distribution of places of care

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

    PubMed Central

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

    2014-01-01

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

  16. Bereavement needs assessment in specialist palliative care: a review of the literature.

    PubMed

    Agnew, A; Manktelow, R; Taylor, Bj; Jones, L

    2010-01-01

    Bereavement needs assessment for specialist palliative care services has been highlighted as important by NICE guidance on palliative care for adults with cancer. Identifying and implementing appropriate bereavement measurement tools has remained a challenge. This paper identifies and reviews bereavement measurement tools to determine their suitability for use within bereavement services and hospice settings. Cochrane, MEDLINE, PsycINFO and CINAHL, electronic databases were searched, yielding 486 papers. From fifty-nine full text papers appraised, 10 measurement tools were analysed in detail. Some tools had been tested on specific populations which limited transferability to specialist palliative care settings; some lacked adequate theoretical links and were not effective in discriminating between normal and complicated grief reactions; and some lacked clear evidence of validity or reliability. Based on these criteria, conclusions are drawn about the suitability of particular tools for UK bereavement services and hospice settings where intervention is delivered by both trained professionals and volunteers. PMID:19762368

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

    PubMed

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

    2009-03-01

    Home-based palliative care (hospice) services require comprehensive and fully integrated information systems to develop and manage the various aspects of their business, incorporating client data and management information. These systems assist in maintaining the quality of client care as well as improved management efficiencies. This article reports on a large not-for-profit home-based palliative care service in Australia, which embarked on a project to develop an electronic data management system specifically designed to meet the needs of the palliative care sector. This web-based client information management system represents a joint venture between the organization and a commercial company and has been a very successful project. PMID:19218311

  18. Palliative care for prison inmates: "don't let me die in prison".

    PubMed

    Linder, John F; Meyers, Frederick J

    2007-08-22

    The number of older inmates in US correctional facilities is increasing and with it the need for quality palliative health care services. Morbidity and mortality are high in this population. Palliative care in the correctional setting includes most of the challenges faced in the free-living community and several unique barriers to inmate care. Successful models of hospice care in prisons have been established and should be disseminated and evaluated. This article highlights why the changing demographics of prison populations necessitates hospice in this setting and highlights many of the barriers that correctional and consulting physicians face while providing palliative care. Issues specific to palliative care and hospice in prison include palliative care standards, inmate-physician and inmate-family relationships, confidentiality, interdisciplinary care, do-not-resuscitate orders and advance medical directives, medical parole, and the use of inmate volunteers in prison hospice programs. We also include practical recommendations to community-based physicians working with incarcerated or recently released prisoners and describe solutions that can be implemented on an individual and systems basis. PMID:17712073

  19. 77 FR 76053 - Proposed Collection; Comment Request; Pediatric Palliative Care Campaign Pilot Survey

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-12-26

    ...health care providers who recommend and provide palliative care to pediatric populations; (2) to better understand current perceptions, challenges, and information needs of health care providers when it comes to discussing pediatric palliative care so...

  20. The Role of Dentist in Palliative Care Team

    PubMed Central

    Mol, Rani P

    2010-01-01

    The palliative doctor gives the ‘touch of God’ as he/she takes care of the terminally ill patient. The oncologist encounters great difficulties in managing oral cavity problems of these patients. A trained dental doctor can help other doctors in dealing with these situations. But the general dental surgeon does not have enough idea about his part in these treatments. The community is also unaware of the role that a nearby dentist can play. Adequate training programs have to be conducted and awareness has to be created. A trained dentist will be a good team mate for the oncologist or radiotherapist or other doctors of the palliative care team. In this paper, a brief attempt is made to list a few areas in which a palliative care dentist can help other members of the palliative care team and also the patient in leading a better life. PMID:21811352

  1. 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

  2. Building on community assets to improve palliative and end-of-life care.

    PubMed

    Dobrof, Judith; Heyman, Janna C; Greenberg, Reva M

    2011-01-01

    In this article, the authors describe the development of a multidisciplinary, interfaith, grassroots community group of professionals and laypersons who have created a replicable model to enhance palliative and end-of-life care. The Collaborative for Palliative Care leverages existing community assets and capacities within the health and social service programs of Westchester County, New York, resulting in a unique public-private partnership. It has played a critical role in changing the culture of care for residents of Westchester who are faced with the challenges of serious and terminal illness. PMID:21391075

  3. Palliative care for cancer patients in Sudan: an overview

    PubMed Central

    Gafer, Nahla; Elhaj, Ahmed

    2014-01-01

    Sudan is facing an increasing number of cancer patients every year, and cancer is now among the top ten killer diseases in the country. The majority of cancer patients are diagnosed with an advanced type of cancer where curative treatment has little, if any, effect. The need for palliative care (PC) is urgent. In spite of this, there is no established programme for comprehensive cancer control in the country. In this article we review the state of PC services available for cancer patients. A PC service started in 2010 as an outpatient service at the main oncology centre in Sudan. With the help of international bodies, several training activities in PC were held. Currently the service includes an outpatient clinic, a nine-bed ward, and a limited home-care service. PC has started to reach two other hospitals in the country. Unfortunately, the need is still great; the services provided are not fully supported by the hospital administration. And even now, thousands of patients outside the cities of Khartoum and Medani have no access to oral morphine. PMID:25624872

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

    PubMed Central

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

    2012-01-01

    Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team. PMID:22203878

  5. Gynaecological Malignancies from Palliative Care Perspective

    PubMed Central

    Mishra, Kamlesh

    2011-01-01

    Of the approximately 80,000 new cases of all cancers detected every year in India, 10–15% are gynecological malignancies. As per population-based registries under the National Cancer Registry Program, the leading sites of cancer among women are the cervix uteri, breast, and oral cavity. About 50–60% of all cancers among women in India are mainly of the following four organs: cervix uteri, breast, corpus uteri, and ovaries. Over 70% of these women report for diagnostic and treatment services at an advanced stage of disease, resulting in poor survival and high mortality rates. Among all gynecological cancers, ovarian cancer is the deadliest one and, in 2/3rd of the cases, is detected in an advanced stage. But, in India and in other developing countries, due to inadequate screening facilities for the preventable cancer cervix, this kills more women than any other cancer in females. Gynecology Oncologist as a sub-specialist has an immensely important role in curtailing the menace of gynecological malignancies by providing comprehensive preventive, curative, palliative and follow-up services, with the aim of assuring a good quality of life to women as a cornerstone of cancer management. PMID:21811372

  6. Palliative care: experience with 156 cases in a general hospital.

    PubMed

    Khoo, S B

    2002-12-01

    The concept of Palliative Care is still quite new in Malaysia and there is a need to promote the awareness of its importance for patients with incurable and advanced illnesses, not only to the public but also to the nursing and medical professionals. These patients especially the poor ones very often have no one to turn to; they cannot afford to seek treatment from the private hospitals, they are turned away from acute General Hospitals and are told that there is nothing more to be done because their illnesses are no longer curable, they cannot pay for GPs to come to their homes, and there is difficulty in purchasing opiate drugs for pain relief. This is a retrospective observational study of the palliative care services we try to provide to those few patients referred to us. This study showed that out of the total of 156 patients, majority were Chinese, peak age between 50-59 years, referrals were mainly from the community and the Obstetrics + Gynaecology department, patients were referred rather late, 60% of patients died at home, most common malignancies being those of the breast, colorectal and cervix, common sites of metastases being the lungs, liver, bones, peritoneum and local infiltration, 87% of patients experienced pain, about 40% of patients were not fully aware of both diagnosis and prognosis, common drugs used being opiate analgesics followed by dexamethasone, H2 antagonist, antiemetics and NSAID. PMID:12733165

  7. Palliative care research: trading ethics for an evidence base

    PubMed Central

    Jubb, A

    2002-01-01

    Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly apportion finite resources. Nevertheless, the potential of palliative care is still held back by a paucity of good evidence. These circumstances are largely attributable to perceived ethical challenges that allegedly distinguish dying patients as a special client class. In addition, practical limitations compromise the quality of evidence that can be obtained from empirical research on terminally ill subjects. This critique aims to appraise the need for focused research, in order to develop clinical and policy decisions that will guide health care professionals in their care of dying patients. Weighted against this need are tenets that value the practical and ethical challenges of palliative care research as unique and insurmountable. The review concludes that, provided investigators compassionately apply ethical principles to their work, there is no justification for not endeavouring to improve the quality of palliative care through research. PMID:12468651

  8. Regional Variations in Palliative Care: Do Cardiologists Follow Guidelines?

    PubMed Central

    Peterson, Pamela N.; Sirovich, Brenda E.; Wennberg, David E.; Gallagher, Patricia M.; Lucas, F. Lee

    2010-01-01

    Abstract Objectives Regional variation in health care use in the last 6 months of life is well documented. Our objective was to examine whether an association exists between cardiologists' tendencies to discuss palliative care for patients with advanced heart failure and the regional use of health care in the last 6 months of life. Methods We performed a national mail survey of a random sample of 994 eligible Cardiologists from the American Medical Association Masterfile. Hypothetical patient scenarios were used to explore physician management of patient scenarios. Results We received 614 responses (response rate: 62%). In a 75-year-old with symptomatic chronic heart failure and asymptomatic nonsustained ventricular tachycardia, cardiologists in regions with high use in the last 6 months of life were less likely to have discussions about palliative care (23% versus 32% for comparisons between the highest and lowest quintiles, p?=?0.04). Similarly, in an 85 year-old with symptomatic chronic heart failure and an acute exacerbation, cardiologists in high use regions were less likely to have discussions about palliative care (35% versus 47%, p?=?0.0008). Conclusions Despite professional guidelines suggesting that cardiologists discuss palliative care with patients with late stage heart failure, less than half of cardiologists would discuss palliative care in two elderly patients with late-stage heart failure and this guideline discordance was worse in the regions with more health care use in the last 6 months of life. PMID:20954826

  9. Public health and palliative care: principles into practice?

    Microsoft Academic Search

    Steve Conway

    2008-01-01

    Public health approaches to palliative care have a valuable contribution to make in understanding and developing community capacity related to death, dying, loss and care, acknowledging that carers of the dying and bereaved are an important group who have their own significant needs in end-of-life care. Drawing upon a sociological framework, this article suggests that an even greater contribution is

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

    PubMed Central

    2011-01-01

    Background While the home is the most common setting for the provision of palliative care in Australia, a common problem encountered here is the inability of patient/carers to manage medications, which can lead to misadventure and hospitalisation. This can be averted through detection and resolution of drug related problems (DRPs) by a pharmacist; however, they are rarely included as members of the palliative care team. The aim of this study was to pilot a model of care that supports the role of a pharmacist in a community palliative care team. A component of the study was to develop a cost-effective model for continuing the inclusion of a pharmacist within a community palliative care service. Methods The study was undertaken (February March 2009-June 2010) in three phases. Development (Phase 1) involved a literature review; scoping the pharmacist's role; creating tools for recording DRPs and interventions, a communication and education strategy, a care pathway and evidence based patient information. These were then implemented in Phase 2. Evaluation (Phase 3) of the impact of the pharmacist's role from the perspectives of team members was undertaken using an online survey and focus group. Impact on clinical outcomes was determined by the number of patients screened to assess their risk of medication misadventure, as well as the number of medication reviews and interventions performed to resolve DRPs. Results The pharmacist screened most patients (88.4%, 373/422) referred to the palliative care service to assess their risk of medication misadventure, and undertook 52 home visits. Medication reviews were commonly conducted at the majority of home visits (88%, 46/52), and a variety of DRPs (113) were detected at this point, the most common being "patient requests drug information" (25%, 28/113) and "condition not adequately treated" (22%, 25/113). The pharmacist made 120 recommendations in relation to her interventions. Fifty percent of online survey respondents (10/20) had interacted 10 or more times with the pharmacist for advice. All felt that the pharmacist's role was helpful, improving their knowledge of the different medications used in palliative care. The six team members who participated in the focus group indicated that there were several benefits of the pharmacist's contributions towards medication screening and review. Conclusions The inclusion of a pharmacist in a community palliative care team lead to an increase in the medication-related knowledge and skills of its members, improved patients' medication management, and minimised related errors. The model of care created can potentially be duplicated by other palliative care services, although its cost-effectiveness was unable to be accurately tested within the study. PMID:22035160

  11. 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

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

    PubMed

    Carter, Brian S; Swan, Rebecca

    2012-08-01

    A 1-day training event for pediatric residents with interdisciplinary staff was held, which was modeled after the Initiative for Pediatric Palliative Care (IPPC). Training included relational communication, cultural humility, pain-symptom management, family-centered care, team problem solving, and strategic planning using didactic, small group, and plenary platforms. Two bereaved parents were co-learners and trainers. Twenty-six interdisciplinary staff participated. A positive impact was measured in new knowledge gained, value in collaborative learning with health care professionals and families, and ability to work with professionals outside participants' own unit. Confidence to advocate for improved pediatric palliative care was also noted. The IPPC curriculum is easily adapted for resident education. Incorporating family members as co-learners and teachers is valuable. Advocacy for pediatric palliative care may follow this type of experience. PMID:22057208

  13. Creating social work competencies for practice in hospice palliative care.

    PubMed

    Bosma, Harvey; Johnston, Meaghen; Cadell, Susan; Wainwright, Wendy; Abernethy, Ngaire; Feron, Andrew; Kelley, Mary Lou; Nelson, Fred

    2010-01-01

    Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care. Despite the prominent and longstanding position of social work in this area, the role and functions of social workers had not been clearly defined. A Canadian task group of social work practitioners and educators utilized a modified Delphi process to consult front line clinicians nationally, and thereby achieved consensus regarding the identification and description of eleven core competencies in Hospice Palliative Care. These competencies are relevant for social workers at different experience levels across care settings. They can be used to inform social work practice, as well as professional development and educational curricula in this area. PMID:19843621

  14. The case for home based telehealth in pediatric palliative care: a systematic review

    PubMed Central

    2013-01-01

    Background Over the last decade technology has rapidly changed the ability to provide home telehealth services. At the same time, pediatric palliative care has developed as a small, but distinct speciality. Understanding the experiences of providing home telehealth services in pediatric palliative care is therefore important. Methods A literature review was undertaken to identify and critically appraise published work relevant to the area. Studies were identified by searching the electronic databases Medline, CINAHL and Google Scholar. The reference list of each paper was also inspected to identify any further studies. Results There were 33 studies that met the inclusion criteria of which only six were pediatric focussed. Outcome measures included effects on quality of life and anxiety, substitution of home visits, economic factors, barriers, feasibility, acceptability, satisfaction and readiness for telehealth. While studies generally identified benefits of using home telehealth in palliative care, the utilisation of home telehealth programs was limited by numerous challenges. Conclusion Research in this area is challenging; ethical issues and logistical factors such as recruitment and attrition because of patient death make determining effectiveness of telehealth interventions difficult. Future research in home telehealth for the pediatric palliative care population should focus on the factors that influence acceptance of telehealth applications, including goals of care, access to alternative modes of care, perceived need for care, and comfort with using technology. PMID:23374676

  15. A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC).

    PubMed

    Bingley, Amanda; Clark, David

    2009-03-01

    Palliative care development and services were reviewed in the region represented by the six members of the Middle East Cancer Consortium: Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey. The multimethod review synthesized evidence from ethnographic field visits to inpatient units, home care hospice teams and free-standing hospices, including interviews with hospice and palliative care clinicians, administrators, volunteers, policy makers and academic researchers. Public health data and relevant literature were collated together with internet-accessed information on services and health care systems. A total of 69 services were located; two country members have a history of relatively sustained development of hospice and palliative care, but provision across the Middle East Cancer Consortium region is highly variable at a local level. Considerable barriers to service development were identified in a region already struggling with many military and political conflicts. Key problems are a lack of secure funds and government support, inadequate professional training programs, opioid phobia in professionals and the public, and a lack of awareness and understanding of palliative care needs at public, government, and professional levels. Key areas for further attention were increasing national and international professional training and public education programs, improving opioid legislation and health care policies, negotiating for secure government or health insurance funding provision, raising awareness about the need for pediatric services and for patients with other illnesses, as well as for those with cancer, and working to integrate palliative care into mainstream health service provision and education. PMID:18823750

  16. Identifying Key Priorities for Future Palliative Care Research Using an Innovative Analytic Approach

    PubMed Central

    Riffin, Catherine; Pillemer, Karl; Chen, Emily K.; Warmington, Marcus; Adelman, Ronald D.; Reid, M. C.

    2015-01-01

    Using an innovative approach, we identified research priorities in palliative care to guide future research initiatives. We searched 7databases (2005–2012) for review articles published on the topics of palliative and hospice–end-of-life care. The identified research recommendations (n = 648) fell into 2 distinct categories: (1) ways to improve methodological approaches and (2) specific topic areas in need of future study. The most commonly cited priority within the theme of methodological approaches was the need for enhanced rigor. Specific topics in need of future study included perspectives and needs of patients, relatives, and providers; underrepresented populations; decision-making; cost-effectiveness; provider education; spirituality; service use; and inter-disciplinary approaches to delivering palliative care. This review underscores the need for additional research on specific topics and methodologically rigorous research to inform health policy and practice. PMID:25393169

  17. The ethics of palliative care and euthanasia: exploring common values.

    PubMed

    Hurst, Samia A; Mauron, Alex

    2006-03-01

    The ethical underpinnings of palliative care and those of voluntary euthanasia and assisted suicide (VE/AS) are often viewed as opposites. In this article, we review the values held in common by the euthanasia legalization movement and palliative care providers. Outlining this common ground serves to define, with greater clarity, the issues on which differences do exist, and ways in which some open questions, which are as yet unresolved, could be approached. Open discussion between VE/AS legalization advocates and palliative care providers is important to address these open questions seriously, and to enrich the care of terminally ill patients by giving members of both groups access to each other's experience. PMID:16613406

  18. 78 FR 15958 - Submission for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-13

    ...30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey SUMMARY...Proposed Collection: Pediatric Palliative Care Campaign Pilot Survey, [[Page...NINR developed a Pediatric Palliative Care Campaign to address the...

  19. 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

  20. 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

  1. Paediatric Palliative Care Research in Canada: Development and Progress of a New Emerging Team

    Microsoft Academic Search

    Lynn Straatman; Susan Cadell; Betty Davies; Harold Siden; Rose Steele

    2008-01-01

    Paediatric pallative care is a field distinct from adult palliative care, although there are many overlaps in language, approach and philosophy. Several features, however, distinguish paediatric palliative care. The illnesses that affect children are different from those that are most predominant in the adult population. In addition, the role and involvement of the family, while always important in palliative care

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

    MedlinePLUS

    ... Families Take the Quiz Step 3: Meet the Palliative Care Team The palliative care team will spend a lot of time with ... are some suggestions: What can I expect from palliative care? Where will my care be provided (e.g., ...

  3. 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

  4. Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence

    PubMed Central

    Harding, R; Karus, D; Easterbrook, P; Raveis, V; Higginson, I; Marconi, K

    2005-01-01

    Background: The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era. PMID:15681714

  5. Integrating palliative care with intensive care for critically ill patients with lung cancer

    PubMed Central

    2012-01-01

    With newer information indicating more favorable outcomes of intensive care therapy for lung cancer patients, intensivists increasingly are willing to initiate an aggressive trial of this therapy. Concerns remain, however, that the experience of the intensive care unit for patients with lung cancer and their families often may be distressing. Regardless of prognosis, all patients with critical illness should receive high-quality palliative care, including symptom control, communication about appropriate care goals, and support for both patient and family throughout the illness trajectory. In this article, we suggest strategies for integrating palliative care with intensive care for critically ill lung cancer patients. We address assessment and management of symptoms, knowledge and skill needed for effective communication, and interdisciplinary collaboration for patient and family support. We review the role of expert consultants in providing palliative care in the intensive care unit, while highlighting the responsibility of all critical care clinicians to address basic palliative care needs of patients and their families. PMID:22339793

  6. Integrating palliative care with intensive care for critically ill patients with lung cancer.

    PubMed

    Gay, Elizabeth B; Weiss, Stefanie P; Nelson, Judith E

    2012-01-01

    With newer information indicating more favorable outcomes of intensive care therapy for lung cancer patients, intensivists increasingly are willing to initiate an aggressive trial of this therapy. Concerns remain, however, that the experience of the intensive care unit for patients with lung cancer and their families often may be distressing. Regardless of prognosis, all patients with critical illness should receive high-quality palliative care, including symptom control, communication about appropriate care goals, and support for both patient and family throughout the illness trajectory. In this article, we suggest strategies for integrating palliative care with intensive care for critically ill lung cancer patients. We address assessment and management of symptoms, knowledge and skill needed for effective communication, and interdisciplinary collaboration for patient and family support. We review the role of expert consultants in providing palliative care in the intensive care unit, while highlighting the responsibility of all critical care clinicians to address basic palliative care needs of patients and their families. PMID:22339793

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

    PubMed

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

    2014-12-01

    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 ($1.00CDN = $1.00USD). 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

  8. The feasibility of using technology to enhance the transition of palliative care for rural patients.

    PubMed

    Holland, Diane E; Vanderboom, Catherine E; Ingram, Cory J; Dose, Ann Marie; Borkenhagen, Lynn S; Skadahl, Phyllis; Pacyna, Joel E; Austin, Christine M; Bowles, Kathryn H

    2014-06-01

    Palliative care services for patients with life-limiting conditions enhance their quality of life. Most palliative care services, however, are located in hospitals with limited transitional care for patients who live in distant locations. The long-term goal of this program of research is to use existing technology for virtual visits to provide transitional care for patients initially hospitalized in an urban setting by a nurse practitioner located closer to patients' homes in distant, rural settings. The purpose of this proof-of-concept study was to determine the resources needed to use the system (efficiency) and the quality of the audio and visual components (effectiveness) to conduct virtual visits between a clinician at an academic center and community-dwelling adults living in rural locations. Guided by the Technology Acceptance Model, a mixed-methods field design was used. Because of the burden of testing technology with patients with life-limiting conditions, the sample included eight healthy adults. Participant satisfaction and perceptions of the ease of using the technology were also measured. Virtual visits were conducted using a 3G-enabled Apple iPad, cellular phone data service, and a Web-based video conference service. Participants and clinicians perceived the technology as easy to use. Observations revealed the importance of the visual cues provided by the technology to enhance communication, engagement, and satisfaction. Findings from this study will inform a subsequent study of technology-enhanced transitional care with palliative care patients. PMID:24814998

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

    PubMed Central

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

    2012-01-01

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

  10. Just palliative care: responding responsibly to the suffering of the poor.

    PubMed

    Krakauer, Eric L

    2008-11-01

    The disproportionate suffering of the world's poor from AIDS and cancer has generated efforts to promote palliative care as an affordable alternative to expensive disease-modifying therapies. These well-intentioned efforts stem from a wish to respond to the suffering of the poor as quickly and widely as possible and from the view that only inexpensive interventions are feasible in poor settings. Such efforts also may be informed by the cautious attitude of palliative care in rich countries toward disease-modifying treatments for patients with advanced life-threatening illnesses. Yet, acceptance of unequal access for the poor to life-saving medical services that are badly needed and potentially feasible is unjust. Although palliative interventions to relieve the disproportionate physical, psychological, and social suffering of the poor are essential, they should be integrated with preventive and disease-modifying interventions for major killers, such as acquired immunodeficiency syndrome and cancer. PMID:18971074

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

    PubMed Central

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

    2011-01-01

    Nausea and vomiting are portrayed in the specialist palliative care literature as common and distressing symptoms affecting the majority of patients with advanced cancer and other life-limiting illnesses. However, recent surveys indicate that these symptoms may be less common and bothersome than has previously been reported. The standard palliative care approach to the assessment and treatment of nausea and vomiting is based on determining the cause and then relating this back to the “emetic pathway” before prescribing drugs such as dopamine antagonists, antihistamines, and anticholinergic agents which block neurotransmitters at different sites along the pathway. However, the evidence base for the effectiveness of this approach is meager, and may be in part because relevance of the neuropharmacology of the emetic pathway to palliative care patients is limited. Many palliative care patients are over the age of 65 years, making these agents difficult to use. Greater awareness of drug interactions and QTc prolongation are emerging concerns for all age groups. The selective serotonin receptor antagonists are the safest antiemetics, but are not used first-line in many countries because there is very little scientific rationale or clinical evidence to support their use outside the licensed indications. Cannabinoids may have an increasing role. Advances in interventional gastroenterology are increasing the options for nonpharmacological management. Despite these emerging issues, the approach to nausea and vomiting developed within palliative medicine over the past 40 years remains relevant. It advocates careful clinical evaluation of the symptom and the person suffering it, and an understanding of the clinical pharmacology of medicines that are available for palliating them. PMID:21966219

  12. What is case management in palliative care? An expert panel study

    PubMed Central

    2012-01-01

    Background Case management is a heterogeneous concept of care that consists of assessment, planning, implementing, coordinating, monitoring, and evaluating the options and services required to meet the client's health and service needs. This paper describes the result of an expert panel procedure to gain insight into the aims and characteristics of case management in palliative care in the Netherlands. Methods A modified version of the RAND®/University of California at Los Angeles (UCLA) appropriateness method was used to formulate and rate a list of aims and characteristics of case management in palliative care. A total of 76 health care professionals, researchers and policy makers were invited to join the expert panel, of which 61% participated in at least one round. Results Nine out of ten aims of case management were met with agreement. The most important areas of disagreement with regard to characteristics of case management were hands-on nursing care by the case manager, target group of case management, performance of other tasks besides case management and accessibility of the case manager. Conclusions Although aims are agreed upon, case management in palliative care shows a high level of variability in implementation choices. Case management should aim at maintaining continuity of care to ensure that patients and those close to them experience care as personalised, coherent and consistent. PMID:22709349

  13. Issues and innovations in nursing practice: Palliative care for patients with cancer: district nurses' experiences

    Microsoft Academic Search

    K Dunne; K A Sullivan; G Kernohan

    2005-01-01

    Aim. This paper reports a study exploring district nurses' experiences of providing palliative care for patients with cancer and their families. Background. There is an increasing demand for palliative care in the community, as many patients wish to die at home. District nurses are central to providing palliative care in the community, but there is a dearth of literature on

  14. pediatric palliative care at boston college How do you meet the needs of

    E-print Network

    Huang, Jianyu

    (DHHS) under grant number D09HP07456 and title Advanced Education Nursing Grants. The information-limiting illnesses? As a pediatric palliative care nurse, you will deliver innovative nursing interventions and treat: Palliative Care and the Advanced Practice Nursing Role NU 647 Palliative Care III: Pediatric Practicum

  15. The Asia Pacific Hospice Palliative Care Network: Supporting Individuals and Developing Organizations

    Microsoft Academic Search

    Cynthia R. Goh

    2007-01-01

    The Asia Pacific Hospice Palliative Care Network is a network of individuals and organizations involved in hospice and palliative care in Asia and the Pacific. It currently has 938 members in 28 countries, of whom 793 are individual members and 145 are organizations. Since its formation in 2001, its chief activities are the support of individuals working in palliative care

  16. What influences participation in clinical trials in palliative care in a cancer centre?

    Microsoft Academic Search

    J Ling; E Rees; J Hardy

    2000-01-01

    Like any other speciality, palliative care needs a scientific foundation on which to base its practice. Research in palliative care is particularly difficult because of the characteristics of the patient population under study (e.g. advanced disease, poor performance status and limited prognosis). The aim of this paper was to highlight the challenges of recruitment into clinical trials in palliative care.

  17. 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

  18. Family Perspectives on the Quality of Pediatric Palliative Care

    Microsoft Academic Search

    Nancy Contro; Judith Larson; Sarah Scofield; Barbara Sourkes; Harvey Cohen

    2002-01-01

    Background: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of de- ceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medi- cal Center, Palo Alto, Calif. Methods: Sixty-eight

  19. 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

  20. West Virginia Palliative Care Network 2011 Audio Conference Series

    E-print Network

    Mohaghegh, Shahab

    Palliative Care Joshua Dower, MD, West Virginia University School of Medicine Course Credits This activity. The WVU Office of CME designates this live activity for a maximum of 3 AMA PRA Category 1 Credits TM . Physicians should claim only credit commensurate with the extent of their participation in the activity. One

  1. Pain, music creativity and music therapy in palliative care

    Microsoft Academic Search

    Clare C. O’Callaghan

    1996-01-01

    An analysis of the music therapy literature yields numerous reports to support the role of music in the alleviation of pain in palliative care. Four theoretical perspectives that support why many patients report reduced pain sensation after music therapy include: the psychological relationship between music and pain; the psychophysiological theory; spinal mechanisms involved in pain modulation; and the role of

  2. The Internet as a Resource for Palliative Care and Hospice

    Microsoft Academic Search

    1998-01-01

    The last 3 years have witnessed an enormous growth and utilization of the Internet and its graphical subdivision, the World Wide Web (WWW). Its medical applications offer numerous advantages and strengths, including ease of publication and access to large volumes of information. This paper explores the potential applications of the Internet and the WWW for palliative care and hospice. It

  3. 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; examine the effects of cancer and its treatment on quality of life; and examine psychosocial issues and treatment strategies at the end of life.

  4. 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…

  5. Patterns of care and course of symptoms in palliative radiotherapy

    Microsoft Academic Search

    Birgitt van Oorschot; Michael Schuler; Anke Simon; Ursula Schleicher; Hans Geinitz

    Background and Purpose  To evaluate patterns of care as well as effectiveness and side effects of palliative treatment in four German radiation oncology\\u000a departments.\\u000a \\u000a \\u000a \\u000a \\u000a Patients and Methods  All referrals in four German radiation oncology departments (two university hospitals, one academic hospital, one private\\u000a practice) were prospective documented for 1 month in 2008 (2 months at one of the university hospitals). In palliatively

  6. Communication as a core skill of palliative surgical care.

    PubMed

    Miner, Thomas J

    2012-03-01

    Excellence as a surgeon requires not only the technical and intellectual ability to effectively take care of surgical disease but also an ability to respond to the needs and questions of patients. This article provides an overview of the importance of communication skills in optimal surgical palliation and offers suggestions for a multidisciplinary team approach, using the palliative triangle as the ideal model of communication and interpersonal skills. This article also discusses guidelines for advanced surgical decision making and outlines methods to improve communication skills. PMID:22405432

  7. 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

  8. The role of embolization in palliative care.

    PubMed

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

    1995-10-01

    Transcatheter arterial embolization (TCAE) is a well recognized radiological technique that has been used for over 25 years. It is a method of diminishing blood flow through selected vessels by inserting haemostatic material under angiographic control. The procedure is performed under local anaesthetic through a femoral or, occasionally, an axillary approach. We present our experience of the use of TCAE in the management of pain and haemorrhage in three hospice inpatients in whom other options had been exhausted. The use of TCAE as a technique for the palliation of these symptoms in the hospice setting is discussed. PMID:8548096

  9. Supportive and Palliative Care of Advanced Nonmalignant Lung Disease

    Microsoft Academic Search

    Michael Kreuter; Felix J. F. Herth

    2011-01-01

    Supportive and palliative care is an interdisciplinary challenge with the aims of symptom relief and improvement of quality of life in end-stage patients. Main complaints of patients with advanced nonmalignant lung disease are depression and anxiety, dyspnea, pain, and coughing. The discomfort of many physicians, caregivers, and family members with discussions about end-of-life care is one obstacle for the timely

  10. User Perspective on Palliative Care Services: Experiences of Middle-aged Partners Bereaved through Cancer Known to Social Work Services in Northern Ireland

    Microsoft Academic Search

    Audrey Agnew; Roger Manktelow; Kevin Donaghy

    2008-01-01

    This qualitative research study explores experiences of partners bereaved through cancer, who were resident in an urban area of Northern Ireland and who had been service users of the social work services. Data were collected in 2004 from 10 individuals who participated in semi-structured interviews. Emergent themes were identified using thematic content analysis and findings analysed under four categories: cancer

  11. Teaching Palliative Care Across Cultures: The Singapore Experience

    PubMed Central

    Breaden, Katrina

    2011-01-01

    Palliative care is a growing area of practice throughout the world and its promotion relies on adequately trained health care professionals. However, there are only a limited number of postgraduate academic courses or clinical training opportunities available, especially in resource challenged areas of the Asia Pacific region. This article outlines a creative endeavour between Flinders University, Adelaide Australia, the Singapore National Cancer Centre and the Asia Pacific Hospice and Palliative Care Network to provide an educational opportunity for students from the region. The strengths of the programme include its strong theoretical and evidenced-based framework, its multidisciplinary inclusiveness and its innovative and interactive teaching style. The main teaching challenge for the teaching team is to deliver culturally appropriate curricula to students from diverse cultural and linguistic backgrounds. This postgraduate programme is an important initiative for the region and for the development of future leaders and pioneers in the discipline. PMID:21811364

  12. Pediatric palliative care - The role of the patient's family.

    PubMed

    Classen, Carl Friedrich

    2012-10-01

    Whenever a child suffers, what does she or he cry Mother! What does that mean Palliative care is not a type of medicine based on objective evidence or statistics. The only relevant standard is the very individual quality of life. Nobody knows better what this actually means but the patient himself. Thus, if the mother's presence has the biggest impact on a child's wellbeing or comfort, she herself is the most valuable treatment modality. In nearly every publication dealing with pediatric palliative care, it is stated that palliative care does not only imply care for the sick child but also for the parents and the whole family. Usually, it is pointed out that they are suffering a lot as well. But helping them does also mean: helping the child! Of course, it means higher efforts, obligations and costs for the healthcare system. Thus the justification of this effort may be put in question; in particular, it may be argued that disorders of family members should, if necessary, be treated as such. But this is only one side of the coin! In the following, we will, based on published literature, look at the role of mothers, fathers, and siblings for the wellbeing of an ill or even dying child. As a conclusion, we will learn that if it is our task to give a dying child the best available care, helping mothers, fathers and sibling is an inevitable part of it. PMID:25254162

  13. 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

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

    PubMed

    Kearney, Joan A; Byrne, Mary W

    2014-02-13

    Objective: The objective of this conceptual paper was to present important constructs in attachment theory as they apply to parent and caregiver behavior in pediatric palliative care. Clarification of these constructs is provided with specific reference to their clinical application as well as their reflection in current empirical literature. Social attachment theory is proposed as a developmentally contextual model for the study of parenting in pediatric palliative and end-of-life care. Method: A comprehensive search was conducted of pertinent literatures. These included classic as well as recent theory and research in attachment theory in addition to the empirical literatures on parent and family experience in pediatric palliative care, serious illness, and beyond to parental bereavement. Other relevant literature was examined with respect to the phenomena of concern. Results: The empirical literature in pediatric palliative care supports the use of central concepts in attachment theory as foundational for further inquiry. This is evidenced in the emphasis on the importance of parental protection of the child, as well as executive activities such as decision making and other prominent parental operations, parental psychological resolution of the child's diagnosis and illness as well as coping and meaning making, and the core significance of parental relationships with providers who provide secure-base and safe-haven functions. Significance of Results: The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to children and families receiving pediatric palliative care services. Focusing on key parental behaviors and processes within the context of a well-studied and contextually appropriate model will inform this task efficiently. The attachment paradigm meets these criteria and has promise in allowing us to move forward in developing well-defined, inclusive, and conceptually grounded protocols for child and family psychosocial research, practice, and education in this specialty. PMID:24524227

  15. Reporting Characteristics of Cancer Pain: A Systematic Review and Quantitative Analysis of Research Publications in Palliative Care Journals

    PubMed Central

    Kumar, Senthil P

    2011-01-01

    Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model. PMID:21633623

  16. Pain Measurement Tools and Methods in Clinical Research in Palliative Care: Recommendations of an Expert Working Group of the European Association of Palliative Care

    Microsoft Academic Search

    Augusto Caraceni; Nathan Cherny; Robin Fainsinger

    An Expert Working Group was convened under the auspices of the Steering Committee of the Research Network of the European Association of Palliative Care to review the status of the use of pain measurement tools (PMTs) in palliative care research conducted in a multilingual- multicenter setting. Based on a literature review and on the experts' opinion, the present work recommends

  17. 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

  18. Unbearable Pain: India's Obligation to Ensure Palliative Care

    NSDL National Science Digital Library

    The Human Rights Watch organization has written this report, which talks about the difficulties faced by patients in major cancer hospitals across India. Released in October 2009, this 102-page report takes an investigative look into the pain treatment situation in these hospitals. The report identifies three key obstacles to improving the availability of pain treatment and palliative care, including restrictive drug regulations and the failure to train doctors about pain treatment methods. Visitors will find that the report is divided into several major sections including "Palliative Care and Pain Treatment in India" and "The Plight of Patients". Additionally, interested parties can also view the appendices attached to the report. An online slide show and a video feature round out the site.

  19. [Nausea, vomiting and constipation in palliative care].

    PubMed

    Jordhøy, Marit S; Aass, Nina; Svensen, Rune; Ervik, Bente; Mohr, Wenche

    2006-02-23

    Nausea/vomiting and constipation are frequent symptoms among patients with advanced disease and short survival expectancy. The aim of this paper is to present the aetiology, diagnostic work-up, prophylaxis and treatment of these symptoms in palliative patients, based on a literature review and clinical experience. Nausea/vomiting is not a diagnosis, but symptoms with multiple causes. There is no universally applicable treatment approach. General guidelines for good treatment are: 1) impeccable assessment and work-up, 2) choice of treatment according to underlying causes and involved mechanisms, 3) pharmacological treatment applied jointly with non-pharmacological measures, 4) thorough follow-up and readjustment of treatment. During work-up, or if underlying causes can not be identified, metoclopramide, alternatively haloperidol, is the first drug of choice. Oral administration should be avoided until vomiting is controlled. Adequate hydration is important. The same general guidelines are applicable to handle constipation. However, prophylactic measures are also essential, focusing on risk factors (fluid intake, activity and toilet accommodations). Stool softening laxatives should be administered, (polyethylene glycol or lactulose), and if needed, combined with a bowel stimulant (bisacodyl or sodium picosulphate). Opioid use is among the most common causes of constipation and prescription of opioids should always be accompanied by prescription of laxatives. Exceptions are diarrhoea, ileostomy and dying patients. PMID:16505875

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

    PubMed Central

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

    2013-01-01

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

  1. Community nurses experiences: navigating the emotional journey of palliative care provision

    Microsoft Academic Search

    Jayln Rose; Nel Glass

    2007-01-01

    Background\\u000aA doctoral study entitled ‘Emotional work, emotional wellbeing and professional practice: the lived experiences of women community health nurses providing palliative care in the home environment in Australia’ was designed to investigate the experiences of community nurses (CNs) who provide palliative care in the primary health care setting. Whilst palliative care provision does not form the substantive role of

  2. [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

  3. Regional palliative care program in Extremadura: an effective public health care model in a sparsely populated region.

    PubMed

    Herrera, Emilio; Rocafort, Javier; De Lima, Liliana; Bruera, Eduardo; García-Peña, Francisco; Fernández-Vara, Guillermo

    2007-05-01

    The Regional Palliative Care Program in Extremadura (RPCPEx) was created and fully integrated into the Public Health Care System in 2002. The local health care authorities of Extremadura (a large sparsely populated region in the west of Spain with 1,083,897 inhabitants) decided to guarantee palliative care as a basic right, offering maximum coverage, availability, and equity, functioning at all levels of assistance and based on the complexity of the case. The program provides full coverage of the region through a network of eight Palliative Care Teams under the direction of a regional coordinator. The mobile teams work in acute hospitals and in the community. This paper describes the program, using qualitative and quantitative indicators of structure, process, and outcome. Qualitative indicators assess, among others, the performance of the regional network, including the outcomes of the quality, training, registry, treatment, and research groups. Quantitative indicators applied consisted of the number of professionals (1/26,436 inhabitants), number of patients (1,635/million inhabitants/year), number of activities/million inhabitants/year (6,183 hospital and 3,869 home visits; 1,863 consultations; 14,748 advising services; 11,539 coordination meetings; and 483 educational meetings), cost of care (2,242,000 Euros per year), and opioid consumption (494,654 daily defined doses/year). Four years after the planning process and three years after becoming operational, the RPCPEx offers an effective and efficient model integrated into the public health care system and is able to offer comprehensive coverage, availability, equity and networking among all the structures and levels of the program. Several structural and organizational tools were developed, which may be adopted by other programs within the scope of public health. The provision of palliative care should not be conditioned by the patient's geographical location, his or her condition or disease or on the ability to pay, but on need alone. This model has successfully implemented palliative care in a region that offered many challenges, including limited resources and a disperse population in a geographically extensive region. These variables are also common in many rural areas in developing countries and the regional palliative care program offers a flexible approach that can be adapted to the needs and resources in different settings and countries in the world. PMID:17482053

  4. 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

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

    PubMed

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

    2005-04-01

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

  6. The development of palliative care programs in the Veterans Administration: Zelda Foster's legacy.

    PubMed

    Daratsos, Louisa; Howe, Judith L

    2007-01-01

    The U.S. Department of Veterans Affairs (VA) has been a leader in program development and service delivery in the areas of geriatrics, hospice and palliative care for decades. Zelda Foster, MSW, serving as the Chief of Social Work Services at the Brooklyn VA Hospital for almost 20 years, was a force in the early days of the palliative care and hospice movement in the United States, publishing a seminal article in 1965, and contributing through educational initiatives, program development, information dissemination and mentorship of countless social workers. With an early recognition of the demographic imperative of aging veterans, the VA established a number of innovative programs which have been widely replicated outside of the VA. Zelda Foster was a central figure in the evolution of these programs and a strong and effective advocate for the inclusion of social workers. She deserves much credit for the fact that social workers are now centrally involved in an array of leadership activities in palliative and end-of-life care both within and outside of VA. PMID:18072661

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

    PubMed Central

    Towers, Anna; MacDonald, Neil; Wallace, Ellen

    2003-01-01

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

  8. 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…

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

    PubMed

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

    2010-09-01

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

  10. The experiences of providing children's palliative care education in undergraduate nursing programmes--a discussion of some practical issues.

    PubMed

    Nicholl, Honor; Price, Jayne

    2012-05-01

    Despite recent proliferation of palliative care services for children, and the fact that the needs of these children and their families are enshrined in current policy directives, the challenges of providing education for nurses within this area of practice is largely underexplored. This paper examines some of the key issues facing nurse educators who are involved in the delivery of palliative care content in undergraduate children's nursing programmes. Drawing on the extensive experiences of two nurse educators in children's palliative care education, research and practice, key issues which should be considered by those involved in curriculum development and delivery will be outlined. Such issues include ambiguity in terminology and resultant lack of conceptual clarity, the limited evidence base to underpin practice and education, the complexities of teaching sensitive topics to large groups and limited teaching expertise to deliver the content. Suggestions for addressing such issues will be outlined. PMID:22104955

  11. 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

  12. 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., E-mail: jackson.wu@cancerboard.ab.c [Department of Oncology, Division of Radiation Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta (Canada); Kerba, Marc [Department of Oncology, Division of Radiation Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta (Canada); Wong, Rebecca K.S. [Department of Radiation Oncology, Radiation Medicine Program, Princess Margaret Hospital, University of Toronto, Toronto, Ontario (Canada); Mckimmon, Erin [Radiation Treatment Program Management, Tom Baker Cancer Centre, Calgary, Alberta (Canada); Eigl, Bernhard [Department of Oncology, Division of Medical Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta (Canada); Hagen, Neil A. [Department of Oncology, Division of Palliative Medicine, Tom Baker Cancer Centre, and Department of Clinical Neurosciences and Medicine, University of Calgary, Calgary (Canada)

    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.

  13. [Pain management for adult patients relative to palliative care].

    PubMed

    Béziaud, Nicolas; Laval, Guillemette; Rostaing, Sylvie

    2009-06-20

    Pain management for a patient in palliative care requires a multi-functional approach that entails the physical, psychological, social and spiritual dimensions. It is based on a deep understanding of the pain physiopatology and its accurate assessment to optimize the treatment. This article provides guidelines to manage nociceptive and neuropathic pains, along with tips in case of refractory pains. It gives detailed instructions relative to the use of strong opiods taking advantage of the availability of new types of galenics. It proposes a decision tree relative to neuropatic pain management. PMID:19642435

  14. 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

  15. Challenges to and lessons learned from conducting palliative care research.

    PubMed

    O'Mara, Ann M; St Germain, Diane; Ferrell, Betty; Bornemann, Tami

    2009-03-01

    In response to a 2005 solicitation from the U.S. National Institutes of Health, 16 investigators received funding to test interventions that would reduce the barriers that prevent cancer patients from receiving adequate and appropriate symptom management therapies. Since the awards have been issued, the investigators have met two times and have identified a number of challenges to implementing their respective studies. A survey was conducted that focused on their experiences with hiring and retaining study personnel, gaining Institutional Review Board approval, incurring unexpected costs, challenges to accruing participants, and a listing of standard measures used in the study. The survey was completed online by the Principal Investigator for each project in late 2006 and the initial results were confirmed one year later by resending the initial survey and by a follow-up telephone call. All but one Principal Investigator completed the survey. Obtaining Institutional Review Board approval, hiring and recruiting research personnel, establishing subcontracts, and accruing research subjects were the primary challenges experienced by the investigators. This palliative care solicitation achieved more than its original intent of stimulating research in overcoming barriers to delivering cancer symptom management, palliative care and end-of-life care. From a survey on the challenges and issues that emerged from their projects, grantees were able to identify specific hurdles and their unique solutions that may help other investigators as they plan their program of research. PMID:18715749

  16. [Palliative care in patients without cancer: Impact of the end-of-life care team].

    PubMed

    Nishikawa, Mitsunori; Yokoe, Yuriko; Kubokawa, Naomi; Hukuda, Koji; Hattori, Hideyuki; Hong, Young-Jae; Miura, Hisayuki; Shibasaki, Masataka; Endo, Hidetoshi; Takeda, Jun; Odate, Mitsuru; Senda, Kazuyoshi; Nakashima, Kazumitsu

    2013-01-01

    Palliative care improves the quality of life of patients and their families facing problems associated with life-threatening illnesses by promoting the prevention and relief of suffering. Palliative care in Japan has been developed mainly for cancer patients. At the National Center for Geriatrics and Gerontology, an end-of-life care team (EOLCT) has been developed to promote palliative care for patients without cancer. In the first 6 months of its operation, 109 requests were received by the team, 40% of which were for patients without cancer or related disease, including dementia, frailty due to advanced age, chronic respiratory failure, chronic heart failure, and intractable neurologic diseases. The main purpose of the EOLCT is to alleviate suffering. The relevant activities of the team include the use of opioids, providing family care, and giving support in decision-making (advance care planning) regarding withholding; enforcement; and withdrawal of mechanical ventilators, gastric feeding tubes, and artificial alimentation. The EOLCT is also involved in ongoing discussions of ethical problems. The team is actively engaged in the activities of the Japanese Geriatric Society and contributes to the development of decision-making guidelines for end-of-life by the Ministry of Health, Labour and Welfare. The EOLCT can be helpful in promoting palliative care for patients with diseases other than cancer. The team offers support during times of difficulty and decision-making. PMID:24047661

  17. An innovative self-care module for palliative care medical learners.

    PubMed

    Kim, Hyon C; Rapp, Elaine; Gill, Ashlinder; Myers, Jeff

    2013-06-01

    Palliative care is a uniquely demanding field in that clinicians routinely address the complex needs of patients living with incurable illness. Due to their relative inexperience, medical learners completing a palliative care educational experience are particularly vulnerable to the stresses that are often encountered. To address this educational need, a structured Self-Care Module was developed for medical learners rotating through a palliative care clinical rotation. Components of this module include completion of a process recording exercise, a structured reflection, and participation in a facilitated group discussion. An examination of the acceptability, utility, and operational feasibility of the module demonstrated that 86% (n=35) of learners found the module helpful in reflecting on their clinical encounters, 86% (n=35) gained an appreciation for the importance of self-reflection and self-awareness as a component of self-care and 97% (n=35) gained a greater appreciation for sharing clinical experiences with other learners. This novel Self-Care Module was found to be a well accepted, useful, and operationally feasible educational experience for postgraduate and undergraduate learners completing a palliative care educational experience. PMID:23631613

  18. Early integration of palliative and supportive care in the cancer continuum: challenges and opportunities.

    PubMed

    Davis, Mellar P; Bruera, Eduardo; Morganstern, Daniel

    2013-01-01

    Palliative care has become synonymously associated with hospice care in the minds of patients and physicians. Supportive care is a more acceptable term and leads to earlier referral. Miscommunication and a "collusion of hope" centered on cancer treatment is detrimental to care at the end of life and results in complicated bereavement. Patients, despite being told prognosis, may not comprehend the news even if delivered in an empathetic manner. There are resource and policy barriers to palliative care. However, integration of palliative care early in the management of advanced cancer has demonstrated multiple benefits without reducing survival. PMID:23714482

  19. Providing culturally sensitive palliative care in the desert-the experience, the need, the challenges, and the solution.

    PubMed

    Singer, Yoram; Rotem, Bosmat; Alsana, Sa'id; Shvartzman, Pesach

    2009-08-01

    The Bedouin population of the Negev region in Israel consists of 180,000 Muslims, half of whom live in six townships. The other half is dispersed in small temporary settlements (huts, tents) with no running water or electricity. Accessibility is quite difficult, with no paved roads or any form of motorized public transportation. For patients with advanced illnesses near the end of life, adequate palliative treatment is not available in their rural homestead. A mobile palliative care unit (MPCU) has been established, with the aims of delivering palliative care to terminal patients living in remote regions not easily accessible to the community health care teams and to provide palliative care consultation services to the local primary care teams. The mobile unit consists of a core team of a nurse, a social worker, a physician, and a Bedouin driver-interpreter/translator. The MPCU cares for about 30 patients at any given time, including four to six Bedouins living in rural homesteads, four to six Bedouins living in townships, and the remainder Jewish patients living in the surrounding settlements. One hundred patients were cared for and about 1800 home visits were conducted during the past year, including 15% by the whole mobile unit team, 15% by the physician alone, 25% by the nurse alone, and 25% by the unit's nurse together with the local primary clinic nurse. The average distance covered per home visit was around 70km. Our experience in establishing a culturally sensitive MPCU can be a model to provide palliative care services in remote areas. PMID:19345058

  20. 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

  1. 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)

  2. Caregivers' active role in palliative home care – to encourage or to dissuade? A qualitative descriptive study

    Microsoft Academic Search

    Anna Weibull; Frede Olesen; Mette Asbjoern Neergaard

    2008-01-01

    BACKGROUND: Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The

  3. Pain Measurement Tools and Methods in Clinical Research in Palliative Care

    Microsoft Academic Search

    Augusto Caraceni; Nathan Cherny; Robin Fainsinger; Stein Kaasa; Philippe Poulain; Lukas Radbruch; Franco De Conno

    2002-01-01

    An Expert Working Group was convened under the auspices of the Steering Committee of the Research Network of the European Association of Palliative Care to review the status of the use of pain measurement tools (PMTs) in palliative care research conducted in a multilingual-multicenter setting. Based on a literature review and on the experts' opinion, the present work recommends that

  4. 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…

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

    PubMed Central

    2013-01-01

    Background Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients’ spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations. Methods The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items’ content validity, and (2) quantitative data collection (n?=?285 patients) using the POS and the Spirit 8 to assess construct validity. Results (1) Peace was interpreted according to the themes ‘perception of self and world’, ‘relationship to others’, ‘spiritual beliefs’ and ‘health and healthcare’. Life worthwhile was interpreted in relation to ‘perception of self and world’, ‘relationship to others’ and ‘identity’. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r?=?0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r?=?0.18) (both p?palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population. PMID:23758738

  6. 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

  7. The experiences of stress of palliative care providers in Malaysia: a thematic analysis.

    PubMed

    Beng, Tan Seng; Chin, Loh Ee; Guan, Ng Chong; Yee, Anne; Wu, Cathie; Pathmawathi, Subramaniam; Yi, Kweh Ting; Kuan, Wong Sook; Jane, Lim Ee; Meng, Christopher Boey Chiong

    2015-02-01

    A qualitative study was conducted with semistructured interviews to explore the experiences of stress in 20 palliative care providers of University Malaya Medical Centre in Malaysia. The results were thematically analyzed. Nine basic themes were generated: (1) organizational challenges, (2) care overload, (3) communication challenges, (4) differences in opinion, (5) misperceptions and misconceptions, (6) personal expectations, (7) emotional involvement, (8) death and dying thoughts, and (9) appraisal and coping. A total care model of occupational stress in palliative care was conceptualized from the analysis. This model may inform the development of interventions in the prevention and management of stress in palliative care. PMID:24023263

  8. Nutrition in palliative and end-of-life care.

    PubMed

    Gillespie, Loraine; Raftery, Anne-Marie

    2014-07-01

    Recent publications regarding nutrition highlight the importance of eating and drinking for patients and their family/carer. This article focuses on the importance of nutrition and early nutritional intervention, giving guidance for nurses when caring for patients with palliative and end-of-life care needs when the focus of nutrition centres around symptom control and quality of life. Clear, sensitive communication, with agreed nutritional goals set with the patient and their family/carer, and regular review and adaptation throughout any 'cancer journey' are paramount in order to minimise anxiety and distress. A multidisciplinary team approach is often required in order to support ethical decision-making and to assist in devising an individualised nutritional management plan. Although this article aims to focus upon the nutritional aspects associated with advancing cancer, many aspects will clearly be transferrable to patients with other life-limiting illnesses such as dementia and advanced cardiac and pulmonary disease. PMID:25039458

  9. 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

  10. Effectiveness of eHealth Interventions and Information Needs in Palliative Care: A Systematic Literature Review

    PubMed Central

    Ganzinger, Matthias; Perez-Lu, Jose; Knaup, Petra

    2014-01-01

    Background One of the key components in palliative care is communication. eHealth technologies can be an effective way to support communications among participants in the process of palliative care. However, it is unclear to what extent information technology has been established in this field. Objective Our goal was to systematically identify studies and analyze the effectiveness of eHealth interventions in palliative care and the information needs of people involved in the palliative care process. Methods We conducted a systematic literature search using PubMed, Embase, and LILACS according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We collected and analyzed quantitative and qualitative data regarding effectiveness of eHealth interventions and users’ information needs in palliative care. Results Our search returned a total of 240 articles, 17 of which met our inclusion criteria. We found no randomized controlled trial studying the effects of eHealth interventions in palliative care. Studies tended to be observational, noncontrolled studies, and a few quasi-experimental studies. Overall there was great heterogeneity in the types of interventions and outcome assessments; some studies reported some improvement on quality of care, documentation effort, cost, and communications. The most frequently reported information need concerned pain management. Conclusions There is limited evidence around the effectiveness of eHealth interventions for palliative care patients, caregivers, and health care professionals. Focused research on information needs and high-quality clinical trials to assess their effectiveness are needed. PMID:24610324

  11. Palliative care in public health: a formal and content-related analysis of European journals

    Microsoft Academic Search

    Nils Schneider; Anke Bramesfeld; Larissa Burruano

    2007-01-01

    Public health and health care science take on an important role in the further development of palliative care. This study\\u000a examines to what degree palliative care is represented in the pertinent academic journals of public health and health care\\u000a science and what the major subjects are. We analysed the European journals that were listed in the Journal Citation Reports in

  12. Impact of Critical Care Medicine Training Programs' Palliative Care Education and Bedside Tools on ICU Use at the End of Life

    PubMed Central

    Saft, Howard L.; Richman, Paul S.; Berman, Andrew R.; Mularski, Richard A.; Kvale, Paul A.; Ray, Daniel E.; Selecky, Paul; Ford, Dee W.; Asch, Steven M.

    2014-01-01

    Background Intensive care unit (ICU) use at the end of life is rising. Little research has focused on associations among critical care fellows' training, institutional support, and bedside tools with ICU use at the end of life. Objective We evaluated whether hospital and critical care medicine program interventions were associated with ICU use in the last 6 months of life for patients with chronic illness. Methods Our observational, retrospective study explored associations between results from a survey of critical care program directors and hospital-level Medicare data on ICU use in the last 6 months of life. Program directors evaluated quality of palliative care education in their critical care fellowships and reported on the number of bedside tools and the presence or absence of an inpatient palliative care consultation service. Results For the 89 hospitals and 71 affiliated training programs analyzed, there were statistically significant relationships between 2 of the explanatory variables—the quality of palliative care education and the number of bedside tools—in ICU use. Each level of increased educational quality (1–5 Likert scale) was associated with a 0.57-day decrease in ICU days, whereas, for each additional, evidence-based bedside tool, there was a 0.31-day decrease. The presence of an inpatient palliative care program was not a significant predictor of ICU use. Conclusions We found that the quality of palliative care training in critical care medicine programs and the use of bedside tools were independently associated with reduced ICU use at the end of life. PMID:24701309

  13. The challenge of providing palliative care to terminally ill prison inmates in the UK.

    PubMed

    Wood, Felicity Juliette

    2007-03-01

    Terminally ill prison inmates have a right to all aspects of health care including palliative care provision. However, there are numerous difficulties in providing palliative care to high-security prisoners in the UK. Local community hospices may be reluctant to admit terminally ill prisoners and therefore initiatives must be established to provide appropriate palliative care within the prison itself. Dying prisoners need companionship and to be shown respect and compassion to avoid feelings of loneliness and hopelessness. Inmate volunteers can provide an invaluable source of support and friendship for the terminally ill prisoner, helping to improve quality of life. PMID:17505406

  14. Self-determination: analysis of the concept and implications for research in palliative care.

    PubMed

    Bakitas, Marie A

    2005-06-01

    This paper analyzes the evolution and the definition, current use, and application of the concept of self-determination in palliative care research and practice. Undertaken as a foundation for the development of a palliative care research program, the analysis considers selected historical, bioethical, legal, clinical, and relevant medical and nursing health-care literature on adults with chronic and terminal illness. Based on a synthesis of the literature, a conceptual definition is proposed and ways of integrating the concept of self-determination into palliative care intervention research are identified. PMID:16092777

  15. 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

  16. 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

  17. Team-Based Education in a Palliative Approach for Rural Nurses and Unlicensed Care Providers.

    PubMed

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

    2015-06-01

    This article describes the preparation and delivery of an educational intervention designed to improve rural nurses and unlicensed care providers' confidence in a palliative approach to care. A palliative approach takes the principles of supportive palliative care and adapts them for application earlier in nonspecialized palliative contexts for individuals living with life-limiting chronic illness. Curriculum in a palliative approach was constructed for nurses and unlicensed care providers (care aides and home health workers) and was delivered through a workshop and monthly follow-up sessions offered through distance technology. Participants valued the joint interactive education and came away with greater appreciation for one another's contributions to care. Insights were gained into common challenges when attempting to apply a palliative approach in rural areas. Important lessons were learned about educating nurses and unlicensed care providers together, about the use of technology for this group, and about teaching the concept of a palliative approach. J Contin Educ Nurs. 2014;46(6):279-288. PMID:26057165

  18. Psychiatry Resident Education in Palliative Care: Opportunities, Desired Training, and Outcomes of a Targeted Educational Intervention

    PubMed Central

    Irwin, Scott A.; Montross, Lori P.; Bhat, Reshma G.; Nelesen, Richard A.; von Gunten, Charles F.

    2013-01-01

    Objectives To assess the educational offerings provided to psychiatry residents in palliative care as well as their concomitant interest in learning more about this subspecialty. To measure the pre- and post-levels of competence, concern, and knowledge exhibited by psychiatry residents when completing a formalized clinical rotation in hospice and palliative care, with additional comparisons to family and internal medicine residents completing the same clinical rotation. Methods Fifty-two Psychiatry Program Directors and 98 psychiatry residents completed an online survey assessing the current course offerings and level of interest in palliative care. Thirty psychiatry residents were additionally evaluated before and after completion of a clinical rotation in hospice and palliative care. Results Few programs offered any formalized training in palliative care, although nearly all psychiatry residents reported interest in this area. A clinical rotation in palliative care significantly increased psychiatry residents’ competence and knowledge while simultaneously decreasing their concerns about practice in this area; most were at levels comparable to family and internal medicine residents completing the same rotation. Psychiatry residents’ knowledge of pain assessment, pain management, and generalized non-pain management were also enhanced during the rotation. Conclusions Results indicate that training opportunities in palliative care are lacking for psychiatry residents in the United States although residents report strong interest in this area. This study finds psychiatry residents can benefit as much as other disciplines from receiving palliative care training. The need to offer such training within psychiatry residencies is highlighted and the welcoming of psychiatrists into palliative care is suggested. PMID:22054622

  19. 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

  20. Palliative chemotherapy or best supportive care? A prospective study explaining patients' treatment preference and choice

    Microsoft Academic Search

    C G Koedoot; R J de Haan; A M Stiggelbout; P F M Stalmeier; A de Graeff; P J M Bakker

    2003-01-01

    In palliative cancer treatment, the choice between palliative chemotherapy and best supportive care may be difficult. In the decision-making process, giving information as well as patients' values and preferences become important issues. Patients, however, may have a treatment preference before they even meet their medical oncologist. An insight into the patient's decision-making process can support clinicians having to inform their

  1. Primary Palliative Care for the General Internist: Integrating Goals of Care Discussions into the Outpatient Setting

    PubMed Central

    Ahia, Chad L.; Blais, Christopher M.

    2014-01-01

    Background Primary palliative care consists of the palliative care competencies required of all primary care clinicians. Included in these competencies is the ability to assist patients and their families in establishing appropriate goals of care. Goals of care help patients and their families understand the patient's illness and its trajectory and facilitate medical care decisions consistent with the patient's values and goals. General internists and family medicine physicians in primary care are central to getting patients to articulate their goals of care and to have these documented in the medical record. Case Report Here we present the case of a 71-year-old male patient with chronic obstructive pulmonary disorder, congestive heart failure, and newly diagnosed Alzheimer dementia to model pertinent end-of-life care communication and discuss practical tips on how to incorporate it into practice. Conclusion General internists and family medicine practitioners in primary care are central to eliciting patients' goals of care and achieving optimal end-of-life outcomes for their patients. PMID:25598737

  2. Implementing a quality improvement programme in palliative care in care homes: a qualitative study

    Microsoft Academic Search

    Sue Hall; Cassie Goddard; Frances Stewart; Irene J Higginson

    2011-01-01

    Background  An increasing number of older people reach the end of life in care homes. The aim of this study is to explore the perceived\\u000a benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement\\u000a programme in palliative care.\\u000a \\u000a \\u000a \\u000a \\u000a Methods  Nine care homes involved in the GSFCH took part. We conducted semi-structured interviews with

  3. Compilation of the neonatal palliative care clinical guideline in neonatal intensive care unit

    PubMed Central

    Zargham-Boroujeni, Ali; Zoafa, Aniyehsadat; Marofi, Maryam; Badiee, Zohreh

    2015-01-01

    Background: Clinical guidelines are important instruments for increasing the quality of clinical practice in the treatment team. Compilation of clinical guidelines is important due to special condition of the neonates and the nurses facing critical conditions in the neonatal intensive care unit (NICU). With 98% of neonatal deaths occurring in NICUs in the hospitals, it is important to pay attention to this issue. This study aimed at compilation of the neonatal palliative care clinical guidelines in NICU. Materials and Methods: This study was conducted with multistage comparative strategies with localization in Isfahan in 2013. In the first step, the components of the neonatal palliative care clinical guidelines were determined by searching in different databases. In the second stage, the level of expert group's consensus with each component of neonatal palliative care in the nominal group and focus group was investigated, and the clinical guideline was written based on that. In the third stage, the quality and applicability were determined with the positive viewpoints of medical experts, nurses, and members of the science board of five cities in Iran. Data were analyzed by descriptive statistics through SPSS. Results: In the first stage, the draft of neonatal palliative care was designed based on neonates’, their parents’, and the related staff's requirements. In the second stage, its rank and applicability were determined and after analyzing the responses, with agreement of the focus group, the clinical guideline was written. In the third stage, the means of indication scores obtained were 75%, 69%, 72%, 72%, and 68% by Appraisal of Guidelines for Research and Evaluation (AGREE) instrument. Conclusions: The compilation of the guideline can play an effective role in provision of neonatal care in nursing.

  4. 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

  5. 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 ...

  6. 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

  7. 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

  8. Creative solution for implementation of experiential, competency-based palliative care training for internal medicine residents.

    PubMed

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

    2011-09-01

    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

  9. Dyspnea Management in Palliative Home Care: A Case Series in Malaysia

    PubMed Central

    Thongkhamcharoen, Rojanasak; Breaden, Katrina; Agar, Meera; Hamzah, Ednin

    2012-01-01

    Managing dyspnea at home is a challenging task. Although a competent palliative home care team can assist a patient to live at home with better pain control, dyspnea is usually not as well managed. In the Asian context, there are few research studies in dyspnea management in palliative home care. This paper aims to illustrate the cultural context that has an impact on dyspnea management at home and the assessment and management of dyspnea in a community palliative care setting in Malaysia. This paper reports on a study of 5 dyspneic patients suffering from both cancer-related and non–cancer-related dyspnea. Its focus is on a unique Asian cultural belief system that affects communication about prognosis and the role of family in palliative home care. In addition, this paper also describes dyspnea assessment, the barriers to morphine use, benzodiazepine prescription, oxygen therapy, and nonpharmacologic intervention in this center. PMID:23093829

  10. Dyspnea management in palliative home care: a case series in malaysia.

    PubMed

    Thongkhamcharoen, Rojanasak; Breaden, Katrina; Agar, Meera; Hamzah, Ednin

    2012-05-01

    Managing dyspnea at home is a challenging task. Although a competent palliative home care team can assist a patient to live at home with better pain control, dyspnea is usually not as well managed. In the Asian context, there are few research studies in dyspnea management in palliative home care. This paper aims to illustrate the cultural context that has an impact on dyspnea management at home and the assessment and management of dyspnea in a community palliative care setting in Malaysia. This paper reports on a study of 5 dyspneic patients suffering from both cancer-related and non-cancer-related dyspnea. Its focus is on a unique Asian cultural belief system that affects communication about prognosis and the role of family in palliative home care. In addition, this paper also describes dyspnea assessment, the barriers to morphine use, benzodiazepine prescription, oxygen therapy, and nonpharmacologic intervention in this center. PMID:23093829

  11. Psychosocial screening and assessment in oncology and palliative care settings

    PubMed Central

    Grassi, Luigi; Caruso, Rosangela; Sabato, Silvana; Massarenti, Sara; Nanni, Maria G.; the UniFe Psychiatry Working Group Coauthors

    2014-01-01

    Psychiatric and psychosocial disorders among cancer patients have been reported as a major consequence of the disease and treatment. The problems in applying a pure psychiatric approach have determined the need for structuring more defined methods, including screening for distress and emotional symptoms and a more specific psychosocial assessment, to warrant proper care to cancer patients with psychosocial problems. This review examines some of the most significant issues related to these two steps, screening and assessment of psychosocial morbidity in cancer and palliative care. With regard to this, the many different variables, such as the factors affecting individual vulnerability (e.g., life events, chronic stress and allostatic load, well-being, and health attitudes) and the psychosocial correlates of medical disease (e.g., psychiatric disturbances, psychological symptoms, illness behavior, and quality of life) which are possibly implicated not only in “classical” psychiatric disorders but more broadly in psychosocial suffering. Multidimensional tools [e.g., and specific psychosocially oriented interview (e.g., the Diagnostic Criteria for Psychosomatic Research)] represent a way to screen for and assess emotional distress, anxiety and depression, maladaptive coping, dysfunctional attachment, as well as other significant psychosocial dimensions secondary to cancer, such as demoralization and health anxiety. Cross-cultural issues, such as language, ethnicity, race, and religion, are also discussed as possible factors influencing the patients and families perception of illness, coping mechanisms, psychological response to a cancer diagnosis. PMID:25709584

  12. Psychosocial screening and assessment in oncology and palliative care settings.

    PubMed

    Grassi, Luigi; Caruso, Rosangela; Sabato, Silvana; Massarenti, Sara; Nanni, Maria G; The UniFe Psychiatry Working Group Coauthors

    2014-01-01

    Psychiatric and psychosocial disorders among cancer patients have been reported as a major consequence of the disease and treatment. The problems in applying a pure psychiatric approach have determined the need for structuring more defined methods, including screening for distress and emotional symptoms and a more specific psychosocial assessment, to warrant proper care to cancer patients with psychosocial problems. This review examines some of the most significant issues related to these two steps, screening and assessment of psychosocial morbidity in cancer and palliative care. With regard to this, the many different variables, such as the factors affecting individual vulnerability (e.g., life events, chronic stress and allostatic load, well-being, and health attitudes) and the psychosocial correlates of medical disease (e.g., psychiatric disturbances, psychological symptoms, illness behavior, and quality of life) which are possibly implicated not only in "classical" psychiatric disorders but more broadly in psychosocial suffering. Multidimensional tools [e.g., and specific psychosocially oriented interview (e.g., the Diagnostic Criteria for Psychosomatic Research)] represent a way to screen for and assess emotional distress, anxiety and depression, maladaptive coping, dysfunctional attachment, as well as other significant psychosocial dimensions secondary to cancer, such as demoralization and health anxiety. Cross-cultural issues, such as language, ethnicity, race, and religion, are also discussed as possible factors influencing the patients and families perception of illness, coping mechanisms, psychological response to a cancer diagnosis. PMID:25709584

  13. 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

  14. Palliative Care and Dyspnea Management in Patients with Hematological Malignancies and Acute Respiratory Failure

    Microsoft Academic Search

    Amy P. Abernethy; Jane L. Wheeler; David C. Currow

    \\u000a In some patients with hematological malignancies and acute respiratory failure, the clinical emphasis shifts toward palliation.\\u000a In the palliative care phase, the goals of care move from cure of disease to improvement of the patient’s experience of living\\u000a and of dying, and optimization of the patient’s quality of life. Dyspnea, which frequently accompanies respiratory failure,\\u000a is particularly prevalent and distressing

  15. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: a communication guide.

    PubMed

    Jackson, Vicki A; Jacobsen, Juliet; Greer, Joseph A; Pirl, William F; Temel, Jennifer S; Back, Anthony L

    2013-08-01

    Early, integrated palliative care delivered in the ambulatory setting has been associated with improved quality of life, lower rates of depression, and even prolonged survival. We outline an expert practice that provides a step-wise approach to cultivating prognostic awareness in patients cared for by a palliative care clinician early in the course of the patient's disease. This approach can be used by both novice and more experienced palliative care clinicians. PMID:23786425

  16. Estimates of the Need for Palliative Care Consultation across United States Intensive Care Units Using a Trigger-based Model

    PubMed Central

    Li, Guohua; Blinderman, Craig D.; Wunsch, Hannah

    2014-01-01

    Rationale: Use of triggers for palliative care consultation has been advocated in intensive care units (ICUs) to ensure appropriate specialist involvement for patients at high risk of unmet palliative care needs. The volume of patients meeting these triggers, and thus the potential workload for providers, is unknown. Objectives: To estimate the prevalence of ICU admissions who met criteria for palliative care consultation using different sets of triggers. Methods: Retrospective cohort study of ICU admissions from Project IMPACT for 2001–2008. We assessed the prevalence of ICU admissions meeting one or more primary palliative care triggers, and prevalence meeting any of multiple sets of triggers. Measurements and Main Results: Overall, 53,124 (13.8%) ICU admissions met one or more primary triggers for palliative care consultation. Variation in prevalence was minimal across different types of units (mean 13.3% in medical ICUs to 15.8% in trauma/burn ICUs; P = 0.41) and individual units (mean 13.8%, median 13.0%, interquartile range, 10.2–16.5%). A comprehensive model combining multiple sets of triggers identified a total of 75,923 (19.7%) ICU admissions requiring palliative care consultation; of them, 85.4% were captured by five triggers: (1) ICU admission after hospital stay greater than or equal to 10 days, (2) multisystem organ failure greater than or equal to three systems, (3) stage IV malignancy, (4) status post cardiac arrest, and (5) intracerebral hemorrhage requiring mechanical ventilation. Conclusions: Approximately one in seven ICU admissions met triggers for palliative care consultation using a single set of triggers, with an upper estimate of one in five patients using multiple sets of triggers; these estimates were consistent across different types of ICUs and individual units. These results may inform staffing requirements for providers to ensure delivery of specialized palliative care to ICU patients nationally. PMID:24261961

  17. Valued aspects of primary palliative care: content analysis of bereaved carers' descriptions

    PubMed Central

    Grande, Gunn E; Farquhar, Morag C; Barclay, Stephen IG; Todd, Chris J

    2004-01-01

    Background: Informal carers provide the bulk of palliative home care. They largely rely on general practitioners (GPs) and district nurses to support them in this role, yet little is known about what carers themselves consider important in this support. Aim: To identify what informal carers valued in the palliative support provided by GPs and district nurses by using carers' own descriptions of such support. Design of study: Retrospective interviews. Setting: Primary care in Cambridgeshire. Method: Semi-structured interviews with bereaved carers of 48 patients with cancer and 12 patients with non-cancer diagnoses. Content analysis of carers' evaluative descriptions of GP and district nurse support. Results: The accessibility of the GP and district nurse emerged as the most important aspect of support. Enlistment of help from other agencies was also extensively mentioned, together with provision of equipment. Attitude or approach during interactions, and relationship with the professional were important, particularly regarding GP support, whereas support for the carer, information, and symptom control were mentioned less often. Data suggested that support was not as good for older patients (?75 years), but this finding requires further investigation. Conclusion: Results largely confirmed findings of previous, quantitative research and the importance of a patient-centred approach. What emerged most strongly, however, was the central importance of accessibility of support services for lay carers responsible for end-of-life home care. This mainly concerned GP and district nurse support, but accessibility of additional care and equipment were also important. In short, carers' main focus was the basic support that enabled them to sustain care in the home. PMID:15469677

  18. The ventilator-dependent infant requiring palliative care in the neonatal intensive care unit: A literature review

    Microsoft Academic Search

    Christine Foster; Leanne Monterosso

    2012-01-01

    Aim: To review the literature relevant to palliative care of the ventilated infant and their family.\\u000aBackground: Impeccable symptom assessment and management is necessary to ensure the optimal quality of life for the ventilated palliative infant and their family. There is a plethora of literature regarding symptom assessment and care when a decision has been made to withdraw ventilatory support.

  19. Palliative care of cancer patients: audit of current hospital procedures.

    PubMed

    Sessa, C; Pampallona, S; Carobbio, M; Neuenschwander, H; Cavalli, F

    1998-05-01

    The palliative care of cancer patients admitted for tumour-related symptoms to three different departments (medical oncology, radiotherapy, internal medicine) of a general hospital was prospectively audited. The physicians directly responsible for the patients provided prospective data by reporting both the diagnostic and therapeutic interventions performed and the degree of control achieved for each symptom. A patient form for evaluation of the control achieved in the case of each symptom by means of linear analogue scales was also provided. The appropriateness of all procedures was evaluated by two external auditors. Over 6 months, 125 such admissions were recorded: 24 patients entered the study and the management of 56 symptoms, the most common of which were pain and dyspnoea, was reviewed. A total of 72 diagnostic procedures were performed, deemed necessary for only 50% of symptoms, optional for 15%, and performed as part of a logical sequence for 38%. A total of 130 therapeutic interventions were undertaken, deemed necessary for 55% of symptoms, optional for 15% and carried out as part of a logical sequence for 44%. Re-evaluations of symptoms and physician and patient evaluations of the degree of control achieved could not be assessed because of lack of information. The audit could not be repeated owing to the low accrual of patients and incompleteness of the data collection. Reasons for failure of the study and proposals for feasible methods of auditing the management of symptoms in cancer patients are discussed. PMID:9629881

  20. Palliative care for HIV in the era of antiretroviral therapy availability: perspectives of nurses in Lesotho

    PubMed Central

    Kell, Megan E; Walley, John D

    2009-01-01

    Background Southern Africa is disproportionately affected by the HIV/AIDS epidemic. In Lesotho 23% of adults are HIV-positive, and only 26% of those in need are accessing antiretroviral treatment (ART). Consequently, about 18,000 people die from AIDS each year. In this situation, palliative care is needed towards the end of life, but is also recommended throughout the HIV disease trajectory. The World Health Organisation (WHO) has produced the Integrated Management of Adolescent and Adult Illness (IMAI) guidelines, which includes a palliative care guidebook (as well as acute and chronic ART guidebooks). IMAI aims to facilitate the implementation of integrated HIV/AIDS care in resource-poor areas. The opinions of health workers towards this integrated approach to care and the use of IMAI has not been considered in previous research studies. This paper therefore aims to address some of these issues. Methods Semi-structured interviews were conducted with six key informants and ten nurses in Lesotho. The interviews were transcribed verbatim and analysed using content thematic analysis. Results Many nurses described palliative care as synonymous with chronic care and felt that palliative care is necessary for HIV-positive patients despite the introduction of ART. It was thought that the approach taken should be holistic and integrated throughout the disease trajectory. Pain management was noted to be a particular area of need for palliative care, and it was suggested that this could be improved in Lesotho. The IMAI guidelines were thought to be useful, but knowledge of the palliative care booklet was limited. Conclusion Palliative care remains necessary for HIV despite the increasing availability of ART. However, it is currently significantly lacking in Lesotho and many other sub-Saharan African countries. Greater understanding of palliative care amongst health workers is required, as well as strong political will from the Ministry of Health. The IMAI guidelines are a useful tool for holistic HIV care, including palliative care, but they need to be used more effectively. As ART is becoming increasingly available worldwide, the complex chronic care issues for patients with HIV/AIDS should not be neglected. PMID:19682391

  1. Inviting parents to take part in paediatric palliative care research: A mixed-methods examination of selection bias

    PubMed Central

    Crocker, Joanna C; Beecham, Emma; Kelly, Paula; Dinsdale, Andrew P; Hemsley, June; Jones, Louise

    2015-01-01

    Background: Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown. Aim: To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents’ experiences of advance care planning (ACP). Design: We examined differences between eligible families invited and not invited to participate by clinicians using (1) field notes of discussions with clinicians during the invitation phase and (2) anonymised information from the service’s clinical database. Setting: Families were eligible for the ACP study if their child was receiving care from a UK-based tertiary palliative care service (Group A; N?=?519) or had died 6–10?months previously having received care from the service (Group B; N?=?73). Results: Rates of non-invitation to the ACP study were high. A total of 28 (5.4%) Group A families and 21 (28.8%) Group B families (p?palliative care studies. PMID:25519146

  2. Examining the Effects of an Outpatient Palliative Care Consultation on Symptom Burden, Depression, and Quality of Life in Patients With Symptomatic Heart Failure

    PubMed Central

    EVANGELISTA, LORRAINE S.; LOMBARDO, DAWN; MALIK, SHAISTA; BALLARD-HERNANDEZ, JENNIFER; MOTIE, MARJAN; LIAO, SOLOMON

    2014-01-01

    Background We conducted this prospective comparative study to examine the feasibility and effectiveness of a palliative care consultation along with standard heart failure care in an outpatient setting regarding symptom burden, depression, and quality of life (QOL). Methods and Results Thirty-six patients (53.6 ± 8.3 years old) were referred for an outpatient palliative care consultation after discharge. Changes in symptom burden, depression, and QOL at 3 months were compared with 36 patients with symptomatic heart failure matched on age, sex, race, and New York Heart Association functional class. Improvements were observed in symptom burden, depression, and QOL in both groups over time (all P <.005), but were more pronounced in patients receiving a palliative care consultation (all P <.035). Conclusions A palliative care consultation may reduce symptom burden and depression and enhance QOL in patients with symptomatic heart failure. Larger-scale randomized controlled trials sufficiently powered to assess clinical outcomes are warranted to determine the efficacy of palliative care services in outpatient settings regarding symptom distress, depression, and QOL in patients with symptomatic heart failure. PMID:23207076

  3. Developing a Pediatric Palliative Care Program: Addressing the Lack of Baseline Expenditure Information

    Microsoft Academic Search

    Caprice A. Knapp; Lindsay A. Thompson; W. Bruce Vogel; Vanessa L. Madden; Elizabeth A. Shenkman

    2009-01-01

    An estimated 500 000 children annually cope with life-limiting conditions expected to lead to premature death, but little is known about their health care expenditures at the end of life. This information is crucial for health planners to propose pediatric palliative care programs. This study aims to estimate predicted health care expenditures for Medicaid-eligible infants and children across several health

  4. 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

  5. Palliative care professional education in the new millennium: global perspectives--universal needs.

    PubMed

    Krasuska, Ma?gorzata E; Stanis?awek, Andrzej; Mazurkiewicz, Maria

    2002-01-01

    In the 20th century, the palliative care is based mostly upon the Anglo-Saxon and Christian contemporary model of care. Is such a model sufficient and could be transformed to the places outside of Judeo-Christian based, west civilization? Is such a model transcultural and could be used for problems solving for those who are professionally involved in the end-of-life care? The universal needs of the dying human being and the family are seen by the authors in the global perspective, and that perspective is tailored as a base for the transcultural model of the education for the professionals within the palliative care. PMID:12898957

  6. Impact of a Palliative Care Program on End-of-life Care in a Neonatal Intensive Care Unit

    PubMed Central

    Younge, Noelle; Smith, P. Brian; Goldberg, Ronald N.; Brandon, Debra H.; Simmons, Catherine; Cotten, C. Michael; Bidegain, Margarita

    2015-01-01

    Objective Evaluate changes in end-of-life care following initiation of a Palliative Care Program in a neonatal intensive care unit. Study Design Retrospective study comparing infant deaths before and after implementation of a Palliative Care Program comprised of medication guidelines, an individualized order set, a nursing care plan, and staff education. Result 82 infants died before (Era 1) and 68 infants died after implementation of the program (Era 2). Morphine use was similar [88% vs. 81%; p=0.17], while benzodiazepines use increased in Era 2 [26% vs. 43%; p=0.03]. Withdrawal of life support (73% vs. 63%; p=0.17) and do-not-resuscitate orders (46% vs. 53%; p=0.42) were similar. Do-not-resuscitate orders and family meetings were more frequent among Era 2 infants with activated palliative care orders (n=21) compared to infants without activated orders (n=47). Conclusion End-of-life family meetings and benzodiazepine use increased following implementation of our program, likely reflecting adherence to guidelines and improved communication. PMID:25341195

  7. A survey of the views of palliative care healthcare professionals towards referring cancer patients to participate in randomized controlled trials in palliative care

    Microsoft Academic Search

    Clare White; Kristen Gilshenan; Janet Hardy

    2008-01-01

    Goals of work  Clinical trials in palliative care (PC), especially randomised controlled trials (RCTs), are notoriously difficult to complete.\\u000a One perceived challenge is gatekeeping, the reluctance of some healthcare professionals (HCPs) to refer patients for research\\u000a studies. This study aimed to identify the extent of gatekeeping from palliative RCTs.\\u000a \\u000a \\u000a \\u000a Materials and methods  An anonymous questionnaire was sent to 597 HCPs with an

  8. Is There Evidence That Palliative Care Teams Alter End-of-Life Experiences of Patients and Their Caregivers?

    Microsoft Academic Search

    Irene J Higginson; Ilora G Finlay; Danielle M Goodwin; Kerry Hood; Adrian G. K Edwards; Alison Cook; Hannah-Rose Douglas; Charles E Normand

    2003-01-01

    Palliative care provision varies widely, and the effectiveness of palliative and hospice care teams (PCHCT) is unproven. To determine the effect of PCHCT, 10 electronic databases (to 2000), 4 relevant journals, associated reference lists, and the grey literature were searched. All PCHCT evaluations were included. Anecdotal and case reports were excluded. Forty-four studies evaluated PCHCT provision. Teams were home care

  9. Complementary medicine in palliative care and cancer symptom management.

    PubMed

    Mansky, Patrick J; Wallerstedt, Dawn B

    2006-01-01

    Complementary and alternative medicine (CAM) use among cancer patients varies according to geographical area, gender, and disease diagnosis. The prevalence of CAM use among cancer patients in the United States has been estimated to be between 7% and 54%. Most cancer patients use CAM with the hope of boosting the immune system, relieving pain, and controlling side effects related to disease or treatment. Only a minority of patients include CAM in the treatment plan with curative intent. This review article focuses on practices belonging to the CAM domains of mind-body medicine, CAM botanicals, manipulative practices, and energy medicine, because they are widely used as complementary approaches to palliative cancer care and cancer symptom management. In the area of cancer symptom management, auricular acupuncture, therapeutic touch, and hypnosis may help to manage cancer pain. Music therapy, massage, and hypnosis may have an effect on anxiety, and both acupuncture and massage may have a therapeutic role in cancer fatigue. Acupuncture and selected botanicals may reduce chemotherapy-induced nausea and emesis, and hypnosis and guided imagery may be beneficial in anticipatory nausea and vomiting. Transcendental meditation and the mindfulness-based stress reduction can play a role in the management of depressed mood and anxiety. Black cohosh and phytoestrogen-rich foods may reduce vasomotor symptoms in postmenopausal women. Most CAM approaches to the treatment of cancer are safe when used by a CAM practitioner experienced in the treatment of cancer patients. The potential for many commonly used botanical to interact with prescription drugs continues to be a concern. Botanicals should be used with caution by cancer patients and only under the guidance of an oncologist knowledgeable in their use. PMID:17034678

  10. Barriers in Referring Neonatal Patients to Perinatal Palliative Care: A French Multicenter Survey

    PubMed Central

    Tosello, Barthélémy; Dany, Lionel; Bétrémieux, Pierre; Le Coz, Pierre; Auquier, Pascal; Gire, Catherine; Einaudi, Marie-Ange

    2015-01-01

    Background When an incurable fetal condition is detected, some women (or couples) would rather choose to continue with the pregnancy than opt for termination of pregnancy for medical reasons, which, in France, can be performed until full term. Such situations are frequently occurring and sometimes leading to the implementation of neonatal palliative care. The objectives of this study were to evaluate the practices of perinatal care french professionals in this context; to identify the potential obstacles that might interfere with the provision of an appropiate neonatal palliative care; and, from an opposite perspective, to determine the criteria that led, in some cases, to offer this type of care for prenatally diagnosed lethal abnormality. Methods We used an email survey sent to 434 maternal-fetal medicine specialists (MFMs) and fetal care pediatric specialists (FCPs) at 48 multidisciplinary centers for prenatal diagnosis (MCPD). Results Forty-two multidisciplinary centers for prenatal diagnosis (87.5%) took part. In total, 102 MFMs and 112 FCPs completed the survey, yielding response rate of 49.3%. One quarter of professionals (26.2%) estimated that over 20% of fetal pathologies presenting in MCPD could correspond to a diagnosis categorized as lethal (FCPs versus MFMs: 24% vs 17.2%, p = 0.04). The mean proportion of fetal abnormalities eligible for palliative care at birth was estimated at 19.30% (± 2.4) (FCPs versus MFMs: 23.4% vs 15.2%, p = 0.029). The degree of diagnostic certainty appears to be the most influencing factor (98.1%, n = 207) in the information provided to the pregnant woman with regard to potential neonatal palliative care. The vast majority of professionals, 92.5%, supported considering the practice of palliative care as a regular option to propose antenatally. Conclusions Our study reveals the clear need for training perinatal professionals in perinatal palliative care and for the standardization of practices in this field. PMID:25978417

  11. Assessment of palliative care training in gynecologic oncology: A gynecologic oncology fellow research network study

    PubMed Central

    Eskander, Ramez N.; Osann, Kathryn; Dickson, Elizabeth; Holman, Laura L.; Rauh-Hain, J. Alejandro; Spoozak, Lori; Wu, Eijean; Krill, Lauren; Fader, Amanda Nickles; Tewari, Krishnansu S.

    2014-01-01

    Objective Palliative care is recognized as an important component of oncologic care. We sought to assess the quality/quantity of palliative care education in gynecologic oncology fellowship. Methods A self-administered on-line questionnaire was distributed to current gynecologic oncology fellow and candidate members during the 2013 academic year. Descriptive statistics, bivariate and multivariate analyses were performed. Results Of 201 fellow and candidate members, 74.1% (n = 149) responded. Respondents were primarily women (75%) and white (76%). Only 11% of respondents participated in a palliative care rotation. Respondents rated the overall quality of teaching received on management of ovarian cancer significantly higher than management of patients at end of life (EOL), independent of level of training (8.25 vs. 6.23; p < 0.0005). Forty-six percent reported never being observed discussing transition of care from curative to palliative with a patient, and 56% never received feedback about technique regarding discussions on EOL care. When asked to recall their most recent patient who had died, 83% reported enrollment in hospice within 4 weeks of death. Fellows reporting higher quality EOL education were significantly more likely to feel prepared to care for patients at EOL (p < 0.0005). Mean ranking of preparedness increased with the number of times a fellow reported discussing changing goals from curative to palliative and the number of times he/she received feedback from an attending (p < 0.0005). Conclusions Gynecologic oncology fellow/candidate members reported insufficient palliative care education. Those respondents reporting higher quality EOL training felt more prepared to care for dying patients and to address complications commonly encountered in this setting. PMID:24887355

  12. An Overview of the ACE Project—Advocating for Clinical Excellence: Transdisciplinary Palliative Care Education

    PubMed Central

    Otis-Green, Shirley; Ferrell, Betty; Spolum, Maren; Uman, Gwen; Mullan, Patricia; Baird, Reverend Pamela; Grant, Marcia

    2009-01-01

    Background Excellence in palliative care demands attention to the multidimensional aspects of patient and family suffering, yet too few psycho-oncology professionals report adequate preparation in this vital area. Methods A total of 148 competitively selected psychologists, social workers, and spiritual care professionals participated in intensive educational courses to enhance their palliative care delivery, leadership, and advocacy skills. Extensive process and outcome evaluations measured the effectiveness of this educational program. Results To date, 2 national courses have been completed. The courses received strong overall evaluations, with participants rating increased confidence in defined palliative care skills. Conclusions The initial results of this innovative National Cancer Institute-funded transdisciplinary training for psycho-oncology professionals affirm the need and feasibility of the program. See the Advocating for Clinical Excellence Project Web site (www.cityofhope.org/ACEproject) for additional course information. PMID:19431028

  13. Validation of a New Instrument for Self-Assessment of Nurses' Core Competencies in Palliative Care

    PubMed Central

    Slåtten, Kari; Hatlevik, Ove; Fagerström, Lisbeth

    2014-01-01

    Competence can be seen as a prerequisite for high quality nursing in clinical settings. Few research studies have focused on nurses' core competencies in clinical palliative care and few measurement tools have been developed to explore these core competencies. The purpose of this study was to test and validate the nurses' core competence in palliative care (NCPC) instrument. A total of 122 clinical nurse specialists who had completed a postbachelor program in palliative care at two university colleges in Norway answered the questionnaire. The initial analysis, with structural equation modelling, was run in Mplus 7. A modified confirmatory factor analysis revealed the following five domains: knowledge in symptom management, systematic use of the Edmonton symptom assessment system, teamwork skills, interpersonal skills, and life closure skills. The actual instrument needs to be tested in a practice setting with a larger sample to confirm its usefulness. The instrument has the potential to be used to refine clinical competence in palliative care and be used for the training and evaluation of palliative care nurses. PMID:25132989

  14. Clinical Effectiveness of Online Training in Palliative Care of Primary Care Physicians

    PubMed Central

    Perez-Hoyos, Santiago; Agra-Varela, Yolanda

    2013-01-01

    Abstract Background Primary care physicians (PCPs) have a major responsibility in the management of palliative patients. Online palliative care (PC) education has not been shown to have a clinical impact on patients that is equal or different to traditional training. Objective This study tested the clinical effectiveness of online PC education of physicians through impact on symptom control, quality of life (QOL), caregiver satisfaction, and knowledge-attitude of physicians at 18 months of the intervention. Methods We conducted a randomized clinical trial. Subjects were 169 physicians randomly assigned to receive the online model or traditional training. Consecutive patients with advanced cancer requiring PC were included. Physicians and patients completed the Palliative Care Outcome Scale (POS), and patients the Brief Pain Inventory (BPI) and the Rotterdam Symptom Checklist (RSCL) twice, 7 to 10 days apart. Caregivers completed the SERVQUAL. Physicians' level of knowledge-attitude was measured at 18 months. Results Sixty-seven physicians enrolled 117 patients. The intervention group had reduced scores for pain, symptoms, and family anxiety. The global RSCL scale showed a difference between groups. There was no significant difference in the questionnaires used. Caregiver satisfaction was comparable between groups. Physicians in the intervention group significantly increased their knowledge without any differences in attitude. Online training was completed by 86.6% in the intervention group, whereas 13.4% in the control group accessed traditional training. Conclusions Participation in an online PC education program by PCPs improved patient scores for some symptoms and family anxiety on the POS and also showed improved global QOL. Significant differences were found in physicians' knowledge at short and long term. PMID:23987657

  15. The challenges of providing palliative care for older people with dementia.

    PubMed

    Küpper, Anita-Luise; Hughes, Julian C

    2011-08-01

    Palliative care seems the right approach to dementia, except that it suggests a dichotomy between cure and care. As in cancer care, supportive care provides a broader framework, viewing dementia from the time of diagnosis until death and bereavement. The challenge is to find the right approach to the individual. This challenge arises in the person's own home, in long-term care homes, and in hospitals. The challenging features of palliative care for older people with dementia are found in connection with the use of antibiotics, antipsychotics, and other medications, as well as in decisions about whether the person is in pain or in distress, or whether artificial feeding should be contemplated or not, as well as about the use of advance care plans. In short, the challenges are essentially ethical as well as clinical. The right approach will be the one that recognizes this facet of clinical care. PMID:21503596

  16. Promoting Excellence in Pain Management and Palliative Care for Social Workers

    Microsoft Academic Search

    Shirley Otis-Green; Sharon Lucas; Maren Spolum; Betty Ferrell; Marcia Grant

    2008-01-01

    Social workers, like other health care providers, may lack the necessary skills for effective pain and symptom management and to competently address the complex yet critical bio-psychosocial-spiritual needs facing seriously ill patients and their families. The purpose of this article is to describe the development of a national educational program designed to promote excellence in pain management and palliative care

  17. A Survey of Chaplains' Roles in Pediatric Palliative Care: Integral Members of the Team

    Microsoft Academic Search

    Kathryn A. Lyndes; George Fitchett; Nancy Berlinger; Wendy Cadge; Jennifer Misasi; Erin Flanagan

    2012-01-01

    To date, the field of health care chaplaincy has had little information about how pediatric palliative care (PPC) programs meet the spiritual needs of patients and families. We conducted a qualitative study consisting of surveys of 28 well-established PPC programs in the United States followed by interviews with medical directors and professional chaplains in 8 randomly selected programs among those

  18. Assistance to children in palliative care in the Brazilian scientific literature

    PubMed Central

    Garcia-Schinzari, Nathália Rodrigues; Santos, Franklin Santana

    2014-01-01

    Objective: To describe what has been published in Brazilian scientific literature regarding pediatric palliative care. Data sources: Bibliographic review with a descriptive approach. In LILACS and SciELO databases, the descriptors "palliative care", "child", "pediatrics", "terminal illness" and "death" were sought, from January 2002 to December 2011. The eight selected articles were analyzed according to year of publication, type of study, data collected, target population, pathology, professionals involved, types of care and main findings. Data synthesis: Regarding the year of publication, there was an increase in the number of publications related to pediatric palliative care. Regarding the type of study, four articles were literature reviews and four were qualitative researches. Data was collected mainly by semi-structured interviews. The participants of the majority of the studies were children's relatives and health professionals. The main pathology addressed was cancer and the nurses were the most frequently cited professionals. The types of care provided were related to physical aspects, general care and psychological, social and spiritual aspects (less emphasis). The main findings were: little emphasis on the children's needs, the importance of including the family in the care provided and the lack of preparation of the health team. Conclusions: Despite the difficulties and the challenges in establishing pediatric palliative care, many articles brought important considerations for the development of this practice in the country. PMID:24676197

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

    PubMed Central

    Przys?o, ?ukasz; K?dzierska, Bogna; Stolarska, Ma?gorzata; M?ynarski, Wojciech

    2013-01-01

    Context. The current literature suggests that perinatal palliative care (PPC) programs should be comprehensive, initiated early, and integrative. So far there have been very few publications on the subject of home-based PC of newborns and neonates. Most publications focus on hospital-based care, mainly in the neonatal intensive care units. Objective. To describe the neonates and infants who received home-based palliative care in Lodz Region between 2005 and 2011. Methods. A retrospective review of medical records. Results. 53 neonates and infants were admitted to a home hospice in Lodz Region between 2005 and 2011. In general, they are a growing group of patients referred to palliative care. Congenital diseases (41%) were the primary diagnoses; out of 53 patients 16 died, 20 were discharged home, and 17 stayed under hospice care until 2011. The most common cause of death (56%) was cardiac insufficiency. Neurological symptoms (72%) and dysphagia (58%) were the most common clinical problems. The majority of children (45%) had a feeding tube inserted and were oxygen dependent (45%); 39 families received psychological care and 31 social supports. Conclusions. For terminally ill neonates and infants, perinatal palliative care is an option which improves the quality of their lives and provides the family with an opportunity to say goodbye. PMID:24083234

  20. Palliative care and the hospitalist: an opportunity for cross-fertilization

    Microsoft Academic Search

    J. Cameron Muir; Robert M Arnold

    2001-01-01

    Most US citizens die in acute care hospitals, often in physical pain, without attention to emotional and spiritual suffering. This represents an ethical failure of our current health-care system. The field of palliative medicine aims to address the physical, emotional, and spiritual needs of patients with advanced disease. At the same time, a new specialty of hospitalists is emerging, providing

  1. Palliative care and the hospitalist: An opportunity for cross-fertilization

    Microsoft Academic Search

    J. Cameron Muir; Robert M. Arnold

    2002-01-01

    Most US citizens die in acute care hospitals, often in physical pain, without attention to emotional and spiritual suffering. This represents an ethical failure of our current health-care system. The field of palliative medicine aims to address the physical, emotional, and spiritual needs of patients with advanced disease. At the same time, a new specialty of hospitalists is emerging, providing

  2. Outcome measures in palliative care for advanced cancer patients: a review

    Microsoft Academic Search

    Julie Hearn; Irene J. Higginson

    Summary Information generated using outcome measures to measure the effectiveness of palliative care interventions is potentially invaluable. Depending on the measurement tool employed the results can be used to monitor clinical care, carry out comparative research, provide audit data or inform purchas- ing decisions. However, the data collected can only ever be as good as the method used to obtain

  3. Developing Interdisciplinary Skills and Professional Confidence in Palliative Care Social Work Students

    ERIC Educational Resources Information Center

    Supiano, Katherine P.; Berry, Patricia H.

    2013-01-01

    Research suggests that better educational preparation is necessary to assure that health care social workers have the competencies essential for high quality interdisciplinary palliative care practice. This study is a qualitative evaluation of those elements contributing to competence and confidence in interdisciplinary practice skills of second…

  4. The Nursing Dimension of Providing Palliative Care to Children and Adolescents with Cancer

    PubMed Central

    Docherty, Sharron L.; Thaxton, Cheryl; Allison, Courtney; Barfield, Raymond C.; Tamburro, Robert F.

    2012-01-01

    Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer. PMID:23641169

  5. Few U.S. Public Health Schools Offer Courses on Palliative and End-of-Life Care Policy

    PubMed Central

    Deneszczuk, Caroline; Leystra, Tara; McKinnon, Rebecca; Seng, Victoria

    2013-01-01

    Abstract Background: Palliative care has been identified by the World Health Organization (WHO) as a critical policy element for the relief of suffering, yet palliative care policy receives minimal attention in mainstream U.S. public health journals, conferences, or textbooks. In the ’90s, documentation of the lack of attention to end-of-life and palliative care in medical and nursing curricula led to concerted efforts to improve medical and nursing education in palliative care. No such educational effort has yet been directed toward public health professionals. Objective: This study's objective was to quantify current course offerings covering palliative and end-of-life care from a public health and health policy perspective at accredited schools of public health. Design: Using a list of keywords about palliative and end-of-life care, the research team searched publicly accessible websites of all CEPH accredited and affiliated U.S. schools of public health to identify courses that included relevant content about palliative care. Results: For academic years 2011/12 and 2012/13, 3 (6%) of the 49 accredited U.S. schools of public health offered a full course covering public health issues in palliative care. Six schools (12%) included some palliative care content in related courses such as gerontology policy. Conclusions: Schools of public health are not preparing future policy experts with a basic knowledge of the components and systems of palliative care and hospice. Development and dissemination of appropriate curricular material to address the public health and policy aspects of palliative care is needed to address this gap. PMID:24256202

  6. The current situation in education and training of health-care professionals across Africa to optimise the delivery of palliative care for cancer patients

    PubMed Central

    Rawlinson, FM; Gwyther, L; Kiyange, F; Luyirika, E; Meiring, M; Downing, J

    2014-01-01

    The need for palliative care education remains vital to contribute to the quality of life of patients, both adults and children, with cancer in Africa. The number of patients with cancer continues to rise, and with them the burden of palliative care needs. Palliative care has been present in Africa for nearly four decades, and a number of services are developing in response to the HIV/AIDS epidemic. However, the needs of cancer patients remain a challenge. Education and training initiatives have developed throughout this time, using a combination of educational methods, including, more recently, e-learning initiatives. The role of international and national organisations in supporting education has been pivotal in developing models of education and training that are robust, sustainable, and affordable. Developing a material for education and professional development needs to continue in close collaboration with that already in production in order to optimise available resources. Seeking ways to evaluate programmes in terms of their impact on patient care remains an important part of programme delivery. This article reviews the current situation. PMID:25624873

  7. Assessment of knowledge, attitude and exposure to oncology and palliative care in undergraduate medical students.

    PubMed

    Biswal, B M; Zakaria, A; Baba, A A; Ja'afar, R

    2004-03-01

    We conducted a questionnaire survey among 261 year-4 and year-5 medical students containing 27 questions related to cancer, radiotherapy, general oncology and palliative care to assess their knowledge, understanding, and exposure to oncology and palliative care in our medical school. Out of 261 students, 139 students returned their questionnaire for analysis. Twenty nine percent (29%) of the students had rarely visited the Radiotherapy and Oncology unit. There were profound deficiencies in the basic knowledge of cancer (46%), principles of radiotherapy treatment (59%), palliative care (64%), and cancer prevention (48%). They reported no specific teaching about early detection of common malignancies and cancer prevention. The main input of instruction about cancer came from surgery (46%) and pathology (28%) teachings. This study revealed that there is deficiency in cancer education in the undergraduate teaching program in our institution. PMID:15535340

  8. Objective and subjective nutritional assessment of patients with cancer in palliative care.

    PubMed

    Kwang, Ang Yee; Kandiah, Mirnalini

    2010-03-01

    This study aimed to evaluate the nutritional status of patients with cancer in palliative care and to examine the interrelationship between objective and subjective nutritional assessment measures. Patients' nutritional status in a palliative care unit of a Malaysian government hospital and a hospice facility were assessed using anthropometric measurements, weight loss at 1/6 months, and the scored patient-generated subjective global assessment (PG-SGA). Moderate-to-severe malnutrition was observed in a range from 31% to 69% using both measurements. Common nutritional impact symptoms were pain, xerostomia, and anorexia. Patient-generated subjective global assessment scores were significantly correlated with anthropometric measurements (P < .050). The PG-SGA is equally informative as objective indicators and is recommended as a quickly applied tool for nutritional status assessment of patients with cancer in palliative care. PMID:19959839

  9. Pain and Symptom Management in Palliative Care and at End of Life

    PubMed Central

    Ezenwa, Miriam O.

    2012-01-01

    The purpose of this review is to provide a literature update of the research published since 2004 on pain and symptom management in palliative care and at end of life. Findings suggest that pain and symptom are inadequately assessed and managed even at the end of life. Although not pervasive, there is evidence of racial/ethnic disparities in symptom management in palliative care and at end of life. There is a need for a broader conceptualization and measurement of pain and symptom management as multidimensional experiences. There is insufficient evidence about mechanisms underlying pain at end of life. Although there are advances in the knowledge of pain as a multidimensional experience and the many symptoms that occur sometimes with pain, still gaps remain. One approach of addressing the gaps will involve assessment and management of pain and symptoms as multidimensional experiences in people receiving palliative care and at end of life. PMID:22985972

  10. [Palliative care for HIV/AIDS patients: bioethical principles adopted by nurses].

    PubMed

    de Vasconcelos, Monica Ferreira; da Costa, Solange Fátima Geraldo; Lopes, Maria Emília Limeira; Abrão, Fátima Maria da Silva; Batista, Patricia Serpa de Souza; Oliveira, Regina Celia

    2013-09-01

    This study sought to investigate the principles of bioethics considered by nurses involved in research while caring for patients with HIV/Aids under palliative care. An exploratory study, with a qualitative approach, was conducted with twelve nurses in a public hospital in the municipality of João Pessoa in the State of Paraíba. A form was used for data collection and the empirical material was analyzed qualitatively using the content analysis technique. The following categories emerged from the qualitative analysis: Respect for the autonomy of HIV/Aids patients under palliative care; and Enhancement of the principles of charity, non-malevolence and justice in providing palliative care to HIV/Aids patients. The results revealed that the participants acknowledge the importance of bioethical principles while caring for patients with HIV/Aids under palliative care. The work provides a reflection on and elicits the pursuance of further studies which can contribute to improve the quality of life of these patients with care based on ethical principles. PMID:23989562

  11. Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study

    PubMed Central

    2013-01-01

    Background According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. Methods In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. Results In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Conclusions Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe. PMID:23866928

  12. A bedside food cart as an alternate food service for acute and palliative oncological patients.

    PubMed

    Pietersma, Patti; Follett-Bick, Sandra; Wilkinson, Brenda; Guebert, Nancy; Fisher, Kim; Pereira, Jose

    2003-09-01

    Patients with advanced cancer experience various problems with eating, and their meals should be tailored to meet their specific needs. Two methods of food service were compared in a shared acute oncology/palliative care unit; an electrical food cart allowing patients to select their food types and portions at the bedside, and a traditional food tray delivery service that relied on meals being prepared in a centralized kitchen and then delivered by tray. Over a 10-day period, lunch meals were delivered by food cart and supper meals via food trays. Twenty-seven out of 32 patients participated in the trial. Patients significantly preferred the food cart to the trays with respect to the timing and appeal of the meal, appropriateness of food types and food portions and the variety of the food choices. A food cart as used in this trial provides a more flexible and appropriate method of food delivery to in-patients in the oncology and palliative unit. Further studies should examine whether this translates to improved caloric intake and quality of life parameters. PMID:12883966

  13. 42 CFR 418.56 - Condition of participation: Interdisciplinary group, care planning, and coordination of services.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ...care must include all services necessary for the palliation and management of the terminal illness and related conditions, including the following: (1) Interventions to manage pain and symptoms. (2) A detailed statement of the scope...

  14. 42 CFR 418.56 - Condition of participation: Interdisciplinary group, care planning, and coordination of services.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ...care must include all services necessary for the palliation and management of the terminal illness and related conditions, including the following: (1) Interventions to manage pain and symptoms. (2) A detailed statement of the scope...

  15. Developing a web-based information resource for palliative care: an action-research inspired approach

    PubMed Central

    Street, Annette F; Swift, Kathleen; Annells, Merilyn; Woodruff, Roger; Gliddon, Terry; Oakley, Anne; Ottman, Goetz

    2007-01-01

    Background General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website [1]. Method The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166). Results Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers). Conclusion Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach. PMID:17854509

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

    PubMed Central

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

    2015-01-01

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

  17. ‘No matter what the cost’: A qualitative study of the financial costs faced by family and wh?nau caregivers within a palliative care context

    PubMed Central

    Allen, Ruth; Moeke-Maxwell, Tess; Gardiner, Clare; Robinson, Jackie

    2015-01-01

    Background: There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. Aim: To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. Design: In-depth qualitative interviews were conducted with 30 family/wh?nau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Setting: Auckland, New Zealand. Findings: Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Conclusion: Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and wh?nau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings. PMID:25680378

  18. Proposed quality measures for palliative care in the critically ill: A consensus from the Robert Wood Johnson Foundation Critical Care Workgroup

    Microsoft Academic Search

    Richard A. Mularski; J. Randall Curtis; J. Andrew Billings; Robert Burt; Ira Byock; Cathy Fuhrman; Anne C. Mosenthal; Justine Medina; Daniel E. Ray; Gordon D. Rubenfeld; Lawrence J. Schneiderman; Patsy D. Treece; Robert D. Truog; Mitchell M. Levy

    2006-01-01

    For critically ill patients and their loved ones, high-quality health care includes the provision of excellent palliative care. To achieve this goal, the healthcare system needs to identify, mea- sure, and report specific targets for quality palliative care for critically ill or injured patients. Our objective was to use a con- sensus process to develop a preliminary set of quality

  19. Home telehealth and paediatric palliative care: clinician perceptions of what is stopping us?

    PubMed Central

    2014-01-01

    Background Advances in technology have made the use of telehealth in the home setting a feasible option for palliative care clinicians to provide clinical care and support. However, despite being widely available and accessible, telehealth has still not been widely adopted either in Australia or internationally. The study aim was to investigate the barriers, enablers and perceived usefulness for an established home telehealth program in paediatric palliative care from the perspective of clinicians. Methods Semi-structured interviews (n?=?10) were undertaken with palliative care clinicians in a tertiary paediatric hospital to identify attitudes to, satisfaction with, and perceived benefits and limitations of, home telehealth in palliative care. Iterative analysis was used to thematically analyse data and identify themes and core concepts from interviews. Results Four themes are reported: managing relationships; expectations of clinicians; co-ordination, and the telehealth compromise. Core concepts that emerged from the data were the perceived ability to control clinical encounters in a virtual environment and the need to trust technology. These concepts help explain the telehealth compromise and low utilisation of the home telehealth program. Conclusions Effective communication between caregivers and clinicians is recognised as a core value of palliative care. Home telehealth has the potential to provide a solution to inequity of access to care, facilitate peer support and maintain continuity of care with families. However, significant limitations and challenges may impede its use. The virtual space creates additional challenges for communication, which clinicians and families may not intuitively understand. For home telehealth to be integrated into routine care, greater understanding of the nature of communication in the virtual space is required. PMID:24963287

  20. The experiences of suffering of palliative care informal caregivers in Malaysia: a thematic analysis.

    PubMed

    Beng, Tan Seng; Guan, Ng Chong; Seang, Lim Kheng; Pathmawathi, Subramaniam; Ming, Moy Foong; Jane, Lim Ee; Chin, Loh Ee; Loong, Lam Chee

    2013-08-01

    A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering in 15 palliative care informal caregivers in University Malaya Medical Centre. The data were thematically analyzed. Seven basic themes were generated (1) empathic suffering, (2) anticipatory grief, (3) obsessive-compulsive suffering, (4) helpless-powerless suffering, (5) obligatory suffering, (6) impedimental suffering, and (7) repercussion suffering. A model of compassion suffering was conceptualized from the analysis. This model may serve as a guide in the assessment and management of suffering in palliative care informal caregivers. PMID:23341445

  1. The Experiences of Well-Being of Palliative Care Patients in Malaysia: A Thematic Analysis.

    PubMed

    Beng, Tan Seng; Chin, Loh Ee; Guan, Ng Chong; Ann, Yee Hway; Wu, Cathie; Kuan, Wong Sook; Jane, Lim Ee; Khee, Saw Shier; Meng, Christopher Boey Chiong

    2015-08-01

    A qualitative study was conducted with semistructured interviews to explore the experiences of well-being in 15 adult palliative care inpatients of University Malaya Medical Center, Kuala Lumpur, Malaysia. The results were thematically analyzed. Six basic themes were generated (1) positive attitude, (2) positive cognitions, (3) positive emotions, (4) positive engagement, (5) positive relationships, and (6) positive circumstances. The Seeds Model was conceptualized from the analysis. This model may inform the development of interventions in the enhancement of well-being of palliative care patients. PMID:24574364

  2. [The perception by nurses of the significance of palliative care in patients with terminal cancer].

    PubMed

    Fernandes, Maria Andréa; Evangelista, Carla Braz; Platel, Indiara Carvalho dos Santos; Agra, Glenda; Lopes, Marineide de Souza; Rodrigues, Francileide de Araújo

    2013-09-01

    This study sought to assess the perception of nurses with respect to cancer patients under palliative care. It is an exploratory study with a qualitative approach conducted with nurses from a hospital attending cancer patients under palliative care located in the city of João Pessoa, State of Paraíba. The study included nine nurses who worked in the hospital. The empirical material was collected using the technique of semi-structured interviews and analyzed using the content analysis technique. The interpretative analysis of the interviews led to the definition of three categories: Improving the quality of life through the alleviation of pain and suffering; Palliative Care: a multi-professional study of terminal patients and their families in the grieving process; Communication: a source of dignity in the terminal care process. The conclusion reached is that the study revealed that the nurses involved acknowledge the importance of the multidisciplinary team. It enables the nurses to reflect on the use of communication as an essential element of care for patient and family under palliative care. It is hoped that the data obtained may foster further research on the topic. PMID:23989565

  3. Estimating the Effect of Palliative Care Interventions and Advance Care Planning on ICU Utilization: A Systematic Review

    PubMed Central

    Khandelwal, Nita; Kross, Erin K.; Engelberg, Ruth A.; Coe, Norma B.; Long, Ann C.; Curtis, J. Randall

    2015-01-01

    Objective We conducted a systematic review to answer three questions: 1) Do advance care planning and palliative care interventions lead to a reduction in ICU admissions for adult patients with life-limiting illnesses? 2) Do these interventions reduce ICU length of stay? and 3) Is it possible to provide estimates of the magnitude of these effects? Data Sources We searched MEDLINE, EMBASE, Cochrane Controlled Clinical Trials, and Cumulative Index to Nursing and Allied Health Literature databases from 1995 through March 2014. Study Selection We included studies that reported controlled trials (randomized and nonrandomized) assessing the impact of advance care planning and both primary and specialty palliative care interventions on ICU admissions and ICU length of stay for critically ill adult patients. Data Extraction Nine randomized controlled trials and 13 nonrandomized controlled trials were selected from 216 references. Data Synthesis Nineteen of these studies were used to provide estimates of the magnitude of effect of palliative care interventions and advance care planning on ICU admission and length of stay. Three studies reporting on ICU admissions suggest that advance care planning interventions reduce the relative risk of ICU admission for patients at high risk of death by 37% (sd, 23%). For trials evaluating palliative care interventions in the ICU setting, we found a 26% (sd, 23%) relative risk reduction in length of stay with these interventions. Conclusions Despite wide variation in study type and quality, patients who received advance care planning or palliative care interventions consistently showed a pattern toward decreased ICU admissions and reduced ICU length of stay. Although sds are wide and study quality varied, the magnitude of the effect is possible to estimate and provides a basis for modeling impact on healthcare costs. PMID:25574794

  4. We would like to take this opportunity to invite you to the 4th Annual Great Lakes Regional Palliative Care Conference (formally known as Challenging Topics in Palliative Care) on April 17, 2015. This is a CME conference sponsored by the Palliative Care C

    E-print Network

    We would like to take this opportunity to invite you to the 4th Annual Great Lakes Regional of Wisconsin. 4th Annual Great Lakes Regional Palliative Care Conference Save the date: April 17, 2015 and dessert. We look forward to seeing you at this year's 4th Annual Great Lakes Regional Palliative Care

  5. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer

    Microsoft Academic Search

    Jennifer S. Temel; Joseph A. Greer; Alona Muzikansky; Emily R. Gallagher; Sonal Admane; Vicki A. Jackson; Constance M. Dahlin; Craig D. Blinderman; Juliet Jacobsen; William F. Pirl; J. Andrew Billings; Thomas J. Lynch

    2010-01-01

    Background Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end-of-life care among ambulatory patients with newly diagnosed disease. Methods We randomly assigned patients with newly diagnosed metastatic non-small-cell lung cancer to receive

  6. Acting as standardized patients enhances family medicine residents' self-reported skills in palliative care.

    PubMed

    Sittikariyakul, Pat; Jaturapatporn, Darin; Kirshen, A J

    2015-08-01

    Recent publications have confirmed the use of standardized patients (SPs) in improving clinical skills and enhancing competency. Little research has studied the benefits residents may themselves gain in palliative care playing the role of SPs. Nineteen Family Medicine residents were recruited as standardized patients (FMR-SPs) for a mandatory palliative care workshop in communication for incoming, first-year trainees. Four months later, FMR-SPs reflected upon their own experiences. Two independent researchers performed thematic analysis of these interviews. Most of the residents were satisfied with their roles. Twelve reported improved understanding of self, their patients, the doctor-patient relationship, and the underlying philosophy of palliative care. They also described improved verbal and non-verbal communication skills. Eleven of 14 residents reflected upon behavioral changes in problem coping styles. All residents indicated an intention to apply the learning in their future work. Encouraging Thai Family Medicine residents, in years one through three, to portray SPs in palliative care appears to be a valuable learning experience for the resident. Future studies to validate whether this learning has been applied in subsequent practice are planned. PMID:25256636

  7. [SENS is making sense - on the way to an innovative approach to structure Palliative Care problems].

    PubMed

    Eychmüller, Steffen

    2012-02-01

    Assessment in Palliative Care is a broad field trying to integrate various dimensions from physical, psychological, social and spiritual problems and suffering. Medical diagnosis alone may not successfully reflect this multidimensional aspects, as it may be true for nursing diagnosis. In addition, any assessment procedures in palliative care needs a) to be performed in an interprofessional way, i.e. integrating various perspectives, b) to avoid additional burden for the patient, and c) to allow repetitive longitudinal follow up in order to assess the outcomes of interventions. Derived from WHO definition of Palliative Care from 2002 we developed at our centre the problem- rather than diagnosis based SENS-Model and started its clinical implementation. This new tool to structure narratives from patients may facilitate not only to prioritize the various problems, but also to define tasks and responsibilities within the team including the evaluation of the intended benefit. Apart, SENS may help to avoid medicalisation and focus on pathological rather then salutogenetic interpretation. By this, SENS may develop towards a first problem - based ";classification and assessment system" in palliative care, possibly valuable for other chronic diseases and its multidimensional problems, too. PMID:22334197

  8. Symptoms and Attitudes of 100 Consecutive Patients Admitted to an Acute Hospice\\/Palliative Care Unit

    Microsoft Academic Search

    Kai Ng; Charles F. von Gunten

    1998-01-01

    One hundred patients admitted to an acute hospice\\/palliative care unit in a U.S. teaching hospital were evaluated using a standardized data acquisition tool that assessed the presence of physical symptoms and attitudes concerning admission to such a specialty unit. Patients entering the unit between June 1995 and October 1995 completed the tool within 24 hours of admission. Symptoms reported were

  9. Getting the Message Across: Does the Use of Drama Aid Education in Palliative Care?

    ERIC Educational Resources Information Center

    O'Connor, Margaret; Abbott, Jo-Anne; Recoche, Katrina

    2012-01-01

    Drama is a promising means of delivering educational messages in palliative care. Research studies have found drama to be an effective means of delivering educational messages in other domains of learning, such as teaching health education to children and adults and engaging the general public in health policy development. This paper discusses the…

  10. Initial demographic, symptom, and medication profiles in patients admitted to continuing palliative care units.

    PubMed

    Jenkins, C A; Taube, A W; Turner, K; Hanson, J; Bruera, E

    1998-09-01

    We retrospectively reviewed 110 consecutive admissions to continuing palliative care units, which were designed as part of a regionalized, comprehensive palliative care program in Edmonton, Canada. Ninety-six patient charts met the criteria for evaluation. Demographic characteristics, and, when available, symptom profiles, cognitive status, and risk for a history of substance abuse were described. The medications on admission were tabulated, and in those 93 patients who had consults done by a palliative care consultant, these are compared to recommended medications. This study showed an older cohort of patient (mean +/- SD = 75 +/- 11 years) than had previously been described in a tertiary unit in the same community. Median length of stay was 21 days (range, 0-> 200 days). Cognitive impairment was higher than would be anticipated on the basis of age alone, with 32/47 [64% (confidence interval (CI) 55%-81%)] of patients who had had cognitive testing done on the day of consult being found to be cognitively impaired. Symptoms, as measured by the Edmonton Symptom Assessment Scale, were similar to those found for patients admitted to the tertiary palliative care unit. In the 93 patients who had palliative care consults done on admission, there were a total of 179 recommendations for medication or hydration changes. Overall compliance with these recommendations was 84% (CI, 79%-89%). The highest compliance was observed for recommendations to start hydration clysis [27/27, 100% (CI, 100%)], and the lowest rate was observed for altering or decreasing hypnotic medications [11/22, 50% (CI, 29%-71%)]. We conclude that the patients were of higher acuity than anticipated. PMID:9769618

  11. On the notion of home and the goals of palliative care

    Microsoft Academic Search

    W. J. M. Dekkers

    2009-01-01

    The notion of home is well known from our everyday experience, and plays a crucial role in all kinds of narratives about human\\u000a life, but is hardly ever systematically dealt with in the philosophy of medicine and health care. This paper is based upon\\u000a the intuitively positive connotation of the term “home.” By metaphorically describing the goal of palliative care

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

    Microsoft Academic Search

    Daryl Bainbridge; Kevin Brazil; Paul Krueger; Jenny Ploeg; Alan Taniguchi

    2010-01-01

    BACKGROUND: There is increasing global interest in regional palliative care networks (PCN) to integrate care, creating systems that are more cost-effective and responsive in multi-agency settings. Networks are particularly relevant where different professional skill sets are required to serve the broad spectrum of end-of-life needs. We propose a comprehensive framework for evaluating PCNs, focusing on the nature and extent of

  13. Integration of palliative care into the neuro-oncology practice: patterns in the United States

    PubMed Central

    Walbert, Tobias

    2014-01-01

    Background Between 80%–85 percent of all adult brain tumors are high-grade gliomas (HGGs). Despite aggressive treatment with surgical resection, radiotherapy and chemotherapy, the survival of patients with HGG is limited. Brain tumor patients develop unique symptoms and needs throughout their disease trajectory, and the majority lose the ability to communicate during the end-of-life phase. Palliative care (PC) is a proactive and systematic approach to manage issues that are important to patients and families affected by serious illness. The goal is to improve quality of life and symptom control and thereby reduce suffering. Most PC interventions take place during the end-of-life phase; however, newer data suggest that early PC interventions might improve symptom control and quality of life. Methods A literature review focusing on PC, hospice care, and end-of-life care was performed with the aim to describe the integration of PC into neuro-oncology practice. Results Recently there has been increased interest in the effects of PC and brain tumor patients. The origins, methodology, and conceptual models of delivering PC and how it might be applied to the field of neuro-oncology were reviewed. Patterns of referral and utilization in neuro-oncology are described based on the findings of a recent survey. Conclusions Despite a very high symptom burden, many HGG patients do not receive the same level of PC and have fewer interactions with PC services than other cancer populations. Early PC interventions and structured advance-care planning might improve symptom control and quality of life for brain tumor patients.

  14. In their own words: Patients and families define high-quality palliative care in the intensive care unit*

    PubMed Central

    Nelson, Judith E.; Puntillo, Kathleen A.; Pronovost, Peter J.; Walker, Amy S.; McAdam, Jennifer L.; Ilaoa, Debra; Penrod, Joan

    2011-01-01

    Objective Although the majority of hospital deaths occur in the intensive care unit and virtually all critically ill patients and their families have palliative needs, we know little about how patients and families, the most important “stakeholders,” define high-quality intensive care unit palliative care. We conducted this study to obtain their views on important domains of this care. Design Qualitative study using focus groups facilitated by a single physician. Setting A 20-bed general intensive care unit in a 382-bed community hospital in Oklahoma; 24-bed medical–surgical intensive care unit in a 377-bed tertiary, university hospital in urban California; and eight-bed medical intensive care unit in a 311-bed Veterans’ Affairs hospital in a northeastern city. Patients Randomly-selected patients with intensive care unit length of stay ?5 days in 2007 to 2008 who survived the intensive care unit, families of survivors, and families of patients who died in the intensive care unit. Interventions None. Measurements and Main Results Focus group facilitator used open-ended questions and scripted probes from a written guide. Three investigators independently coded meeting transcripts, achieving consensus on themes. From 48 subjects (15 patients, 33 family members) in nine focus groups across three sites, a shared definition of high-quality intensive care unit palliative care emerged: timely, clear, and compassionate communication by clinicians; clinical decision-making focused on patients’ preferences, goals, and values; patient care maintaining comfort, dignity, and personhood; and family care with open access and proximity to patients, interdisciplinary support in the intensive care unit, and bereavement care for families of patients who died. Participants also endorsed specific processes to operationalize the care they considered important. Conclusions Efforts to improve intensive care unit palliative care quality should focus on domains and processes that are most valued by critically ill patients and their families, among whom we found broad agreement in a diverse sample. Measures of quality and effective interventions exist to improve care in domains that are important to intensive care unit patients and families. PMID:20198726

  15. Building the Palliative Care Evidence Base: Lessons from a Randomized Controlled Trial of Oxygen vs. Room Air for Refractory Dyspnea

    PubMed Central

    LeBlanc, Thomas W.; Abernethy, Amy P.

    2014-01-01

    Palliative Care is increasingly seen as a standard component of high-quality comprehensive cancer care. However, there remain several challenges to its widespread integration into clinical oncology practice, including workforce problems, reimbursement concerns, and a fledgling evidence base. Here we discuss issues around evidence base development in palliative cancer care, using the example of a recently-published randomized controlled trial of oxygen vs. room air. The Oxygen Trial randomized patients with refractory dyspnea and adequate PaO2 to oxygen or room air, administered via nasal cannula. Both groups experienced improvements in self-rated dyspnea scores, but there were no statistical differences between intervention arms. These results suggest that supplementary oxygen is often unnecessary in the palliative setting, and that room air is similarly efficacious. This example highlights the importance and need for ongoing development of the evidence base in palliative medicine. The Palliative Care Research Cooperative Group (PCRC) is a novel National Institute of Nursing Research-funded research infrastructure that seeks to expand the palliative care evidence base. Its first multi-site trial was recently completed, assessing the pragmatic question of whether statin medications can be safely discontinued in end-of-life settings. The PCRC will be a vehicle through which a high-quality evidence base will continue to expand and develop. Such ongoing research efforts are needed to inform and improve palliative care practice. PMID:24994919

  16. Core competencies in palliative care for surgeons: interpersonal and communication skills.

    PubMed

    Bradley, Ciarán T; Brasel, Karen J

    Surgeons are an important part of the multidisciplinary approach to the care of terminally ill and dying patients. Some surgical residencies have recognized the need to incorporate palliative care-related topics into graduate surgical education. One core competency of utmost importance to palliative care is the effective use of interpersonal and communication skills. Four areas of surgical practice are identified where these communication skills are important: during preoperative counseling, when presenting a devastating diagnosis or poor prognosis, when discussing error, and when discussing death. Case examples and recommendations for the appropriate words and actions to use in these scenarios are offered. It is important for both surgeons in practice and those in training to achieve proficiency with these communication skills. PMID:18182636

  17. Clinical Practice Guidelines for Delirium Management: Potential Application in Palliative Care

    PubMed Central

    Bush, Shirley H.; Bruera, Eduardo; Lawlor, Peter G.; Kanji, Salmaan; Davis, Daniel H.J.; Agar, Meera; Wright, David; Hartwick, Michael; Currow, David C.; Gagnon, Bruno; Simon, Jessica; Pereira, José L.

    2014-01-01

    Context Delirium occurs in patients across a wide array of health care settings. The extent to which formal management guidelines exist or are adaptable to palliative care is unclear. Objectives This review aims to 1) source published delirium management guidelines with potential relevance to palliative care settings, 2) discuss the process of guideline development, 3) appraise their clinical utility, and 4) outline the processes of their implementation and evaluation and make recommendations for future guideline development. Methods We searched PubMed (1990–2013), Scopus, U.S. National Guideline Clearinghouse, Google, and relevant reference lists to identify published guidelines for the management of delirium. This was supplemented with multidisciplinary input from delirium researchers and other relevant stakeholders at an international delirium study planning meeting. Results There is a paucity of high-level evidence for pharmacological and non-pharmacological interventions in the management of delirium in palliative care. However, multiple delirium guidelines for clinical practice have been developed, with recommendations derived from “expert opinion” for areas where research evidence is lacking. In addition to their potential benefits, limitations of clinical guidelines warrant consideration. Guidelines should be appraised and then adapted for use in a particular setting before implementation. Further research is needed on the evaluation of guidelines, as disseminated and implemented in a clinical setting, focusing on measurable outcomes in addition to their impact on quality of care. Conclusion Delirium clinical guidelines are available but the level of evidence is limited. More robust evidence is required for future guideline development. PMID:24766743

  18. Educating surgeons for the new golden hours: honing the skills of palliative care.

    PubMed

    Huffman, Joan L

    2005-04-01

    All surgeons should maintain a lifetime commitment to education and learning. Those who already are in practice need to make the effort to obtain or refresh their education in basic competencies in palliative care and to provide a measured balance between philosophy and practical skills. Many resources and teaching tools are available to assist in this continuing process: surgical peers (and peers from other medical specialties),journals, textbooks, CME conferences, surgical governance and educational organizations, and palliative care websites. A tremendous summary article on palliative care education for surgeons was published recently in JACS[24]. Surgeons must be competent in the following palliative care skills:communication, holistic patient evaluation, control of pain and symptoms,understanding legal/ethical issues, withdrawing care, and the continuum of acute to chronic to terminal care. If they cannot attend to all of these areas individually, they need to be aware of the local, regional, and national resources that are available to assist the patient (or their surrogate decision maker) and themselves in the end-of-life arena. Consultations and referrals should be accomplished in such a manner that the patient does not feel abandoned by his/her surgeon at such a critical point in his/her life. Practicing surgeons also must be involved actively in the education of resident and medical students in didactic and clinical situations. Most importantly, they must model the appropriate behaviors for their charges personally, whether it be in the consultation room breaking bad news compassionately or at the bedside easing the path to the next world. In these golden hours, the educated surgeon who wields new and mighty resources can be the greatest champion of the patient who is at the end of life. PMID:15833479

  19. Assessment of advanced practice palliative care nursing competencies in nurse practitioner students: implications for the integration of ELNEC curricular modules.

    PubMed

    Shea, Joyce; Grossman, Sheila; Wallace, Meredith; Lange, Jean

    2010-04-01

    Advanced practice nurses (APRNs) have key roles in the care of patients who are nearing death and those living with a disabling chronic disease. This article describes a mixed-method formative assessment of 36 graduate nursing students' knowledge about and attitudes toward palliative care preliminary to curricular integration of the End-of-Life Nursing Education Consortium (ELNEC) graduate core modules. Students' knowledge about palliative care was assessed using the 106-item ELNEC examination. In addition, qualitative data were gathered regarding students' definitions of palliative care, the role of the APRN in palliative care, and their definitions of a "good" and "bad" death. Results revealed students' limited knowledge about palliative care. Qualitative findings indicated that most students exclusively linked palliative care with end-of-life care and believed that the treatment they provide should have the goal of prolonging life over maintaining quality of life. Implications for curriculum design, advanced practice role development, and collaboration with community health partners are discussed. PMID:19954137

  20. Acting with dedication and expertise: Relatives' experience of nurses' provision of care in a palliative unit.

    PubMed

    Grøthe, A; Biong, Stian; Grov, E K

    2013-11-01

    Objectives: Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward. Methods: A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background. Results: Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is "acting with dedication and expertise." Significance of results: The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise. PMID:24182691

  1. How useful are systematic reviews for informing palliative care practice? Survey of 25 Cochrane systematic reviews

    PubMed Central

    Wee, Bee; Hadley, Gina; Derry, Sheena

    2008-01-01

    Background In contemporary medical research, randomised controlled trials are seen as the gold standard for establishing treatment effects where it is ethical and practical to conduct them. In palliative care such trials are often impractical, unethical, or extremely difficult, with multiple methodological problems. We review the utility of Cochrane reviews in informing palliative care practice. Methods Published reviews in palliative care registered with the Cochrane Pain, Palliative and Supportive Care Group as of December 2007 were obtained from the Cochrane Database of Systematic Reviews, issue 1, 2008. We reviewed the quality and quantity of primary studies available for each review, assessed the quality of the review process, and judged the strength of the evidence presented. There was no prior intention to perform any statistical analyses. Results 25 published systematic reviews were identified. Numbers of included trials ranged from none to 54. Within each review, included trials were heterogeneous with respect to patients, interventions, and outcomes, and the number of patients contributing to any single analysis was generally much lower than the total included in the review. A variety of tools were used to assess trial quality; seven reviews did not use this information to exclude low quality studies, weight analyses, or perform sensitivity analysis for effect of low quality. Authors indicated that there were frequently major problems with the primary studies, individually or in aggregate. Our judgment was that the reviewing process was generally good in these reviews, and that conclusions were limited by the number, size, quality and validity of the primary studies. We judged the evidence about 23 of the 25 interventions to be weak. Two reviews had stronger evidence, but with limitations due to methodological heterogeneity or definition of outcomes. No review provided strong evidence of no effect. Conclusion Cochrane reviews in palliative care are well performed, but fail to provide good evidence for clinical practice because the primary studies are few in number, small, clinically heterogeneous, and of poor quality and external validity. They are useful in highlighting the weakness of the evidence base and problems in performing trials in palliative care. PMID:18715496

  2. The Zarit Burden Interview in Portugal: Validity and recommendations in dementia and palliative care.

    PubMed

    Gonçalves-Pereira, Manuel; Zarit, Steven H

    2014-01-01

    The impact of dementia on informal or family caregivers became a public health issue. One well-established tool for the assessment of emotional, physical and social impact on caregivers is the Zarit Burden Interview. Worldwide, it is widely used in epidemiological studies, drug or psychosocial clinical trials, and health services research. The original focus on burden among dementia caregivers has spread to other clinical contexts, mostly in old age and palliative care. Given these diverse applications, issues around the validity and reliability of national translations are crucial to assure that all evidence gathered is indeed of high quality. Moreover, caution is needed on the use of cut-offs for categorizing levels of caregiver strain or of subscales derived from recurrent exploratory factor analyses in small-scale local studies. As with other translations of measures in the health field, researchers and clinicians in Portugal must be aware of how to address bias in using the Zarit Burden Interview and interpreting findings. PMID:24813483

  3. Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study

    PubMed Central

    2014-01-01

    Background In Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic. Methods 15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/ urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis. Results MS patients were mostly unfamiliar with the term “palliative care” or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients’ complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients. Conclusion MS patients’, and health professionals’ restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group. PMID:24641905

  4. The initiative for pediatric palliative care: an interdisciplinary educational approach for healthcare professionals.

    PubMed

    Browning, David M; Solomon, Mildred Z

    2005-10-01

    There is growing empirical evidence that the U.S. healthcare system fails to meet the needs of children with life-threatening conditions and their families. The confluence of several recent developments has created a critical window of opportunity for improving clinical practice and institutional effectiveness in pediatric palliative care. This article presents an innovative, comprehensive approach to pediatric palliative care education that was developed by the Initiative for Pediatric Palliative Care, a consortium of seven academic children's hospitals, Education Development Center, the National Association of Children's Hospitals and Related Institutions, the New York Academy of Medicine, the Society of Pediatric Nursing, and the Association of Medical School Pediatric Department Chairs. The approach is based on needs assessment research with clinicians and parents and reflects a commitment to culturally respectful, family-centered care of children with life-threatening conditions. The pedagogy combines principles of adult education, includes families as teachers, and integrates affective and cognitive dimensions to enhance learning. PMID:16182092

  5. Using syringe drivers in palliative care within a rural, community setting: capturing the whole experience.

    PubMed

    Cruickshank, Susanne; Adamson, Elizabeth; Logan, Janice; Brackenridge, Katie

    2010-03-01

    The aim of this research was to understand how the introduction of a syringe driver, which is considered routine practice in many palliative care settings, impacted on patients, carers and community nurses within a rural, community setting. A phenomenological study was conducted exploring the experiences from the perspective of patients (n=4), carers (n=9) and community nurses (n=12) when syringe drivers are used at home. We interviewed patients and carers in their own homes and conducted two focus groups with community nurses who had an interest in palliative care but were not specialists. Despite the wide use of syringe drivers within palliative care, our study found their use among community nurses, particularly in rural areas can be variable with frequent time lapses between a nurse's exposure, impacting on both their technical abilities and knowledge. In-depth interviews with patients revealed few barriers to their use, but carers clearly identified areas where their expectations and experiences differed and where more information setting realistic goals of care would have been helpful. The authors conclude that although nurses require competencies related to syringe drivers, they also need an in-depth knowledge of the actions of the drugs and the likely changes which occur physiologically as patients approach the end of their life. This will ensure accurate information is delivered, and facilitate meaningful dialogue. PMID:20357705

  6. Do clinical nurse specialists in palliative care de-skill or empower general ward nurses?

    PubMed

    Mytton, Elizabeth J; Adams, Ann

    2003-02-01

    This article reports on a small-scale exploratory study looking into the relationships between specialist nurses and general nurses in acute palliative care, to establish mutual role expectations and conditions under which generalists exhibit empowered or de-skilled behaviour. The main aims were to investigate understandings of role expectation and to establish the conditions under which generalists exhibited empowered or de-skilled behaviour. Semi-structured interviews, based on a patient vignette, were conducted with eight general nurses and two specialist nurses in one UK NHS trust. It was found that generalists valued specialists' clinical knowledge and skills, especially their communication skills. However, generalists demonstrated little insight into the work methods or full job remit, particularly the educational role, of specialists. There was a common understanding of the generalist's role by both generalists and specialists. Generalists shared anxieties about palliative care. De-skilling was not reported, but generalists acknowledge 'handing over' care and a disinclination to develop challenging clinical skills. Empowerment was not found to be associated with clinical grade, but with motivation to learn about palliative care. Further research is required to verify these preliminary findings. PMID:12668941

  7. Palliative care for patients with locally advanced and metastatic non-small cell lung cancer.

    PubMed

    Simone, Charles B; Jones, Joshua A

    2013-10-01

    Non-small cell lung cancer (NSCLC) often presents at an advanced stage and can result in a significant symptomatic burden. Many patients with advanced NSCLC experience symptoms that include pain, dyspnea, cough, decreased appetite, weight loss, and depression. Early initiation of palliative care for advanced or metastatic NSCLC can reduce symptoms, improve quality of life, and prolong survival. Palliative care interventions by an interdisciplinary team focus on patient and family and address physical symptoms, illness understanding, coping, and psychosocial and spiritual distress. The addition of systemic therapy to best supportive care can further improve quality of life and prolong survival. Thoracic external beam radiation therapy beam radiotherapy is well tolerated and can improve quality of life and relieve symptoms such as hemoptysis, pain, cough, and dyspnea. For central airway obstruction, external beam radiation therapy, endobronchial brachytherapy, Nd:YAG laser therapy, and photodynamic therapy can improve symptoms. Symptomatic lung metastases to the brain, adrenal glands, and liver or compressing or impinging the spinal cord or nerve roots can also result in patient symptoms and can be managed with medical and pharmacologic interventions, radiation therapy, surgery, ablative therapy, and systemic therapy. All healthcare providers treating patients with advanced or metastatic NSCLC should make palliative care a priority by assessing for pain, dyspnea, coping and psychosocial distress, and other symptoms at each patient encounter to reduce patient morbidity, improve quality of life, and potentially prolong survival. PMID:25841390

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

    Microsoft Academic Search

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

    2011-01-01

    Background  Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients'\\u000a levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South\\u000a Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with

  9. Job Satisfaction and Emotional Distress Among Nurses Providing Palliative Care: Empirical Evidence for an Integrative Occupational Stress-Model

    Microsoft Academic Search

    Lise Fillion; Isabelle Tremblay; Manon Truchon; Denis Côté; C. Ward Struthers; Réjeanne Dupuis

    2007-01-01

    This study tested an integrative occupational stress-model with a sample of 209 palliative-care nurses who responded to a survey. Using two hierarchical regression models, including the Job Demand-Control-Support model, the Effort-Reward Imbalance model, and specific palliative care stressors and resources, results showed that best predictors of job satisfaction were job demand, effort, reward, and people-oriented culture, whereas best predictors of

  10. Maxillofacial prosthesis in a palliative care for terminally ill patient with squamous cell carcinoma

    PubMed Central

    Haralur, Satheesh B; Shah, Farhan K

    2013-01-01

    It is the god given right of every human being to appear human. – Ernest L. DaBreo. A 55-year-old man with combined surgical and radiation therapy for buccal mucosa required the prosthetic rehabilitation for full thickness facial cheek defect. Apart from the aesthetics concerns, he had several oral debilities like difficulty in speaking, eating and swallowing. Though the carcinoma is known for high rates of morbidity and mortality, it is an obligation of a prosthodontist to help the patient to have a dignified and normal social life for their remaining lifespan. Palliative dental care's main focus is to re-establish the quality of the remaining life, in addition to the alleviation of physical and psychological suffering of the far-advanced disease patients. This case report summarises the importance of maxillofacial prosthesis in a postoperative malignancy and palliative care. PMID:23813504

  11. Trends in Canadian hospital standardised mortality ratios and palliative care coding 2004–2010: a retrospective database analysis

    PubMed Central

    Chong, Christopher AKY; Nguyen, Geoffrey C; Wilcox, M Elizabeth

    2012-01-01

    Background The hospital standardised mortality ratio (HSMR), anchored at an average score of 100, is a controversial macromeasure of hospital quality. The measure may be dependent on differences in patient coding, particularly since cases labelled as palliative are typically excluded. Objective To determine whether palliative coding in Canada has changed since the 2007 national introduction of publicly released HSMRs, and how such changes may have affected results. Design Retrospective database analysis. Setting Inpatients in Canadian hospitals from April 2004 to March 2010. Patients 12?593?329 hospital discharges recorded in the Canadian Institute for Health Information (CIHI) Discharge Abstract Database from April 2004 to March 2010. Measurements Crude mortality and palliative care coding rates. HSMRs calculated with the same methodology as CIHI. A derived hospital standardised palliative ratio (HSPR) adjusted to a baseline average of 100 in 2004–2005. Recalculated HSMRs that included palliative cases under varying scenarios. Results Crude mortality and palliative care coding rates have been increasing over time (p<0.001), in keeping with the nation's advancing overall morbidity. HSMRs in 2008–2010 were significantly lower than in 2004–2006 by 8.55 points (p<0.001). The corresponding HSPR rises dramatically between these two time periods by 48.83 points (p<0.001). Under various HSMR scenarios that included palliative cases, the HSMR would have at most decreased by 6.35 points, and may have even increased slightly. Limitations Inability to calculate a definitively comparable HSMR that include palliative cases and to account for closely timed changes in national palliative care coding guidelines. Conclusions Palliative coding rates in Canadian hospitals have increased dramatically since the public release of HSMR results. This change may have partially contributed to the observed national decline in HSMR. PMID:23131397

  12. Introduction of pharmaceutical expertise in a palliative care team in Sweden

    Microsoft Academic Search

    Barbro Norrström; Ing-Britt Cannerfelt; Helen Frid; Kim Roos; Helena Ramström

    2010-01-01

    Objective This paper presents for the first time the inclusion of dispensing pharmacists, a special group of pharmacy professionals,\\u000a in a Swedish palliative care team. It also presents the drug stock management in the medication room of the clinical area\\u000a and the improvement of drug logistics. In addition to a dispensing pharmacist, a pharmacist was included in this part of

  13. Development, implementation and evaluation of a pain management and palliative care educational seminar for medical students

    PubMed Central

    Paneduro, Denise; Pink, Leah R; Smith, Andrew J; Chakraborty, Anita; Kirshen, Albert J; Backstein, David; Woods, Nicole N; Gordon, Allan S

    2014-01-01

    BACKGROUND: Despite calls for the development and evaluation of pain education programs during early medical student training, little research has been dedicated to this initiative. OBJECTIVES: To develop a pain management and palliative care seminar for medical students during their surgical clerkship and evaluate its impact on knowledge over time. METHODS: A multidisciplinary team of palliative care and pain experts worked collaboratively and developed the seminar over one year. Teaching methods included didactic and case-based instruction, as well as small and large group discussions. A total of 292 medical students attended a seminar during their third- or fourth-year surgical rotation. A 10-item test on knowledge regarding pain and palliative care topics was administered before the seminar, immediately following the seminar and up to one year following the seminar. Ninety-five percent (n=277) of students completed the post-test and 31% (n=90) completed the follow-up test. RESULTS: The mean pretest, post-test and one-year follow-up test scores were 51%, 75% and 73%, respectively. Mean test scores at post-test and follow-up were significantly higher than pretest scores (all P<0.001). No significant difference was observed in mean test scores between follow-up and post-test (P=0.559), indicating that students retained knowledge gained from the seminar. CONCLUSIONS: A high-quality educational seminar using interactive and case-based instruction can enhance students’ knowledge of pain management and palliative care. These findings highlight the feasibility of developing and implementing pain education material for medical students during their training. PMID:24851239

  14. Palliative care for dementia—time to think again?

    PubMed Central

    Crowther, J.; Wilson, K.C.M.; Horton, S.

    2013-01-01

    It is estimated that there are 35.6 million people with dementia worldwide and this is projected to increase to over 115 million by the year 2050. Dementia is a progressive neurodegenerative disease that significantly reduces survival. End-of-life care received by this group is often poor and does not equate to that offered in other life limiting illnesses. This review highlights results from a large UK study of informal carers of people with dementia to explore what are determinants of care for people with dementia and their family carers. New perspectives as to models of care for end-of-life care for patients with dementia are discussed together with how these may be implemented and delivered within wider community settings and contexts, where many people with dementia may be cared for in the future. PMID:23559557

  15. An Integrated Course in Pain Management and Palliative Care Bridging the Basic Sciences and Pharmacy Practice

    PubMed Central

    Kullgren, Justin; Unni, Elizabeth; Hanson, Eric

    2013-01-01

    Objective. To describe the development of an integrated pain and palliative care course and to investigate the long-term effectiveness of the course during doctor of pharmacy (PharmD) students’ advanced pharmacy practice experiences (APPEs) and in their practice after graduation. Design. Roseman University College of Pharmacy faculty developed a 3-week elective course in pain and palliative care by integrating relevant clinical and pharmaceutical sciences. Instructional strategies included lectures, team and individual activities, case studies, and student presentations. Assessment. Students who participated in the course in 2010 and 2011 were surveyed anonymously to gain their perception about the class as well as the utility of the course during their APPEs and in their everyday practice. Traditional and nontraditional assessment of students confirmed that the learning outcomes objectives were achieved. Conclusions. Students taking the integrated course on pain management and palliative care achieved mastery of the learning outcome objectives. Surveys of students and practicing pharmacists who completed the course showed that the learning experience as well as retention was improved with the integrated mode of teaching. Integrating basic and clinical sciences in therapeutic courses is an effective learning strategy. PMID:23966724

  16. Sustaining the cocoon: the emotional inoculation produced by complementary therapies in palliative care.

    PubMed

    Garnett, M

    2003-06-01

    The aim of this study is to explore, from a medical sociological perspective, the use of complementary therapies by palliative care nurses. This paper shows how the conceptual vocabulary developed by Giddens [Giddens A. (1990) The Consequences of Modernity. Polity Press, Cambridge; Giddens A. (1991) Modernity and Self-Identity. Polity Press, Cambridge] relating to trust, ontological security, existential anxiety and the importance of protective cocoons, facilitates understanding of the use of complementary therapies in palliative care. This is a qualitative study based on semi-structured interviews. During analysis both thematic content and narrative form of the interviews are scrutinized. Analysis shows that the concepts Giddens developed enable the use of complementary therapies to be seen in new ways. In particular, they facilitate the application of a complementary therapy being seen as an emotional inoculation. Similar to the emotional inoculation Giddens speaks about, an infant receiving from its caretaker in childhood which enables a child to have a protective cocoon which it carries round with it throughout life and can draw on when faced with difficulties, the application of a complementary therapy in palliative care can be seen in terms of a booster injection being received by an adult, from their professional caretaker, in time of particular need. This injection sustains a person's protective cocoon at a time of vulnerability. PMID:12787010

  17. Expert knowledge in palliative care on the World Wide Web: palliativedrugs.org.

    PubMed

    Gavrin, Jonathan

    2009-01-01

    In my last Internet-related article, I speculated that social networking would be the coming wave in the effort to share knowledge among experts in various disciplines. At the time I did not know that a palliative care site on the World Wide Web (WWW), palliativedrugs.com, already provided the infrastructure for sharing expert knowledge in the field. The Web site is an excellent traditional formulary but it is primarily devoted to "unlicensed" ("off-label") use of medications in palliative care, something we in the specialty often do with little to support our interventions except shared knowledge and experience. There is nothing fancy about this Web site. In a good way, its format is a throwback to Web sites of the 1990s. In only the loosest sense can one describe it as "multimedia." Yet, it provides the perfect forum for expert knowledge and is a "must see" resource. Its existing content is voluminous and reliable, filtered and reviewed by renowned clinicians and educators in the field. Although its origin and structure were not specifically designed for social or professional networking, the Web site's format makes it a natural way for practitioners around the world to contribute to an ever-growing body of expertise in palliative care. PMID:19947840

  18. [In defense of society: the invention of palliative care and the production of subjectivities].

    PubMed

    da Silva, Karen Schein; Kruse, Maria Henriqueta Luce

    2012-04-01

    This article is a theoretical reflection that is part of a study named Em Defesa da Sociedade: a invenção dos Cuidados Paliativos (In Defense of Society: the invention of Palliative Care). In order to articulate this discussion, we used the 2007edition of the Palliative Care Manual published by the World Health Organization (WHO), as we understand it is part of a body of work capable of producing subjectivities and ruling conduct. In this sense, we intend to understand how the discourses on palliative care are associated and promote the invention of a new subject that would work as a bio-political strategy in order to defend society. Based on the textual analysis of the discourse presented in the manual, with the help of the Cultural Studies framework and inspired by the works of Michel Foucault, we present one of the possible meanings derived from the readings of the WHO Guide. Thus, we observe the (re)organization and (re)invention of a subject that invests in the subjectivity of individuals and constitutes an actual framework that regulates and rules the population. PMID:22576552

  19. The lung cancer patient, the pneumologist and palliative care: a developing alliance.

    PubMed

    Blum, Torsten; Schönfeld, Nicolas

    2015-01-01

    Considerable evidence is now available on the value of palliative care for lung cancer patients in all stages and at all times during the course of the disease. However, pneumologists and their institutions seem to be widely in arrears with the implementation of palliative care concepts and the development of integrated structures. This review focuses on the available evidence and experience of various frequently unmet needs of lung cancer patients, especially psychological, social, spiritual and cultural ones. A PubMed search for evidence on these aspects of palliative care as well as on barriers to the implementation, on outcome parameters and effectiveness, and on structure and process quality was performed with a special focus on lung cancer patients. As a consequence, this review particularly draws pneumologists' attention to improving their skills in communication with the patients, their relatives and among themselves, and to establish team structures with more far-reaching competences and continuity than existing multilateral cooperations and conferences can provide. Ideally, any process of structural and procedural improvement should be accompanied by scientific evaluation and measures for quality optimisation. PMID:25359341

  20. Effect of pediatric palliative care programs on health care resource utilization and costs among children with life-threatening conditions: a systematic review of comparative studies

    PubMed Central

    Mitton, Craig; Trenaman, Logan M.; Chavoshi, Negar; Siden, Harold

    2015-01-01

    Background Pediatric palliative care is a relatively new and evolving field, and the cost of pediatric palliative care programs is unclear. We conducted a systematic review to compare inpatient health care utilization and costs among children with life-threatening conditions who have accessed a pediatric palliative care program and those who have not. Methods We searched MEDLINE, Embase, CINAHL and LILACS databases from January 2000 to July 2013, as well as the grey literature, for experimental or observational studies that compared pediatric palliative care programs with usual care. Outcomes of interest included hospital admissions, length of stay and health care costs. Results Of the 5193 records identified, we reviewed 109 in full and included 11 in our study. The overall quality of the studies was moderate to low. We observed mixed results for all outcomes. Compared with patients receiving usual care, fewer patients in the palliative care group had hospital admissions and fewer of those with cancer had planned hospital admissions. In contrast, no effects were observed regarding the overall number of hospital, emergency or outpatient admissions. Conflicting results were observed with regards to critical care utilization. Studies showed a trend toward shorter lengths of stay in hospital in the palliative care group. However, a single study that also considered inpatient time in hospice facilities found an increase in total length of stay, which showed a shift in the setting of health care utilization. We observed no conclusive trend in the effects on cost. Interpretation Evidence suggests that pediatric palliative care programs may result in a shift of utilization to other health care settings beyond hospital care. These settings should be considered when measuring resource utilization and costs. PMID:25844372

  1. The prevalence of anxiety and depression in palliative care patients with cancer in Western Australia and New South Wales

    Microsoft Academic Search

    Moira O'Connor; Kate White; Linda J Kristjanson; Kerry Cousins; Lesley Wilkes

    2010-01-01

    Objectives: To examine the prevalence and predictors of depression and anxiety in palliative care patients with cancer in Western Australia and New South Wales. Design, setting and participants: A descriptive study of 266 consecutive patients at a range of inpatient and outpatient settings including home care, hospices, and private and tertiary care hospitals in WA and NSW from 1 March

  2. OA60?Public health and palliative care mix; a ccpmedicine approach to reverse the overgrowing burden of non-communicable diseases in tanzania.

    PubMed

    Frank, Manase; Bwemero, Joel; Kalunga, Deborah; Sangu, Willy; Semeni, Segella; Hamisi, Mwanahamisi; Julius, Mwaiselage

    2015-04-01

    : Outline of the Talk: The global prevalence of non-communicable diseases has increased persistently affecting developed and developing world. In 2008 alone 14 million premature deaths were reported globally and it is projected to reach 52 million by 2030. Diagnosis of NCDs in many of the developing countries [including Tanzania] is often made late while the disease progression advances leaving a very limited chance for interventions to yield good health outcomes. A recent study [2011] conducted in Dar es Salaam, Tanzania on NCDs revealed that, around 16% of people admitted in referral hospitals had diabetes, and 88% had hypertension. The CCPmedicine is a community based private organisation that focuses on promoting healthy behaviour practices through prevention of non-communicable diseases in Tanzania by helping communities to take a leading role to promote their own health through health education, early detection of diseases, and facilitates timely disease interventions CCPmedicine approach to Public Health and Palliative Care mix in addressing the burden of NCDs in low resource countries like Tanzania has recently attracted policy makers, and practices to engage and support Palliative Care Services. In this paper we seek to share our experience of working with the private and public sectors to promote palliative care services in Tanzania. PMID:25960482

  3. Pain medicine and palliative care as an alternative to euthanasia in end-of-life cancer care.

    PubMed

    Erdek, Michael

    2015-05-01

    There exists support for euthanasia or physician-assisted suicide (PAS) in cases of terminal cancer. One of the premises for this approach is the goal of the alleviation of suffering. Do current means of pain control in the greater overall setting of palliative care serve as a desirable alternative? A contrast comparison may be drawn between the above approaches using both theological and medical sources to show that the enlightened use of both interventional and non-interventional pain medicine approaches in an integrated palliative care setting are a theologically grounded and medically feasible alternative to euthanasia or PAS in this population. Lay summary: Patients suffering from terminal cancer often have pain. Some have advocated euthanasia or physician-assisted suicide as a potential way of alleviating this suffering. Further examination of this topic, however, shows this approach may be essentially utilitarian and fail to consider the inherent value of human life. There has been significant development in recent years in the fields of pain medicine and palliative care, which afford alternate means of addressing suffering in this patient population. PMID:25999611

  4. Measuring Hospice Care: The National Hospice and Palliative Care Organization National Hospice Data Set

    Microsoft Academic Search

    Stephen R. Connor; Martha Tecca; Joan Teno

    Hospice has seen rapid growth in recent years, but there is a lack of consistency among hospices when it comes to compliance with standards of care. Consequently, hospices vary in performance and in services they provide. With state hospice organizations, the NHPCO developed a National Data Set (NDS) intended to understand demographics, practices, and outcomes; illustrate industry effectiveness; facilitate communication

  5. Measuring hospice care: the National Hospice and Palliative Care Organization National Hospice Data Set

    Microsoft Academic Search

    Stephen R. Connor; Martha Tecca; Judi LundPerson; Joan Teno

    2004-01-01

    Hospice has seen rapid growth in recent years, but there is a lack of consistency among hospices when it comes to compliance with standards of care. Consequently, hospices vary in performance and in services they provide. With state hospice organizations, the NHPCO developed a National Data Set (NDS) intended to understand demographics, practices, and outcomes; illustrate industry effectiveness; facilitate communication

  6. Are Special Ethical Guidelines Needed For Palliative Care Research?

    Microsoft Academic Search

    David J Casarett; Jason H. T Karlawish

    2000-01-01

    Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort. However, research that involves patients near the end of life creates numerous ethical challenges. Moreover, the inclusion of dying patients in

  7. [The home palliative care transition manual for the regional cooperation from the general ward at Shizuoka Red Cross Hospital].

    PubMed

    Shiraishi, Ko

    2007-12-01

    Recently, a home palliative care has been recommended for terminal stage cancer patients. However, a few clinics are available providing a home palliative care. As a result of that, there have been many cases of the terminal stage cancer patients who could not receive a peace of mind care and die peacefully at home. Home palliative care has been promoted in Shizuoka City by starting Shizuoka city regional cooperation conference of cancer management with a help from Shizuoka city medical association and the general hospital. It is important to have the knowledge and technique put into practice by clinics and home visiting nurses for a further improvement of the palliative care. In order to transfer patient smoothly, the palliative care team conference is held in the general ward and the homecare transition manual is used at the hospital. An application of homecare insurance, the visiting doctor and nurse are arranged in parallel to management of physical and psychological symptoms of the patient, the visiting doctor and nurse are arranged. Before a patient is discharged from the hospital, the meeting will be held among the ward staff, visiting nurse and the patient's family. We intervened 8 cases from April to July 2007. Six out of 8 cases were transferred to home, and 2 patients were died at home. The home care transition manual will be shared with other hospitals from now on. PMID:20443259

  8. Sickle cell disease: an opportunity for palliative care across the life span.

    PubMed

    Wilkie, Diana J; Johnson, Bonnye; Mack, A Kyle; Labotka, Richard; Molokie, Robert E

    2010-09-01

    Sickle cell disease is a chronic illness that affects patients physically and emotionally and can do so at an early age. An ecological model of palliative care that involves improved communication among the health care team, patients, and their families can be beneficial. Open and honest communication regarding advance care planning, disease management, relief of pain and other symptoms, and bereavement and grief are all important for the patient, family, and health care team. Given the multiple acute and chronic complications of sickle cell disease, an approach to care that is holistic and comprehensive may help to improve a patient's biologic function and the perceived health, functional status, and quality of life of the patient and family. PMID:20804884

  9. Sedation in palliative care – a critical analysis of 7 years experience

    PubMed Central

    Muller-Busch, H Christof; Andres, Inge; Jehser, Thomas

    2003-01-01

    Background The administration of sedatives in terminally ill patients becomes an increasingly feasible medical option in end-of-life care. However, sedation for intractable distress has raised considerable medical and ethical concerns. In our study we provide a critical analysis of seven years experience with the application of sedation in the final phase of life in our palliative care unit. Methods Medical records of 548 patients, who died in the Palliative Care Unit of GK Havelhoehe between 1995–2002, were retrospectively analysed with regard to sedation in the last 48 hrs of life. The parameters of investigation included indication, choice and kind of sedation, prevalence of intolerable symptoms, patients' requests for sedation, state of consciousness and communication abilities during sedation. Critical evaluation included a comparison of the period between 1995–1999 and 2000–2002. Results 14.6% (n = 80) of the patients in palliative care had sedation given by the intravenous route in the last 48 hrs of their life according to internal guidelines. The annual frequency to apply sedation increased continuously from 7% in 1995 to 19% in 2002. Main indications shifted from refractory control of physical symptoms (dyspnoea, gastrointestinal, pain, bleeding and agitated delirium) to more psychological distress (panic-stricken fear, severe depression, refractory insomnia and other forms of affective decompensation). Patients' and relatives' requests for sedation in the final phase were significantly more frequent during the period 2000–2002. Conclusion Sedation in the terminal or final phase of life plays an increasing role in the management of intractable physical and psychological distress. Ethical concerns are raised by patients' requests and needs on the one hand, and the physicians' self-understanding on the other hand. Hence, ethically acceptable criteria and guidelines for the decision making are needed with special regard to the nature of refractory and intolerable symptoms, patients' informed consent and personal needs, the goals and aims of medical sedation in end-of-life care. PMID:12744722

  10. Optimisation of the continuum of supportive and palliative care for patients with breast cancer in low-income and middle-income countries: executive summary of the Breast Health Global Initiative, 2014.

    PubMed

    Distelhorst, Sandra R; Cleary, James F; Ganz, Patricia A; Bese, Nuran; Camacho-Rodriguez, Rolando; Cardoso, Fatima; Ddungu, Henry; Gralow, Julie R; Yip, Cheng-Har; Anderson, Benjamin O

    2015-03-01

    Supportive care and palliative care are now recognised as critical components of global cancer control programmes. Many aspects of supportive and palliative care services are already available in some low-income and middle-income countries. Full integration of supportive and palliative care into breast cancer programmes requires a systematic, resource-stratified approach. The Breast Health Global Initiative convened three expert panels to develop resource allocation recommendations for supportive and palliative care programmes in low-income and middle-income countries. Each panel focused on a specific phase of breast cancer care: during treatment, after treatment with curative intent (survivorship), and after diagnosis with metastatic disease. The panel consensus statements were published in October, 2013. This Executive Summary combines the three panels' recommendations into a single comprehensive document covering breast cancer care from diagnosis through curative treatment into survivorship, and metastatic disease and end-of-life care. The recommendations cover physical symptom management, pain management, monitoring and documentation, psychosocial and spiritual aspects of care, health professional education, and patient, family, and caregiver education. PMID:25752564

  11. Narrative research methods in palliative care contexts: two case studies.

    PubMed

    Thomas, Carol; Reeve, Joanne; Bingley, Amanda; Brown, Janice; Payne, Sheila; Lynch, Tom

    2009-05-01

    Narrative methods have played a minor role in research with dying patients to date, and deserve to be more widely understood. This article illustrates the utility and value of these methods through the narrative analysis of semi-structured interview data gathered in a series of interviews with two terminally ill cancer patients and their spouses. The methods and findings associated with these two case studies are outlined and discussed. The authors' contention is that an analytical focus on the naturalistic storytelling of patients and informal carers can throw new light on individuals' perceived illness states and symptoms, care-related needs, behaviors, and desires. In addition, the juxtaposition of two cases that share a number of markers of risk and need at the end of life illustrates how the narrative analysis of patients' experiential accounts can assist in uncovering important distinctions between cases that are of relevance to care management. PMID:18954961

  12. The net effect: spanning diseases, crossing borders—highlights from the fourth triennial APCA conference and annual HPCA conference for palliative care

    PubMed Central

    Downing, J; Namisango, E; Kiyange, F; Luyirika, E; Gwyther, L; Enarson, S; Kampi, J; Sithole, Z; Kemigisha-Ssali, E; Masclee, M; Mukasa, I

    2013-01-01

    The African Palliative Care Association (APCA) jointly hosted its triennial palliative care conference for Africa with the Hospice and Palliative Care Association of South Africa (HPCA) on 17–20 September 2013 in Johannesburg, South Africa. At the heart of the conference stood a common commitment to see patient care improved across the continent. The theme for the conference, ‘The Net Effect: Spanning Diseases, Crossing Borders’, reflected this joint vision and the drive to remember the ‘net effect’ of our work in palliative care—that is, the ultimate impact of the care that we provide for our patients and their families across the disease and age spectrum and across the borders of African countries. The conference, held in Johannesburg, brought together 471 delegates from 34 countries. The key themes and messages from the conference are encapsulated in ten ‘C’s of commitment to political will and support at the highest levels of governance; engaging national, regional, and international bodies; collaboration; diversity; palliative care for children; planning for human resources and capacity building; palliative care integration at all levels; developing an evidence base for palliative care in Africa; using new technologies; and improved quality of care. Participants found the conference to be a forum that challenged their understanding of the topics presented, as well as enlightening in terms of applying best practice in their own context. Delegates found a renewed commitment and passion for palliative care and related health interventions for children and adults with life-limiting and life-threatening illnesses within the region. This conference highlighted many of the developments in palliative care in the region and served as a unique opportunity to bring people together and serve as a lynchpin for palliative care provision and development in Africa. The delegates were united in the fact that together we can ‘span diseases,’ ‘cross borders,’ and realise the ‘African Dream’ for palliative care. PMID:24222787

  13. WA7?Refining and sharing our methods - how to research the public health approach to palliative care?

    PubMed

    Cohen, Joachim; Sallnow, Libby; Tishelman, Carol

    2015-04-01

    : According to the WHO, public health has a mandate to: 1) Assess and monitor the health of communities and populations to identify health problems and priorities, 2) assure that all populations have access to appropriate and cost- effective care, 3) devise public policies and actions to solve identified local and national health problems and priorities. In line with this, public health has increasingly provided a framework for descriptive and epidemiological palliative care research, related to the first two mandates. Demographic, epidemiological, and sociological changes are increasingly asking for a broader public health approach to palliative care research, one that incorporates the principles of health promotion. This workshop will be led by an international collaborative group interested in how these different mandates relate to one another in developing a public health and palliative care research agenda. The first presentation will focus on the more traditional public health and epidemiological research approach and how it has addressed some public health challenges in palliative care but has missed or ignored others. The second presentation will focus on the New Public Health approach and how this has been translated into research evaluating health promoting palliative care and related interventions, but faces the major challenge of developing an appropriate thorough methodological and evidence base. The presentations will examine the contribution of each tradition and determine how they can inform and strengthen one another. The workshop will conclude with a panel discussion to engage participants to develop a research agenda for the future. PMID:25960487

  14. Palliative care: views of patients and their families

    Microsoft Academic Search

    I Higginson; A Wade; M McCarthy

    1990-01-01

    OBJECTIVE--To investigate the current problems and needs of terminally ill cancer patients and their family members, and to discover their views of hospital, community, and support team services. DESIGN--Prospective study of patients and families by questionnaire interviews in the patients' homes. SETTING--Inner London and north Kent (London suburbs). SUBJECTS--65 Patients, each with a member of their family or a career.

  15. National Hospice and Palliative Care Organization: Find a Hospice Program

    NSDL National Science Digital Library

    The National Hospice Organization, "the oldest and largest nonprofit public benefit organization devoted exclusively to hospice care," provides a simple hospice database for the US. Enter the two letter postal abbreviation of the state you are interested in (or click on an interactive map), and hospice information is retrieved by county. Each entry contains hospice name, location, phone number, and contact information. National Hospice Organization members are indicated. State hospice organization contact information is also available. The NHO site provides background on the organization itself, a section on the basics of hospice, and twenty commonly asked questions about hospice.

  16. Research priorities in geriatric palliative care: nonpain symptoms.

    PubMed

    Combs, Sara; Kluger, Benzi M; Kutner, Jean S

    2013-09-01

    Research addressing the burden, assessment, and management of nonpain symptoms associated with advanced illness in older adults is limited. While nonpain symptoms such as fatigue, sleep, dyspnea, anxiety, depression, cognitive impairment, nausea, and anorexia-cachexia are commonly noted by patients and clinicians, research quantifying their effects on quality of life, function, and other outcomes are lacking and there is scant evidence regarding management. Most available studies have focused on relatively narrow conditions (e.g., chemotherapy-induced nausea) and there are almost no data relevant to patients with multiple morbidities or multiple concurrent symptoms. Assessment and treatment of nonpain symptoms in older adults with serious illness and multiple comorbidities is compromised by the lack of data relevant to their care. Recommended research priorities address the documented high prevalence of distressing symptoms in older adults with serious illness, the unique needs of this population due to coexistence of multiple chronic conditions along with physiologic changes related to aging, the lack of evidence for effective pharmacologic and nonpharmacologic interventions, and the need for validated measures that are relevant across multiple care settings. PMID:23888305

  17. Symptoms and attitudes of 100 consecutive patients admitted to an acute hospice/palliative care unit.

    PubMed

    Ng, K; von Gunten, C F

    1998-11-01

    One hundred patients admitted to an acute hospice/palliative care unit in a U.S. teaching hospital were evaluated using a standardized data acquisition tool that assessed the presence of physical symptoms and attitudes concerning admission to such a specialty unit. Patients entering the unit between June 1995 and October 1995 completed the tool within 24 hours of admission. Symptoms reported were fatigue in 81 patients, anorexia in 70, dyspnea in 61, xerostomia in 58, cough in 52, pain in 49, confusion in 37, depression in 37, constipation in 35, nausea in 30, insomnia in 23, and vomiting in 22. Of the 59 patients and family/friends that responded to the question "How do you feel about hospice care?", 53 gave a positive response. When asked about the best aspects of the unit, the most common response related to the care the patient and family received (23 responses, 39%). We conclude that patients admitted to an acute inpatient hospice/palliative care unit have multiple symptoms and a high degree of satisfaction with the environment. PMID:9846025

  18. ACE Project ? Advocating for Clinical Excellence: Creating Change in the Delivery of Palliative Care

    PubMed Central

    Otis-Green, Shirley; Yang, Eunice; Lynne, Lisa

    2013-01-01

    Background Psychologists, social workers and spiritual care professionals report inadequate preparation to maximize their effectiveness in advocating for institutional reform to meet oncology patients' diverse bio-psychosocial-spiritual and cultural needs. This article provides an overview of the ACE Project, a National Cancer Institute, 5 year, R25-funded transdisciplinary palliative care education program designed to enhance the advocacy and leadership skills of 301 competitively selected psycho-oncology professionals. Methods ACE Project participants identified an institutional goal, refined their goals during the course and received mentorship and support throughout the subsequent year. Participants were invited to return to a Reunion Conference in year five to report on their activities, network and share the results of their change efforts. A subset of 28 ACE Project participants contributed to this OMEGA special issue. Results Participants' goals primarily focused on strategies to improve clinical care through program development and improvements in palliative care education within their institutions. Conclusions The results of this transdisciplinary leadership skills-building program for psycho-oncology professionals affirm the feasibility and perceived need for the program. See the ACE Project website (http://www.cityofhope.org/ace-project ) for additional program information. PMID:23977775

  19. A case report: veterinary palliative care and hospice for a west highland terrier with transitional cell carcinoma.

    PubMed

    Downing, Robin

    2011-05-01

    In providing palliative care and hospice in a veterinary outpatient primary care setting it is important to manage all aspects of the patient's needs as well as the primary disease process, and to understand that veterinary palliative care and hospice do not require a special degree or board certification. They only require compassion for the terminally ill patient and the human family members, a commitment to keeping patients united with their families for as long as they are comfortable, and a willingness to keep a comprehensive perspective on the patient's changing needs as death nears. PMID:21601755

  20. Prediction of Patient Survival by Healthcare Professionals in a Specialist Palliative Care Inpatient Unit: A Prospective Study

    Microsoft Academic Search

    Feargal Twomey; Norma OLeary; Tony OBrien

    2008-01-01

    Accurate prognostication is an enormous challenge for professionals caring for patients with advanced disease. Few studies have compared the prognostic accuracy of different professional groups within a hospice setting. The aim of this study was to compare the ability of 5 professional groups to estimate the survival of patients admitted to a specialist palliative care unit. No group accurately predicted

  1. Tracking the evolution of hospice palliative care in Canada: A comparative case study analysis of seven provinces

    Microsoft Academic Search

    Allison M Williams; Valorie A Crooks; Kyle Whitfield; Mary-Lou Kelley; Judy-Lynn Richards; Lily DeMiglio; Sarah Dykeman

    2010-01-01

    BACKGROUND: An aging population, rise in chronic illnesses, increase in life expectancy and shift towards care being provided at the community level are trends that are collectively creating an urgency to advance hospice palliative care (HPC) planning and provision in Canada. The purpose of this study was to analyze the evolution of HPC in seven provinces in Canada so as

  2. Demographic, Symptom, and Medication Profiles of Cancer Patients Seen by a Palliative Care Consult Team in a Tertiary Referral Hospital

    Microsoft Academic Search

    Catherine A Jenkins; Margot Schulz; John Hanson; Eduardo Bruera

    2000-01-01

    In this retrospective study, the charts of 100 consecutive cancer patients who had been referred to a palliative care consult team within a tertiary acute care hospital were reviewed. Demographic characteristics, including reason for admission and disease status upon admission, length of stay, and discharge and admission location, were recorded. Symptom acuity, cognitive status, and risk for substance abuse were

  3. Development and Evaluation of a Staff Training Program on Palliative Care for Persons with Intellectual and Developmental Disabilities

    ERIC Educational Resources Information Center

    Hahn, Joan E.; Cadogan, Mary P.

    2011-01-01

    Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop,…

  4. Impact of Timing and Setting of Palliative Care Referral on Quality of End-of-Life Care in Cancer Patients

    PubMed Central

    Hui, David; Kim, Sun Hyun; Roquemore, Joyce; Dev, Rony; Chisholm, Gary; Bruera, Edurado

    2014-01-01

    Background Limited data is available on how the timing and setting of palliative care referral can affect end-of-life care. In this retrospective cohort study, we examined how the timing and setting of palliative care (PC) referral were associated with the quality of end-of-life care. Methods All adult patients residing in the Houston area who died of advanced cancer between 9/1/2009 and 2/28/2010 and had a PC consultation were included. We retrieved data on PC referral and quality of end-of-life care indicators. Results Among 366 decedents, 120 (33%) had early PC referral (>3 months before death) and 169 (46%) were first seen as outpatients. Earlier PC referral was associated with fewer emergency room visits (39% vs. 68%, P<0.001), hospitalizations (48% vs. 81%, P<0.003), and hospital deaths (17% vs. 31%, P=0.004) in the last 30 days of life. Similarly, outpatient PC referral was associated with fewer emergency room visits (48% vs. 68%, P<0.001), hospital admissions (52% vs. 86%, P<0.001), hospital deaths (18% vs. 34%, P=0.001) and intensive care unit admissions (4% vs. 14%, P=0.001). In multivariate analysis, outpatient PC referral (odds ratio [OR]=0.42, 95% confidence interval [CI] 0.28-0.66; P<0.001) was independently associated with less aggressive end-of-life care. Male sex (OR=1.63, 95%CI 1.06-2.50; P=0.03) and hematologic malignancy (OR=2.57, 95%CI 1.18-5.59; P=0.02) were associated with more aggressive end-of-life care. Conclusion Patients referred to outpatient PC had improved end-of-life care compared to inpatient PC. Our findings support the need to increase the availability of PC clinics and to streamline the process of early referral. PMID:24967463

  5. 'Palliative care': a contradiction in terms? A qualitative study of cancer patients with a Turkish or Moroccan background, their relatives and care providers

    PubMed Central

    2010-01-01

    Background Palliative cancer care aims to improve quality of life and ultimately quality of dying, while prolonging life is not an objective anymore when death nears. The question is, however, whether these perspectives on palliative care are congruent with the perspectives of immigrant families with a Turkish or Moroccan background. Methods A qualitative design was used as we were looking for the personal views of 'very ill' cancer patients with a Turkish or Moroccan background, their family members and their Dutch care providers. We interviewed 83 people, involved in 33 cases to obtain information about their views, values and norms on 'good care'. Results The main concerns about 'good care' expressed by Turkish and Moroccan families were: maximum treatment and curative care until the end of their lives, never having hope taken away, devoted care by their families, avoiding shameful situations, dying with a clear mind and being buried in their own country. Their views conflict, to some extent, with the dominant principles in palliative care, for example, the emphasis on quality of life and advanced care planning, which includes discussing diagnosis and prognosis with the patient. Conclusions Patients and their families with a Turkish or Moroccan background often have different ideas about 'good care' than their Dutch care providers. As many of them are aiming at cure until the end of life, they find 'good palliative care' a contradiction in terms. PMID:20831777

  6. The experiences of suffering of palliative care patients in malaysia: a thematic analysis.

    PubMed

    Beng, Tan Seng; Guan, Ng Chong; Seang, Lim Kheng; Pathmawathi, Subramaniam; Ming, Moy Foong; Jane, Lim Ee; Chin, Loh Ee; Loong, Lam Chee

    2014-02-01

    A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering in 20 adult palliative care inpatients of University Malaya Medical Centre. The results were thematically analyzed. Ten basic themes were generated (1) loss and change ? differential suffering, (2) care dependence ? dependent suffering, (3) family stress ? empathic suffering, (4) disease and dying ? terminal suffering, (5) health care staff encounters ? interactional suffering, (6) hospital environment ? environmental suffering, (7) physical symptoms ? sensory suffering, (8) emotional reactions ? emotional suffering, (9) cognitive reactions ? cognitive suffering, and (10) spiritual reactions ? spiritual suffering. An existential-experiential model of suffering was conceptualized from the analysis. This model may inform the development of interventions in the prevention and management of suffering. PMID:22956340

  7. Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” in the published literature, dictionaries, and textbooks

    PubMed Central

    Hui, David; De La Cruz, Maxine; Mori, Masanori; Parsons, Henrique A.; Kwon, Jung Hye; Torres-Vigil, Isabel; Kim, Sun Hyun; Dev, Rony; Hutchins, Ronald; Liem, Christiana; Kang, Duck-Hee; Bruera, Eduardo

    2013-01-01

    Purpose Commonly used terms such as “supportive care,” “best supportive care,” “palliative care,” and “hospice care” were rarely and inconsistently defined in the palliative oncology literature. We conducted a systematic review of the literature to further identify concepts and definitions for these terms. Methods We searched MEDLINE, PsycInfo, EMBASE, and CINAHL for published peer-reviewed articles from 1948 to 2011 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. Dictionaries/textbooks were also searched. Results Nine of 32 “SC/BSC,” 25 of 182 “PC,” and 12 of 42 “HC” articles focused on providing a conceptual framework/definition. Common concepts for all three terms were symptom control and quality-of-life for patients with life-limiting illness. “SC” focused more on patients on active treatment compared to other categories (9/9 vs. 8/37) and less often involved interdisciplinary care (4/9 vs. 31/37). In contrast, “HC” focused more on volunteers (6/12 vs. 6/34), bereavement care (9/12 vs. 7/34), and community care (9/12 vs. 6/34). Both “PC” and “SC/BSC” were applicable earlier in the disease trajectory (16/34 vs. 0/9). We found 13, 24, and 17 different definitions for “SC/BSC,” “PC,” and “HC,” respectively. “SC/BSC” was the most variably defined, ranging from symptom management during cancer therapy to survivorship care. Dictionaries/textbooks showed similar findings. Conclusion We identified defining concepts for “SC/BSC,” “PC,” and “HC” and developed a preliminary conceptual framework unifying these terms along the continuum of care to help build consensus toward standardized definitions. PMID:22936493

  8. Music therapy in palliative medicine

    Microsoft Academic Search

    Lisa M. Gallagher; Molly J. Huston; Kristine A. Nelson; Declan Walsh; Anita Louise Steele

    2001-01-01

    A partnership between The Cleveland Clinic Foundation and The Cleveland Music School Settlement has resulted in music therapy becoming a standard part of the care in our palliative medicine inpatient unit. This paper describes a music therapy program and its impact on patients, their families, and staff. A service delivery model is suggested for implementation and integration of music therapy

  9. Using a LISTSERV™ to develop a community of practice in end-of-life, hospice, and palliative care social work.

    PubMed

    Murty, Susan A; Gilmore, Kaleigh; Richards, Karen A; Altilio, Terry

    2012-01-01

    An e-mail discussion group (SW-PALL-EOL) connects the growing number of social workers interested in palliative and end-of-life care. The article discusses the concept of a technology supported "Community of Practice." Using content analysis, the article shows empirically how this electronic discussion group has contributed to the growth and expansion of a Community of Practice dedicated to improving palliative and end-of-life care among social workers. Examples are provided of the topics posted by subscribers and the guidance provided by the group's facilitators. Comments indicate satisfaction with the electronic discussion group. PMID:22424385

  10. Smartphone Applications in Palliative Homecare

    PubMed Central

    Dhiliwal, Sunil R; Salins, Naveen

    2015-01-01

    Smartphone applications in healthcare delivery are a novel concept and is rapidly gaining ground in all fields of medicine. The modes of e-communications such as e-mail, short message service (SMS), multimedia messaging service (MMS) and WhatsApp in palliative care provides a means for quick tele-consultation, information sharing, cuts the waiting time and facilitates initiation of the treatment at the earliest. It also forms a means of communication with local general practitioner and local health care provider such that continuity of the care is maintained. It also minimizes needless transport of the patient to hospital, prevents needless hospitalization and investigations and minimizes cost and logistics involved in the care process. The two case studies provided highlights the use of smartphone application like WhatsApp in palliative care practice and demonstrates its utility. PMID:25709195

  11. An Analytical Framework for Delirium Research in Palliative Care Settings: Integrated Epidemiologic, Clinician-Researcher, and Knowledge User Perspectives

    PubMed Central

    Ansari, Mohammed; Hosie, Annmarie; Kanji, Salmaan; Momoli, Franco; Bush, Shirley H.; Watanabe, Sharon; Currow, David C.; Gagnon, Bruno; Agar, Meera; Bruera, Eduardo; Meagher, David J.; de Rooij, Sophia E.J.A.; Adamis, Dimitrios; Caraceni, Augusto; Marchington, Katie; Stewart, David J.

    2014-01-01

    Context Delirium often presents difficult management challenges in the context of goals of care in palliative care settings. Objectives The aim was to formulate an analytical framework for further research on delirium in palliative care settings, prioritize the associated research questions, discuss the inherent methodological challenges associated with relevant studies, and outline the next steps in a program of delirium research. Methods We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting, relevant literature searches, focused input of epidemiologic expertise, and a meeting participant and coauthor survey to formulate a conceptual research framework and prioritize research questions. Results Our proposed framework incorporates three main groups of research questions: the first was predominantly epidemiologic, such as delirium occurrence rates, risk factor evaluation, screening, and diagnosis; the second covers pragmatic management questions; and the third relates to the development of predictive models for delirium outcomes. Based on aggregated survey responses to each research question or domain, the combined modal ratings of “very” or “extremely” important confirmed their priority. Conclusion Using an analytical framework to represent the full clinical care pathway of delirium in palliative care settings, we identified multiple knowledge gaps in relation to the occurrence rates, assessment, management, and outcome prediction of delirium in this population. The knowledge synthesis generated from adequately powered, multicenter studies to answer the framework’s research questions will inform decision making and policy development regarding delirium detection and management and thus help to achieve better outcomes for patients in palliative care settings. PMID:24726762

  12. The increasing use of reiki as a complementary therapy in specialist palliative care.

    PubMed

    Burden, Barbara; Herron-Marx, Sandy; Clifford, Collette

    2005-05-01

    Palliative medicine and complementary therapies (CTs) have developed within the NHS as parallel philosophies of care. As a result, the last decade has seen an increase in the integration and usage of CTs, as adjunct therapies to conventional medical treatment. Documented benefits of relaxation, decreased perception of pain, reduced anxiety and improved sense of wellbeing have been shown to enable an enhanced quality of life, where curative treatment is no longer an option. Reiki is a more recent addition to the range of CTs available to cancer patients. As an energy-healing intervention it has gained in popularity as a non-invasive and non-pharmacological approach. Anecdotal evidence suggests that the profound relaxation effect has a positive impact on alleviating anxiety, stress, perception of pain and promotes a feeling of wellbeing particularly relating to the nature of psychospiritual wellbeing. However, there is very little evidence to support its application within clinical practice, and none within the specific field of specialist palliative care (SPC). This article will consider the position of reiki as an emerging CT within SPC. The function of the hospice movement, the role of CTs together with an understanding of energy healing will also be explored. Within this context, the rise in popularity of reiki and its potential benefits for SPC patients will be discussed. These considerations will then form the basis of the justification for further research in SPC. PMID:15944500

  13. Symptomatic therapy of dyspnea with strong opioids and its effect on ventilation in palliative care patients.

    PubMed

    Clemens, Katri Elina; Klaschik, Eberhard

    2007-04-01

    This study assessed the effect of opioid treatment on ventilation in dyspneic palliative care patients who received symptomatic treatment with strong opioids. The assessments measured changes in peripheral arterial oxygen saturation (SaO(2)), transcutaneous arterial pressure of carbon dioxide (tcPCO(2)), respiratory rate (f), and pulse rate (PF) during the titration phase with morphine or hydromorphone. The aims of the study were to verify the efficacy of opioids for the management of dyspnea, assess the effect on ventilation, and show whether nasal O(2) insufflation before opioid application leads to a decrease in the intensity of dyspnea. Eleven patients admitted to our palliative care unit were included in this prospective, nonrandomized trial. At admission, all patients suffered from dyspnea. tcPCO(2), SaO(2), and PF were measured transcutaneously by means of a SenTec Digital Monitor (SenTec AG, Switzerland). During O(2) insufflation, the intensity of dyspnea did not change. In contrast, the opioid produced a significant improvement in the intensity of dyspnea (P=0.003). Mean f decreased as early as 30 minutes after the first opioid administration, declining from 41.8+/-4.7 (35.0-50.0) to 35.5+/-4.2 (30.0-40.0), and after 90 minutes, to 25.7+/-4.5 (20.0-32.0) breaths/min. Other monitored respiratory parameters, however, showed no significant changes. There was no opioid-induced respiratory depression. PMID:17397708

  14. A Prospective Survey of Patient Drop-outs in a Palliative Care Setting

    PubMed Central

    Unni, Kumudam; Edasseri, Divakaran

    2012-01-01

    Aim: A prospective survey of patient drop-outs was carried out in a palliative care setting to understand the background of patients in the drop-out category. This was to understand the background of patients who drop out and why they drop out. Materials and Methods: The survey was conducted on 425 patients who had registered in the clinic in 2009 and subsequently persistently dropped out. Patients were classified on the basis of age, gender, education, disease, socioeconomic class, distance from clinic to home, family size, general health on the basis of symptoms on first arrival, reasons subsequently found for missing the appointment, primary caregiver details, and social support. The data were collected, and analyzed statistically using chi-square tests and percentages. Results: Majority of patients presented in the 41- to 60-year age group had secondary level education, with a family size of four. The drop-out rate was 25.06%. There was a significant association (P = 0.026) between reasons for dropping out and social support. A P-value < 0.05 shows that these are two related attributes. Yule's coefficient of association shows a negative correlation. When social support increases, the drop-out rate decreases. Majority of patients discontinued because a similar facility became available nearer their residence. Conclusion: A number of palliative care clinics have been created in the district and this has resulted in the significant drop-out rate. PMID:22837607

  15. The role of complementary indigenous Malay therapies: perspectives from palliative care patients.

    PubMed

    Lua, Pei Lin

    2011-01-01

    Although the popularity of complementary indigenous Malay therapies (CIMT) in general healthcare is undeniable in the Malaysian context today, their usage within the palliative care scenarios remains unexplored. Our study was specifically embarked to determine CIMT’s usage pattern, reasons, attitudes, beliefs, perceptions and health-related quality of life (HRQoL) differences (users vs. non-users) in a sample of hospice-based palliative patients in Selangor, Malaysia. From the 39 consenting patients (mean age = 56 years; female = 56.4 percent; Malay = 53.8 percent), 38.5 percent were users of CIMT. Dried medicinal roots, herbs and sea cucumber products were the most preferred types of CIMT (53.3 percent). The most common reason cited for usage was because these were "easier and simpler to be administered" (46.7 percent). Although users' attitudes, beliefs and perceptions were more favourable than the non-users, between 30.0-73.3 percent of users remained unsure or had no knowledge regarding CIMT. They also exhibited significantly poorer Physical Symptoms than the non-users (p=0.006), a probable motive for seeking CIMT in the first place. Despite the small sample size, the findings provided some insight into the role of CIMT especially with regard to usage trends and overall well-being among the terminally-ill, of which healthcare professionals should constantly be vigilant of amidst their routine care responsibilities. PMID:22754943

  16. Palliative Care

    Microsoft Academic Search

    R. Sean Morrison; Diane E. Meier

    2004-01-01

    An 85-year-old man with New York Heart Association class IV heart failure, hyperten- sion, and moderate Alzheimer's disease is admitted to the hospital after a hip fracture. His postoperative course is complicated by pneumonia, delirium, and pressure ulcers on his heels and sacrum. He is losing weight and is unable to participate in rehabilita- tion because of his confusion. This

  17. Palliative Care

    MedlinePLUS

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  18. Rapid spread of complex change: a case study in inpatient palliative care

    PubMed Central

    2009-01-01

    Background Based on positive findings from a randomized controlled trial, Kaiser Permanente's national executive leadership group set an expectation that all Kaiser Permanente and partner hospitals would implement a consultative model of interdisciplinary, inpatient-based palliative care (IPC). Within one year, the number of IPC consultations program-wide increased almost tenfold from baseline, and the number of teams nearly doubled. We report here results from a qualitative evaluation of the IPC initiative after a year of implementation; our purpose was to understand factors supporting or impeding the rapid and consistent spread of a complex program. Methods Quality improvement study using a case study design and qualitative analysis of in-depth semi-structured interviews with 36 national, regional, and local leaders. Results Compelling evidence of impacts on patient satisfaction and quality of care generated 'pull' among adopters, expressed as a remarkably high degree of conviction about the value of the model. Broad leadership agreement gave rise to sponsorship and support that permeated the organization. A robust social network promoted knowledge exchange and built on an existing network with a strong interest in palliative care. Resource constraints, pre-existing programs of a different model, and ambiguous accountability for implementation impeded spread. Conclusions A complex, hospital-based, interdisciplinary intervention in a large health care organization spread rapidly due to a synergy between organizational 'push' strategies and grassroots-level pull. The combination of push and pull may be especially important when the organizational context or the practice to be spread is complex. PMID:20040099

  19. The DOMUS study protocol: a randomized clinical trial of accelerated transition from oncological treatment to specialized palliative care at home

    PubMed Central

    2014-01-01

    Background The focus of Specialized Palliative Care (SPC) is to improve care for patients with incurable diseases and their families, which includes the opportunity to make their own choice of place of care and ultimately place of death. The Danish Palliative Care Trial (DOMUS) aims to investigate whether an accelerated transition process from oncological treatment to continuing SPC at home for patients with incurable cancer results in more patients reaching their preferred place of care and death. The SPC in this trial is enriched with a manualized psychological intervention. Methods/Design DOMUS is a controlled randomized clinical trial with a balanced parallel-group randomization (1:1). The planned sample size is 340 in- and outpatients treated at the Department of Oncology at Copenhagen University Hospital. Patients are randomly assigned either to: a) standard care plus SPC enriched with a standardized psychological intervention for patients and caregivers at home or b) standard care alone. Inclusion criteria are incurable cancer with no or limited antineoplastic treatment options. Discussion Programs that facilitate transition from hospital treatment to SPC at home for patients with incurable cancer can be a powerful tool to improve patients’ quality of life and support family/caregivers during the disease trajectory. The present study offers a model for achieving optimal delivery of palliative care in the patient’s preferred place of care and attempt to clarify challenges. Trial registration Clinicaltrials.gov Identifier: NCT01885637 PMID:25242890

  20. Paediatric palliative home care in areas of Germany with low population density and long distances: a questionnaire survey with general paediatricians

    PubMed Central

    2012-01-01

    Background In 2007, the patient’s right to specialised palliative home care became law in Germany. However, childhood palliative care in territorial states with low patient numbers and long distances requires adapted models to ensure an area-wide maintenance. Actually, general paediatricians are the basic care providers for children and adolescents. They also provide home care. The aim of this study was to improve the knowledge about general paediatrician’s involvement in and contribution to palliative care in children. Findings To evaluate the current status of palliative home care provided by general paediatricians and their cooperation with other paediatric palliative care providers, a questionnaire survey was disseminated to general paediatricians in Lower Saxony, a German federal state with nearly eight million inhabitants and a predominantly rural infrastructure. Data analysis was descriptive. One hundred forty one of 157 included general paediatricians completed the questionnaire (response rate: 89.8%). A total of 792 children and adolescents suffering from life-limiting conditions were cared for by these general paediatricians in 2008. Severe cerebral palsy was the most prevalent diagnosis. Eighty-nine per cent of the general paediatricians stated that they had professional experience with paediatric palliative care. Collaboration of general paediatricians and other palliative care providers was stated as not well developed. The support by a specialised team including 24-hour on-call duty and the intensification of educational programs were emphasised. Conclusions The current regional infrastructure of palliative home care in Lower Saxony can benefit from the establishment of a coordinated network of palliative home care providers. PMID:22967691

  1. A survey of chaplains' roles in pediatric palliative care: integral members of the team.

    PubMed

    Lyndes, Kathryn A; Fitchett, George; Berlinger, Nancy; Cadge, Wendy; Misasi, Jennifer; Flanagan, Erin

    2012-01-01

    To date, the field of health care chaplaincy has had little information about how pediatric palliative care (PPC) programs meet the spiritual needs of patients and families. We conducted a qualitative study consisting of surveys of 28 well-established PPC programs in the United States followed by interviews with medical directors and professional chaplains in 8 randomly selected programs among those surveyed. In this report, we describe the PPC chaplain activities, evidence regarding chaplain integration with the PPC team, and physician and chaplain perspectives on the chaplains' contributions. Chaplains described their work in terms of processes such as presence, while physicians emphasized outcomes of chaplains' care such as improved communication. Learning to translate what they do into the language of outcomes will help chaplains improve health care colleagues' understanding of chaplains' contributions to care for PPC patients and their families. In addition, future research should describe the spiritual needs and resources of PPC patients and families and examine the contribution chaplains make to improved outcomes for families and children facing life-limiting illnesses. PMID:22546048

  2. Can early introduction of specialized palliative care limit intensive care, emergency and hospital admissions in patients with severe and very severe COPD? a randomized study

    PubMed Central

    2014-01-01

    Background COPD is a progressive lung disorder with rates of mortality between 36–50%, within 2 years after admission for an acute exacerbation. While treatment with inhaled bronchodilators and steroids may partially relieve symptoms and oxygen therapy may prolong life, for many patients the course of the disease is one of inexorable decline. Very few palliative care intervention studies are available for this population. This trial seeks to determine the effectiveness of the introduction of specialized palliative care on hospital, intensive care unit and emergency admissions of patients with severe and very severe COPD. Methods/Design The study is a three year single centre, randomized controlled trial using a 2 arms parallel groups design conducted in a tertiary center (University Hospitals; Geneva). For the intervention group, an early palliative care consultation is added to standard care; the control group benefits from standard care only. Patients with COPD defined according to GOLD criteria with a stage III or IV disease and/or long term treatment with domiciliary oxygen and/or home mechanical ventilation and/or one or more hospital admissions in the previous year for an acute exacerbation are eligible to participate. Allocation concealment is achieved using randomisation by sealed envelopes. Our sample size of 90 patients/group gives the study a 80% power to detect a 20% decrease in intensive care unit and emergency admissions – the primary endpoint. All data regarding participants will be analysed by a researcher blinded to treatment allocation, according to the "Intention to treat" principle. Discussion Given the trends toward aggressive and costly care near end-of-life among patients with COPD, a timely introduction of palliative care may limit unnecessary and burdensome personal and societal costs, and invasive approaches. The results of this study may provide directions for future palliative care interventions in this particular population. Trial registration This trial has been registered at clinicaltrials.gov under NCT02223780 PMID:25927907

  3. Pain Outcomes of Inpatient Pain and Palliative Care Consultations: Differences by Race and Diagnosis

    PubMed Central

    Kuriya, Meiko; Fischberg, Daniel

    2011-01-01

    Abstract Background Pain management disparities exist among patients not receiving palliative care. We examined pain outcomes for disparities among patients receiving palliative care. Methods At a 542-bed teaching hospital in Honolulu, The Queens' Medical Center Pain and Palliative Care Department collected patient characteristics and pain severity (initial, final) for each consultation from 2005 through 2009. Analyses compared pain levels by race (white, Asian, Hawaiian/Pacific Islander [PI], other) and consultation diagnosis (cancer, noncancer medical, surgical [59% orthopedic], other). Multiple regression models analyzed factors associated with lower final pain levels and pain reduction. Results Study population included 4658 patients. No final pain was reported by more non-white patients (33%–39%) than white (27%, p<0.0001) and more cancer and noncancer medical patients (45%–54%) than surgical/other patients (20%–31%, p<0.0001). Asian (adjusted odds ratio [aOR] 1.24; 95% confidence interval [CI] 1.06–1.46; p=0.007) and PI (aOR 1.46, 95% CI 1.20–1.77, p=0.0001) races had increased likelihoods of lower final pain severity versus whites, controlling for age, gender, Karnofsky score, preconsult length of stay, and initial pain severity. Surgical diagnoses had decreased likelihood of lower final pain levels versus cancer (aOR 0.38, 95% CI 0.32–0.46, p<0.0001). Among 2304 patients reporting moderate/severe initial pain, 1738 (75.4%) reported pain reduction to mild/no final pain. PI race was associated with pain reduction versus whites (aOR 1.57, 95% CI 1.17–2.10, p=0.003). Surgical diagnoses had decreased likelihood of pain reduction vs. cancer (aOR 0.52, 95% CI 0.39–0.71, p<0.0001). Conclusion Pain outcomes were similar or better among non-white races than whites. Surgical patients reported more final pain than cancer patients. PMID:21895452

  4. Palliative care or end-of-life care in advanced chronic obstructive pulmonary disease A prospective community survey

    PubMed Central

    White, Patrick; White, Suzanne; Edmonds, Polly; Gysels, Marjolein; Moxham, John; Seed, Paul; Shipman, Cathy

    2011-01-01

    Background Calls for better end-of-life care for advanced chronic obstructive pulmonary disease (COPD) reflect the large number who die from the disease and their considerable unmet needs. Aim To determine palliative care needs in advanced COPD. Design Cross-sectional interview study in patients’ homes using structured questionnaires generated from 44 south London general practices. Method One hundred and sixty-three (61% response) patients were interviewed, mean age 72 years, 50% female, with diagnosis of COPD and at least two of: forced expiratory volume in the first second (FEV1) <40% predicted, hospital admissions or acute severe exacerbations with COPD, long-term oxygen therapy, cor pulmonale, use of oral steroids, and being housebound. Patients with advanced cancer, severe alcohol-related or mental health problems, or learning difficulties, were excluded; 145 patients were included in the analysis. Results One hundred and twenty-eight (88%) participants reported shortness of breath most days/every day, 45% were housebound, 75% had a carer. Medical records indicated that participants were at least as severe as non-participants. Eighty-two (57%) had severe breathlessness; 134 (92%) said breathlessness was their most important problem; 31 (21%) were on suboptimal treatment; 42 (30%) who were severely affected had not been admitted to hospital in the previous 2 years; 86 of 102 who had been admitted would want admission again if unwell to the same extent. None expressed existential concerns and few discussed need in terms of end-of-life care, despite severe breathlessness and impairment. Conclusion Needs in advanced COPD were considerable, with many reporting severe intractable breathlessness. Palliation of breathlessness was a priority, but discussion of need was seldom in terms of ‘end-of-life care’. PMID:21801516

  5. Be known, be available, be mutual: a qualitative ethical analysis of social values in rural palliative care

    PubMed Central

    2011-01-01

    Background Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings. PMID:21955451

  6. Relationships between the characteristics of oncohematology services providing palliative care and the sociodemographic characteristics of caregivers using health indicators: social support, perceived stress, coping strategies, and quality of work life

    Microsoft Academic Search

    Anne-Marie Pronost; Amélie Le Gouge; Daniele Leboul; Martine Gardembas-Pain; Christian Berthou; Bruno Giraudeau; Evelyne Fouquereau; Philippe Colombat

    Objective  The aim of this study was to analyze the relationships between the characteristics of the management of oncohematology services\\u000a and the psychosocial determinants of caregivers’ health at work including social support, stress, and coping strategies.\\u000a \\u000a \\u000a \\u000a \\u000a Design  Investigation using questionnaires was carried out about nurses and nurse aides in hematology and oncology services.\\u000a \\u000a \\u000a \\u000a Setting  All hematology and oncology services of Western France were

  7. The role of palliative care in the home in medical education: report from a national consensus Conference.

    PubMed

    Billings, J A; Ferris, F D; Macdonald, N; Von Gunten, C

    2001-01-01

    A working group on teaching palliative care in the home was convened at The National Consensus Conference on Medical Education for Care Near the End of Life. Our consensus statement includes: (1) a justification for education in the home; (2) general guidelines about teaching palliative care at this site; (3) identification of major barriers to training in the home, and some suggestions for overcoming these barriers; and (4) specific suggestions about how and what to teach. We find that the home is an excellent site for training in comprehensive palliative medicine. Housecalls afford an unusually rich and compelling opportunity to learn about the patient's and family's experience of severe illness and the impact of culture and environment on health care, and can have a broad humanizing effect on trainees. We propose that all medical students be familiar with this form of care. Trainees should learn the potential benefits and difficulties of managing terminal illness in the community, appreciate the role of health care teams in assuring safe, secure, high-quality care, and acquire the special knowledge, skills, and attitudes required for providing state-of-the-art palliative care for patients and families facing a terminal illness in the home, including for those dying at home. Instituting education in the home setting will require faculty development, support for more home visiting by physicians, and supervision of trainees in the home by other members of the health care team. Academic medical centers and hospice/home health agencies should collaborate to develop effective training programs. PMID:11596548

  8. The use of two common palliative outcome measures in clinical care and research: a systematic review of POS and STAS.

    PubMed

    Bausewein, C; Le Grice, C; Simon, St; Higginson, Ij

    2011-06-01

    The Palliative Care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS) are outcome measures assessing quality of care in palliative care patients. This review aims to appraise their use in clinical care and research. Five electronic databases were searched (February 2010) for original papers describing the validation or use of POS and/or STAS. Of the 83 papers included, 43 studies were on POS, 39 on STAS and one study using both. Eight STAS studies validated the original version, four an adaptation; 20 studies applied the STAS in another culture and 19 in other languages. POS papers reported included: 14 adapted POS versions, 12 translations of the POS and 15 studies of use in different cultures. Both measures have been used in cancer, HIV/AIDS and in mixed groups. POS has also been applied in neurological, kidney, pulmonary and heart disease. Both tools were used in different areas such as the evaluation of care or interventions, description of symptom prevalence and implementation of outcome measures in clinical practice. Overall, they seem to be well accepted tools for outcome measurement in palliative care, both in clinical care and research. PMID:21464119

  9. PROLONG: a cluster controlled trial to examine identification of patients with COPD with poor prognosis and implementation of proactive palliative care

    PubMed Central

    2014-01-01

    Background Proactive palliative care is not yet common practice for patients with COPD. Important barriers are the identification of patients with a poor prognosis and the organization of proactive palliative care dedicated to the COPD patient. Recently a set of indicators has been developed to identify those patients with COPD hospitalized for an acute exacerbation who are at risk for post-discharge mortality. Only after identification of these patients with poor prognosis a multi disciplinary approach to proactive palliative care with support of a specialized palliative care team can be initiated. Methods/Design The PROLONG study is a prospective cluster controlled trial in which 6 hospitals will participate. Three hospitals are selected for the intervention condition based on the presence of a specialized palliative care team. The study population consists of patients with COPD and their main informal caregivers. Patients will be included during hospitalization for an acute exacerbation. All patients in the study receive standard care (usual care). Besides, patients in the intervention condition who meet two or more criteria of the set of indicators for proactive palliative care will have additionally regular consultations with a specialized palliative care team. The objectives of the PROLONG study are: 1) to assess the discriminating power of the proposed set of indicators (indicator study) and 2) to assess the effects of proactive palliative care for qualifying patients with COPD on the wellbeing of these patients and their informal caregivers (intervention study). The primary outcome measure of the indicator study is time to death for any cause. The primary outcome measure of the intervention study is the change in quality of life measured by the St George Respiratory Questionnaire (SGRQ) three months after inclusion. Discussion The PROLONG study may lead to better understanding of the conditions to start and the effectiveness of proactive palliative care for patients with COPD. Innovative aspects of the PROLONG study are the use of a set of indicators for proactive palliative care, the active involvement of a specialized palliative care team and the use of a patient-tailored proactive palliative care plan. Trial registration Netherlands Trial Register (NTR): NTR4037 PMID:24690101

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

    PubMed Central

    2012-01-01

    Background End-of-life care research across Africa is under-resourced and under-developed. A central issue in research in end-of-life care is the measurement of effects and outcomes of care on patients and families. Little is known about the experiences of health professionals' selection and implementation of outcome measures (OM) in clinical care, research, audit, or teaching in Africa. Methods An online survey was undertaken of those using outcome measures across the region, as part of the PRISMA project. A questionnaire addressing the use of OMs was developed for a similar survey in Europe and adapted for Africa. Participants were sampled through the contacts database of APCA. Invitation emails were sent out in January 2010 and reminders in February 2010. Results 168/301 invited contacts (56%) from 24 countries responded, with 78 respondents having previously used OM (65% in clinical practice, 12% in research and 23% for both). Main reasons for not using OM were a lack of guidance/training on using and analysing OM, with 49% saying that they would use the tools if this was provided. 40% of those using OM in clinical practice used POS, and 80% used them to assess, evaluate and monitor change. The POS was also the main tool used in research, with the principle criteria for use being validation in Africa, access to the tool and time needed to complete it. Challenges to the use of tools were shortage of time and resources, lack of guidance and training for the professionals, poor health status of patients and complexity of OM. Researchers also have problems analysing OM data. The APCA African POS was the most common version of the POS used, and was reported as a valuable tool for measuring outcomes. Respondents indicated the ideal outcome tool should be short, multi-dimensional and easy to use. Conclusion This was the first survey on professionals' views on OM in Africa. It showed that the APCA African POS was the most frequently OM used. Training and support are needed to help professionals utilise OM in palliative care, and OMs have an ongoing and important role in palliative care in Africa. PMID:22221932

  11. The meaning of the lived experience of hope in patients with cancer in palliative home care.

    PubMed

    Benzein, E; Norberg, A; Saveman, B I

    2001-03-01

    The aim of this study was to illuminate the meaning of the lived experience of hope in patients with cancer in palliative home care. Narrative interviews with 11 patients were interpreted using a phenomenological-hermeneutic method, inspired by Ricoeur. The findings revealed a tension between hoping for something, that is a hope of getting cured, and living in hope, that is reconciliation and comfort with life and death. This tension is highlighted, according to the views of the French philosopher Gabriel Marcel, as a state of 'recollection'. The interviewees told of the hope of living as normally as possible and of the experience of confirmative relationships as dimensions of their lived experience of hope. These findings show that hope is a dynamic experience, important to both a meaningful life and a dignified death, for those patients suffering from incurable cancer. PMID:11301662

  12. Biofield therapies for symptom management in palliative and end-of-life care.

    PubMed

    Henneghan, Ashley M; Schnyer, Rosa N

    2015-02-01

    Terminally ill patients experience negative symptoms at end of life (EOL) that hinder well-being and quality of life (QOL). Current intervention strategies are not always effective or feasible. A focused literature review to evaluate the use of biofield therapies (ie, Therapeutic Touch, Healing Touch, and Reiki) to manage the symptoms in EOL revealed no studies on the use these therapies, specifically in this population. Evidence from studies on relevant populations (patients with cancer, elderly patients, and patients experiencing chronic pain), which addressed the outcomes relevant to palliative and EOL care (EOLC; pain levels, changes in psychological symptoms, well-being, and QOL), supports the use of biofield therapies in relieving pain, improving QOL and well-being, and reducing psychological symptoms of stress. Further research to assess the use of biofield therapies in EOLC is clearly needed. PMID:24259404

  13. Assessment of advanced practice palliative care nursing competencies in nurse practitioner students: implications for the integration of ELNEC curricular modules

    Microsoft Academic Search

    Joyce Shea; Sheila Grossman; Meredith Wallace Kazer; Jean Lange

    2010-01-01

    Advanced practice nurses (APRNs) have key roles in the care of patients who are nearing death and those living with a disabling chronic disease. This article describes a mixed-method formative assessment of 36 graduate nursing students' knowledge about and attitudes toward palliative care preliminary to curricular integration of the End-of-Life Nursing Education Consortium (ELNEC) graduate core modules. Students' knowledge about

  14. Do Hospital-Based Palliative Teams Improve Care for Patients or Families at the End of Life?

    Microsoft Academic Search

    Irene J Higginson; Ilora Finlay; Danielle M Goodwin; Alison M Cook; Kerry Hood; Adrian G. K Edwards; Hannah-Rose Douglas; Charles E Norman

    2002-01-01

    To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative meta-analysis. Ten databases were searched. This was augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Studies

  15. Patient and Caregiver Opinions of Motivational Interviewing Techniques In Role-Played Palliative Care Conversations: A Pilot Study

    PubMed Central

    Pollak, Kathryn I.; Jones, Jacqueline; Lum, Hillary D.; De La Cruz, Scott; Felton, Susanne; Gill, Arvin; Kutner, Jean S.

    2015-01-01

    Context Although many have examined the role of motivational interviewing (MI) in diverse health care encounters, no one has explored whether patients and caregivers facing serious illnesses identify specific MI techniques as helpful. Objectives The aim of this pilot study was to describe how patients and caregivers perceived MI techniques in palliative care role-play encounters. Methods About 21 patients and caregivers participated in a role-play encounter where we asked the participant to act out being ambivalent or reluctant regarding the goals of care decision. The participant met with either an MI-trained physician or a physician who was not trained in MI (usual care). After the simulated encounter, we conducted cognitive interviews (“think-aloud” protocol) asking participants to identify “helpful” or “unhelpful” things physicians said. Participants also completed a perceived empathy instrument as a fidelity test of the MI training of the physician. Results Qualitative analyses revealed that participants independently identified the following helpful communication elements that are consistent with core MI techniques: reflection and validation of values, support of autonomy and flexibility, and open questions acting as catalysts for discussion. Participants rated the MI-trained physician slightly higher on the perceived empathy scale. Conclusion This pilot study represents the first exploration of patient and caregiver perceptions of helpful techniques in palliative care conversations. Use of MI techniques shows promise for improving palliative care discussions. PMID:25701055

  16. [Musical meetings as a resource in oncologic palliative care for users of a support home].

    PubMed

    da Silva, Vladimir Araujo; Sales, Catarina Aparecida

    2013-06-01

    This was a phenomenological investigation into musical meetings, structured according to the existential analytics of Martin Heidegger, that aimed at scrutinizing the perception of patients with cancer living in a support home. Seven users of the support home of the Rede Feminina de Combate ao Cancer in Maringá, Paraná, took part in the study, during which eight musical meetings took place during the months of January and February 2011. For the purposes of data collection individual interviews were used, starting with the following question: What do these musical meetings represent to you at this time of your life? During the process of understanding the investigated phenomenon, two ontological themes emerged: a feeling of being taken care of in the musical meetings; and transcending their existential facticity. It was observed that a meeting mediated by music represents a resource in oncologic palliative care nursing; and that it brings inspiration to the patients' daily life, instilling a feeling of being cared for and giving a new meaning to their being-in-the-world. PMID:24601139

  17. Compounded drugs of value in outpatient hospice and palliative care practice.

    PubMed

    McNulty, John P; Muller, George

    2014-01-01

    A compounded preparation is needed when no commercially manufactured medication is available to adequately address a patient's medical needs. Among the greatest therapeutic challenges faced by both patients and caregivers is the treatment required by individuals who have a terminal condition. It is difficult to find evidence-based studies on the management of end-of-life situations because each patient's medical case is unique. In addition, maintaining a controlled environment for such patients is difficult. End-of-life care is multifaceted; it does not lend itself to "cookbook medicine," and people with a terminal illness are among the most vulnerable patients in need of effective and compassionate care. When those patients suffer in spite of commercially available therapies, the innovation and experience of clinicians and compounding pharmacists can often yield a solution to the most challenging treatment problems. In this article, we discuss some of the most often prescribed compounds used in outpatient hospice and palliative care to treat common conditions (wounds, pain and dyspnea, intractable cough, nausea and vomiting, depression, bladder infections caused by an indwelling catheter, rectal pain). The effectiveness of the preparations we describe is substantiated in the medical literature and by our personal experience, which together encompasses nearly 100 years of clinical practice. The medications described in this report have been shown over time to be effective. Formulations for the preparations presented in this article are provided on the International Journal of Pharmaceutical Compounding website at www.ijpc.com/webcontent. PMID:25306765

  18. Palliative care and end-of-life planning in Parkinson's disease.

    PubMed

    Walker, Richard William

    2013-04-01

    In Parkinson's disease (PD) typical "palliative care" type symptoms, such as pain, nausea, weight loss and breathlessness can occur throughout the condition, but become more prevalent in later disease stages. Pain may be specifically related to PD, e.g. dystonic pain with wearing off, but is more commonly due to other conditions. The cause can usually be elicited by a careful history and examination, and this guides intervention, both non-pharmaceutical, and pharmaceutical. For example, dystonic pain will respond best to appropriate changes to dopaminergic medication. In later disease stages people have increasing problems with swallowing, and also cognitive impairment. Impaired swallowing may lead to aspiration pneumonia, which is a common cause of hospital admission, and also death. Decisions about interventions towards the end of life, such as insertion of percutaneous endoscopic gastrostomy (PEG) tube for nutrition, can be very challenging, particularly if, as in most cases, the person with PD has not previously expressed their views upon this while they still maintained capacity to make decisions. Advance care planning (ACP) in PD should be encouraged in relation to interventions such as PEG tubes. It may also cover issues such as preferred place of death. Over recent years lower proportions of people have been dying at home, and this is especially true for PD, but home may well be where they would have preferred to die. However, there is little evidence to guide health professionals about how, when, and by whom, ACP should be approached. PMID:23328948

  19. Initiation of a multidisciplinary summer studentship in palliative and supportive care in oncology

    PubMed Central

    Fairchild, Alysa; Watanabe, Sharon; Chambers, Carole; Yurick, Janice; Lem, Lisa; Tachynski, Patty

    2012-01-01

    Purpose The optimal setting for interprofessional education (IPE) for prelicensure health care trainees is unclear, especially in a field as complex and emotionally challenging as oncology. In this article, the authors describe the initiation of the Cross Cancer Institute Multidisciplinary Summer Studentship in Palliative and Supportive Care in Oncology, a 6-week, multidisciplinary team-based clinical placement in supportive care, designed to incorporate features of best practice cooperative learning. Methods A steering committee established goals, structure, eligibility criteria, application process, funding, and a consensus approach to instruction and evaluation for the IPE program. Studentship components included mandatory and flexible clinical time, an exploratory investigation, discussion groups, and a presentation. Two senior students per iteration were selected from clinical nutrition, medicine, nursing, occupational therapy, pharmacy, physiotherapy, respiratory therapy, social work, and speech–language pathology applicants. These students completed questionnaires investigating their views of their own and others’ professions at baseline, at the end of the rotation, and 6 months after the studentship. Results Eight students from medicine, clinical nutrition, occupational therapy, physiotherapy, and speech–language pathology have participated to date. At the elective’s end, students have described a more positive view of multidisciplinary team practice, with each participating discipline perceived as both more caring and more subservient than at baseline. In general, changes in attitudes were maintained 6 months after completion of the placement. Conclusion This 6-week multidisciplinary placement is feasible, successful, and potentially transferable to other academic settings. The results of this study suggest that even over as short a period as 6 weeks, objective attitudinal and perceptual change is seen. PMID:23055742

  20. Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle (FACE): Design and Methods

    PubMed Central

    Dallas, Ronald H.; Wilkins, Megan L.; Wang, Jichuan; Garcia, Ana; Lyon, Maureen E.

    2012-01-01

    As life expectancy increases for adolescents ever diagnosed with AIDS due to treatment advances, the optimum timing of advance care planning is unclear. Left unprepared for end-of-life (EOL) decisions, families may encounter miscommunication and disagreements, resulting in families being charged with neglect, court battles and even legislative intervention. Advanced care planning (ACP) is a valuable tool rarely used with adolescents. The Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle study is a two-arm, randomized controlled trial assessing the effectiveness of a disease specific FAmily CEntered (FACE) advanced care planning intervention model among adolescents diagnosed with AIDS, aimed at relieving psychological, spiritual, and physical suffering, while maximizing quality of life through facilitated conversations about ACP. Participants will include 130 eligible dyads (adolescent and family decision-maker) from four urban cities in the United States, randomized to either the FACE intervention or a Healthy Living Control. Three 60-minute sessions will be conducted at weekly intervals. The dyads will be assessed at baseline as well as 3-, 6-, 12-, and 18-months post-intervention. The primary outcome measures will be congruence with EOL treatment preferences, decisional conflict, and quality of communication. The mediating and moderating effects of threat appraisal, HAART adherence, and spiritual struggle on the relationships among FACE and quality of life and hospitalization/dialysis use will also be assessed. This study will be the first longitudinal study of an AIDS-specific model of ACP with adolescents. If successful, this intervention could quickly translate into clinical practice. PMID:22664645

  1. What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study

    Microsoft Academic Search

    Peter Kirk; Ingrid Kirk; Linda J Kristjanson

    2004-01-01

    Objective To obtain feedback from patients receiving palliative care and their relatives from various ethnic backgrounds about their experiences of the disclosure process and their satisfaction with information sharing during the illness.Design A qualitative study with semistructured single interviews.Setting Perth, Western Australia, and Winnipeg, Manitoba, Canada.Participants 72 participants registered with palliative care: 21 patient-family dyads in Perth and 14 dyads

  2. Cancer Pain: A Critical Review of Mechanism-based Classification and Physical Therapy Management in Palliative Care

    PubMed Central

    Kumar, Senthil P

    2011-01-01

    Mechanism-based classification and physical therapy management of pain is essential to effectively manage painful symptoms in patients attending palliative care. The objective of this review is to provide a detailed review of mechanism-based classification and physical therapy management of patients with cancer pain. Cancer pain can be classified based upon pain symptoms, pain mechanisms and pain syndromes. Classification based upon mechanisms not only addresses the underlying pathophysiology but also provides us with an understanding behind patient's symptoms and treatment responses. Existing evidence suggests that the five mechanisms – central sensitization, peripheral sensitization, sympathetically maintained pain, nociceptive and cognitive-affective – operate in patients with cancer pain. Summary of studies showing evidence for physical therapy treatment methods for cancer pain follows with suggested therapeutic implications. Effective palliative physical therapy care using a mechanism-based classification model should be tailored to suit each patient's findings, using a biopsychosocial model of pain. PMID:21976851

  3. Hospice Referrals and Code Status: Outcomes of Inpatient Palliative Care Consultations Among Asian Americans and Pacific Islanders with Cancer

    PubMed Central

    Bell, Christina L.; Kuriya, Meiko; Fischberg, Daniel

    2011-01-01

    Context Intensive palliative care consultations for plan of care may reduce racial differences in end-of-life care. Objectives To compare cancer patients’ hospice referrals and code status changes after inpatient palliative care consultations by patient ethnicity and consultation intensity. Methods This observational cohort study prospectively recorded data for all adult cancer patients receiving palliative care consultations at the largest teaching hospital in Hawaii from 2005 through 2009. Chi-square analyses compared hospice referral and code status changes to “Do Not Attempt Resuscitation” by patient characteristics and consultation intensity (more intensive plan of care versus pain and/or symptom management without plan of care). Multiple logistic regression models analyzed factors associated with hospice referral and code status change. Results The 1362 consultations generated 454 (33.3%) hospice referrals and 234 (17.2%) code status changes. Controlling for age, gender, Karnofsky score and pre-consultation hospital days, Asian, Pacific Islander, and “other” ethnicities demonstrated increased likelihood of hospice referral versus whites (adjusted odds ratios [AOR] 1.46–2.34, P<0.05). Intensive plan of care consultations were strongly associated with hospice referral (AOR 3.08, 95% confidence interval [CI] 2.33–4.07, P<0.0001). Controlling for consultation intensity reduced the association between ethnicity and hospice referral (AORs 1.35–2.06, P=0.03, “other” ethnicity; P=nonsignificant, Asian and Pacific Islander). Intensive consultations were strongly associated with code status change (AOR 2.96; 95%CI 2.08–4.22, P<0.0001). Ethnicity was not significantly associated with code status change. Conclusion Consultation intensity was the strongest predictor of hospice referrals and code status changes, and reduced the ethnic variations associated with hospice referral. PMID:21514787

  4. Beyond quality of life: the meaning of death and suffering in palliative care.

    PubMed

    Balducci, Lodovico

    2010-01-01

    The majority of patients treated for cancer will have pain at some point in their journey. Suffering and death are common events in cancer patients. Palliative care has been very successful in reducing the discomfort caused by physical pain, but does not have the means to address the questions related to the meaning of suffering and death. The soothing of physical pain has helped highlighting other forms of pain, such as spiritual and existential pain, that uniformly accompany the terminal phase of the disease. Health care providers should be able to identify existential and spiritual pain for several reasons. First, because misdiagnosing these conditions may lead to inappropriate use of opioids and sedatives and may deprive both the patient and the patients family of the experience of death as an essential and irreplaceable experience of life. Second, because spiritual and existential pain may be addressed by properly trained professionals that should be involved in the management of the patients when needed. Chaplains and spiritual directors have no lesser role in the management of a patient than a cardiologist, a surgeon or a psychiatrist. Third because clinical scientists cannot close their eyes in front of one of the most common human experiences falling under their domain. Lack of training and of full understanding is a lame excuse for skirting the suffering of a person dying under our eyes. Health care providers unwilling or unable to abandon their areas of comfort and to embrace new and risky experiences are a liability for themselves, for their patients, and for the society they serve. Both spiritual and existential pain address the basic questions of human consciousness: while are we alive? Why do we die? Spiritual pain is most commonly experienced by a person who has a religious or otherwise sense of transcendence and may be helped by a hospital care trained chaplain. Existential pain is more typical of a person uninterested in a transcendent context and may be more challenging to address in the health care context. Though both may produce emotional pain, neither is by itself a form of emotional pain and cannot be fully cared for by a counselor. The clinical definition of spiritual and existential pain is evolving and so is its treatment. Classical clinical trials have little to offer for these conditions. Qualitative research in its various forms, including open ended questions, content analysis and mainly personal narrative are the most promising forms of research to comprehend spiritual and existential pain. PMID:20590348

  5. Distress of inpatients with terminal cancer in Japanese palliative care units: from the viewpoint of spirituality.

    PubMed

    Kawa, Masako; Kayama, Mami; Maeyama, Etsuko; Iba, Noriko; Murata, Hisayuki; Imamura, Yuka; Koyama, Tikayo; Mizuno, Michiyo

    2003-07-01

    A qualitative study was conducted in an attempt to improve our understanding of the spiritual distress of terminally ill cancer patients in Japan. The subjects were inpatients at four approved palliative care units in Japan. The patients were interviewed and they expressed their own experiences in which spirituality was considered to be identifiable. Literal records of the interviews were analyzed using constant comparative analyses as proposed in relation to the grounded theory approach. The analysis included 11 inpatients and a variety of expressions of distress were obtained. After the conditions of the subjects were evaluated in order to search for common factors related to distress, consciousness of the gap between the patient's aspirations and the present situation were found to cause gap-induced distress. Distress was classified into three categories: distress due to the gap between the present situation and how the individual wanted to live, how the individual wished to die, and the individual's wish to maintain relations with others. The aspirations causing the gap were then interpreted from the viewpoint of spirituality as "anchors in life" for Japanese patients with terminal cancer. It was also revealed that in patients who possessed pictures of how they wished to die as their "anchors in life" and who were in a severe physical condition, distress increased and they became confused after their physical symptoms were relieved following admission to PCU. PMID:12720072

  6. The art of healing and knowing in cancer and palliative care.

    PubMed

    Devlin, Breige

    2006-01-01

    This article examines the role of artwork in cancer and palliative care. The literature review focuses on both children and adults. One case scenario focuses on a child's reaction to his mother's illness showing his distress through painting. Artwork from children are included in the text to help demonstrate some feelings and reactions to illness. Some themes, which emerged from examination of the artwork, were isolation, anger, and lack of hope. Carers became overtly aware of the distress people were experiencing through artwork. Art depicted graphically what people were feeling and can, therefore, be considered a valuable tool in the communication process. It is useful especially when individuals are unable to express their feelings verbally. Recommendations focus on how artwork may be implemented in hospice and hospital settings and on how the environment may be made safe psychologically. The importance of the art process rather than on artistic skill is discussed. The potential for developing creativity at the end of life, when self-esteem may be low is explored. PMID:16493300

  7. Tracking the evolution of hospice palliative care in Canada: A comparative case study analysis of seven provinces

    PubMed Central

    2010-01-01

    Background An aging population, rise in chronic illnesses, increase in life expectancy and shift towards care being provided at the community level are trends that are collectively creating an urgency to advance hospice palliative care (HPC) planning and provision in Canada. The purpose of this study was to analyze the evolution of HPC in seven provinces in Canada so as to inform such planning and provision elsewhere. We have endeavoured to undertake this research out of awareness that good future planning for health and social care, such as HPC, typically requires us to first look backwards before moving forward. Methods To identify key policy and practice events in HPC in Canada, as well as describe facilitators of and barriers to progress, a qualitative comparative case study design was used. Specifically, the evolution and development of HCP in 7 strategically selected provinces is compared. After choosing the case study provinces, the grey literature was searched to create a preliminary timeline for each that described the evolution of HPC beginning in 1970. Key informants (n = 42) were then interviewed to verify the content of each provincial timeline and to discuss barriers and facilitators to the development of HPC. Upon completion of the primary data collection, a face-to-face meeting of the research team was then held so as to conduct a comparative study analysis that focused on provincial commonalities and differences. Results Findings point to the fact that HPC continues to remain at the margins of the health care system. The development of HPC has encountered structural inheritances that have both sped up progress as well as slowed it down. These structural inheritances are: (1) foundational health policies (e.g., the Canada Health Act); (2) service structures and planning (e.g., the dominance of urban-focused initiatives); and (3) health system decisions (e.g., regionalization). As a response to these inheritances, circumventions of the established system of care were taken, often out of necessity. Three kinds of circumventions were identified from the data: (1) interventions to shift the system (e.g., the role of advocacy); (2) service innovations (e.g., educational initiatives); and (3) new alternative structures (e.g., the establishment of independent hospice organizations). Overall, the evolution of HPC across the case study provinces has been markedly slow, but steady and continuous. Conclusions HPC in Canada remains at the margins of the health care system. Its integration into the primary health care system may ensure dedicated and ongoing funding, enhanced access, quality and service responsiveness. Though demographics are expected to influence HPC demand in Canada, our study confirms that concerned citizens, advocacy organizations and local champions will continue to be the agents of change that make the necessary and lasting impacts on HPC in Canada. PMID:20515491

  8. "Good idea but not feasible" – the views of decision makers and stakeholders towards strategies for better palliative care in Germany: a representative survey

    PubMed Central

    Lueckmann, Sara Lena; Behmann, Mareike; Bisson, Susanne; Schneider, Nils

    2009-01-01

    Background Statements on potential measures to improve palliative care in Germany predominantly reflect the points of view of experts from specialized palliative care organizations. By contrast, relatively little is known about the views of representatives of organizations and institutions that do not explicitly specialize in palliative care, but are involved to a relevant extent in the decision-making and policy-making processes. Therefore, for the first time in Germany, we carried out a representative study of the attitudes of a broad range of different stakeholders acting at the national or state level of the health care system. Methods 442 organizations and institutions were included and grouped as follows: patient organizations, nursing organizations, medical associations, specialized palliative care organizations, political institutions, health insurance funds and others. Using a standardized questionnaire, the participants were asked to rate their agreement with the World Health Organization's definition of palliative care (five-point scale: 1 = completely agree, 5 = completely disagree) and to evaluate 18 pre-selected improvement measures with regard to their general meaningfulness and the feasibility of their introduction into the German health care system (two-point scale: 1 = good, 2 = poor). Results The response rate was 67%. Overall, the acceptance of the aims of palliative care in the WHO definition was strong. However, the level of agreement among health insurance funds' representatives was significantly less than that among representatives of the palliative care organizations. All the improvement measures selected for evaluation were rated significantly higher in respect of their meaningfulness than of their feasibility in Germany. In detail, the meaningfulness of 16 measures was evaluated positively (70–100% participants chose the answer "good"); for six of these measures feasibility was evaluated negatively (0–30% "good"), while for the remaining ten measures feasibility was evaluated inconsistently (31–69% "good"). Conclusion The reason why potentially meaningful improvement measures are considered to be not very feasible in Germany may be the existence of barriers resulting from the high degree of fragmentation of health care provision and responsibilities. In overcoming these barriers and further improving palliative care it may be helpful that the basic understanding of the palliative care approach seems to be quite homogenous among the different groups. PMID:19622177

  9. HUMAN SERVICES Direct Care

    E-print Network

    Mountziaris, T. J.

    - ties. Federal, state and local government agencies National headquarters of non-profit organizations an internship for academic credit. Gain experience through volunteering with organizations such as crisis/nonprofit organizations Religiously-affiliated service organizations Hospitals/healthcare providers Private psychiatric

  10. Palliative care and support for persons with HIV/AIDS in 7 African countries: implementation experience and future priorities.

    PubMed

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

    2012-06-01

    To combat morbidity and mortality from the worldwide epidemic of the human immunodeficiency virus (HIV), the United States Congress implemented a President's Emergency Plan for AIDS Relief (PEPFAR) in 30 resource-limited countries to integrate combination antiretroviral therapy (ART) for both prevention and cure. Over 35% of eligible persons have been successfully treated. Initial legislation cited palliative care as an essential aspect of this plan but overall health strengthening became critical to sustainability of programming and funding priorities shifted to assure staffing for care delivery sites; laboratory and pharmaceutical infrastructure; data collection and reporting; and financial management as individual countries are being encouraged to assume control of in-country funding. Given infrastructure requisites, individual care delivery beyond ART management alone has received minimal funding yet care remains necessary for durable viral suppression and overall quality of life for individuals. Technical assistance staff of one implementing partner representing seven African countries met to clarify domains of palliative care compared with the substituted term "care and support" to understand potential gaps in on-going HIV care. They prioritized care needs as: 1) mental health (depression and other mood disorders); 2) communication skills (age-appropriate disclosure of HIV status); 3) support of care-providers (stress management for sustainability of a skilled HIV workforce); 4) Tied Priorities: symptom management in opportunistic infections; end-of-life care; spiritual history-taking; and 5) Tied Priorities: attention to grief-related needs of patients, their families and staff; and management of HIV co-morbidities. This process can inform health policy as funding transitions to new priorities. PMID:21998442

  11. Cultural understanding in the provision of supportive and palliative care: perspectives in relation to an indigenous population

    PubMed Central

    Johnston, Grace; Vukic, Adele; Parker, Skylan

    2013-01-01

    Objectives The provision of supportive and palliative care for an indigenous people in Nova Scotia, Canada, was examined to further our understanding and thereby improve cultural competency. Most of Nova Scotia's indigenous people are Mi'kmaq. The Mi'kmaq Nation lives in Atlantic Canada as well as New England in the eastern USA. Methods Themes were identified in the literature and through discussion with seven experts who have Mi'kmaq health and cultural research expertise. This paper has been reviewed and approved by two Mi'kmaq consultants who frequently speak on behalf of the Mi'kmaq people in relation to health and cultural understanding. Recommendations for non-indigenous care providers are presented. Results The themes identified focused on jurisdictional issues and cultural understanding. They are interconnected and grounded in the historic Mi'kmaq context of colonialism. Jurisdictional issues experienced by the Mi'kmaq affect access, continuity and appropriateness of care. Cultural concepts were associated with worldview, spirituality, the role of family and community relationships and communication norms, and thereby with the alignment of values and language in the provision of care. Three Mi'kmaq concepts are noted: apiksiktatulti, nemu'ltus and salite. Conclusion Through reflection on the situation of Nova Scotia's Mi'kmaq, non-indigenous healthcare providers can assess how they might increase their cultural understanding in the provision of supportive and palliative care. Recommendations relate to the health system, relationships with individual persons and direction for research. PMID:23585926

  12. Surgical Critical Care Service Orientation

    E-print Network

    Bushman, Frederic

    · Amanda Martin, CRNP · Continuity · Clinical · Compliance · Communication #12;SCCS Surgical Critical Care Service: Rhoads 5 · Geographic Coverage · Green Team ­ Rooms 5001-5012 ­ Rapid Response · Gold Team Surgery A/B · Bariatric · Transplant · Urology GOLD GREEN #12;SCCS Daily Rounds · Two SCC teams rounding

  13. Palliative care experience of US adult nephrology fellows: a national survey.

    PubMed

    Shah, Hitesh H; Monga, Divya; Caperna, April; Jhaveri, Kenar D

    2014-02-01

    Palliative care (PC) training and experience of United States (US) adult nephrology fellows was not known. It was also not clear whether nephrology fellows in the US undergo formal training in PC medicine during fellowship. To gain a better understanding of the clinical training and experience of US adult nephrology fellows in PC medicine, we conducted a national survey in March 2012. An anonymous on-line survey was sent to US adult nephrology fellows via nephrology fellowship training program directors. Fellows were asked several PC medicine experience and training questions. A total of 105 US adult nephrology fellows responded to our survey (11% response rate). Majority of the respondents (94%) were from university-based fellowship programs. Over two-thirds (72%) of the fellows had no formal PC medicine rotation during their medical school. Half (53%) of the respondents had no formal PC elective experience during residency. Although nearly 90% of the fellows had a division or department of PC medicine at their institution, only 46.9% had formal didactic PC medicine experience. Over 80% of the respondent's program did not offer formal clinical training or rotation in PC medicine during fellowship. While 90% of the responding fellows felt most comfortable with either writing dialysis orders in the chronic outpatient unit, seeing an ICU consult or writing continuous dialysis orders in the ICU, only 35% of them felt most comfortable "not offering" dialysis to a patient in the ICU with multi-organ failure. Nearly one out of five fellows surveyed felt obligated to offer dialysis to every patient regardless of benefit. Over two-thirds (67%) of the respondents thought that a formal rotation in PC medicine during fellowship would be helpful to them. To enhance clinical competency and confidence in PC medicine, a formal PC rotation during fellowship should be highly considered by nephrology training community. PMID:24059838

  14. Emotional Distress and Compassionate Responses in Palliative Care Decision-Making Consultations

    PubMed Central

    Ladwig, Susan; Norton, Sally A.; Gramling, David; Davis, J. Kelly; Metzger, Maureen; DeLuca, Jane; Gramling, Robert

    2014-01-01

    Abstract Background: Seriously ill hospitalized patients and their loved ones are frequently faced with complex treatment decisions laden with expressions of emotional distress during palliative care (PC) consultations. Little is known about these emotional expressions or the compassionate responses providers make and how common these are in PC decision-making conversations. Objectives: To describe the types and frequency of emotional distress that patients and loved ones express and how providers respond to these emotions during PC decision-making consultations with seriously ill hospitalized patients. Methods: We used a quantitative descriptive approach to analyze 71 audio-recorded inpatient PC decision-making consultations for emotional distress and clinicians' responses to those emotions using reliable and established methods. Results: A total of 69% of conversations contained at least one expression of emotional distress. The per-conversation frequency of expressions of emotional distress ranged from 1 to 10. Anxiety/fear were the most frequently encountered emotions (48.4%) followed by sadness (35.5%) and anger/frustration (16.1%). More than half of the emotions related to the patient's feelings (53.6%) and 41.9% were related to the loved ones' own emotions. The majority of emotions were moderate in intensity (65.8%) followed by strong (20.7%) and mild (13.5%). Clinicians responded to a majority of emotions with a compassionate response (75.7%) followed by those with medical content (21.9%) and very few were ignored (1.3%). Conclusions: Expressions of emotional distress are common during PC consultations and are usually met with compassionate responses by the clinician. PMID:24588656

  15. The Japan HOspice and Palliative Care Evaluation Study (J-HOPE Study): views about legalization of death with dignity and euthanasia among the bereaved whose family member died at palliative care units.

    PubMed

    Okishiro, Nao; Miyashita, Mitsunori; Tsuneto, Satoru; Sato, Kazuki; Shima, Yasuo

    2009-01-01

    There has been a debate in appropriateness of legalization of death with dignity and euthanasia in Japan. To clarify views about these issues, we conducted a large nationwide study of the bereaved whose family member died at palliative care units. The percentages of 429 bereaved family members (response rate 65%) who affirmed legal authorization were 52 for death with dignity and 45 for euthanasia and who affirmed assignment at the discretion of the physician involved were 37 for death with dignity and 38 for euthanasia. In conclusion, views about legalization of death with dignity and euthanasia among the bereaved are inconsistent. No consensus is reached as to legislation of these issues. PMID:19349457

  16. Innovative approach to providing 24/7 palliative care for children.

    PubMed

    Maynard, Linda; Lynn, Deborah

    2014-07-01

    This study outlines an innovative, English hospice-based service that provides 24/7 care for children with life-limiting conditions and their families. Operational objectives were: symptom management; open access to families and professionals; choice in place of care and of death; and collaboration to develop shared pathways and management plans. Service standards were audited through questionnaires completed by professionals and families. Findings demonstrated that the nursing team filled a critical gap and met its pre-set standards. Keys to success were: having the right level and mix of specialist and advanced skills; funded on-call arrangements; anticipatory planning; symptom management plans; and clinical supervision. Further recommendations were to develop a multi-agency workforce strategy, and to increase capacity in the children's sector to undertake academic research measuring the impacts of interventions. PMID:25004048

  17. Pediatric palliative care: use of opioids for the management of pain.

    PubMed

    Zernikow, Boris; Michel, Erik; Craig, Finella; Anderson, Brian J

    2009-01-01

    Pediatric palliative care (PPC) is provided to children experiencing life-limiting diseases (LLD) or life-threatening diseases (LTD). Sixty to 90% of children with LLD/LTD undergoing PPC receive opioids at the end of life. Analgesia is often insufficient. Reasons include a lack of knowledge concerning opioid prescribing and adjustment of opioid dose to changing requirements. The choice of first-line opioid is based on scientific evidence, pain pathophysiology, and available administration modes. Doses are calculated on a bodyweight basis up to a maximum absolute starting dose. Morphine remains the gold standard starting opioid in PPC. Long-term opioid choice and dose administration is determined by the pathology, analgesic effectiveness, and adverse effect profile. Slow-release oral morphine remains the dominant formulation for long-term use in PPC with hydromorphone slow-release preparations being the first rotation opioid when morphine shows severe adverse effects. The recently introduced fentanyl transdermal therapeutic system with a drug-release rate of 12.5 microg/hour matches the lower dose requirements of pediatric cancer pain control. Its use may be associated with less constipation compared with morphine use. Though oral transmucosal fentanyl citrate has reduced bioavailability (25%), it inherits potential for breakthrough pain management. However, the gold standard breakthrough opioid remains immediate-release morphine. Buprenorphine is of special clinical interest as a result of its different administration routes, long duration of action, and metabolism largely independent of renal function. Antihyperalgesic effects, induced through antagonism at the kappa-receptor, may contribute to its effectiveness in neuropathic pain. Methadone also has a long elimination half-life (19 [SD 14] hours) and NMDA receptor activity although dose administration is complicated by highly variable morphine equianalgesic equivalence (1 : 2.5-20). Opioid rotation to methadone requires special protocols that take this into account. Strategies to minimize adverse effects of long-term opioid treatment include dose reduction, symptomatic therapy, opioid rotation, and administration route change. Patient- or nurse-controlled analgesia devices are useful when pain is rapidly changing, or in terminal care where analgesic requirements may escalate. In this article, we present detailed pediatric pharmacokinetic and pharmacodynamic data for opioids, their indications and contraindications, as well as dose-administration regimens that include practical strategies for opioid switching and dose reduction. Additionally, we discuss the problem of hyperalgesia and the use of adjuvant drugs to support opioid therapy. PMID:19301934

  18. GPs’ views concerning spirituality and the use of the FICA tool in palliative care in Flanders: a qualitative study

    PubMed Central

    Vermandere, Mieke; Choi, Yoo-Na; De Brabandere, Heleen; Decouttere, Ruth; De Meyere, Evelien; Gheysens, Elien; Nickmans, Brecht; Schoutteten, Melanie; Seghers, Lynn; Truijens, Joachim; Vandenberghe, Stien; Van de Wiele, Sofie; Van Oevelen, Laure-Anne; Aertgeerts, Bert

    2012-01-01

    Background According to recent recommendations, healthcare professionals in palliative care should be able to perform a spiritual history-taking. Previous findings suggest that the FICA tool is feasible for the clinical assessment of spirituality. However, little is known about the views of GPs on the use of this tool. Aim To provide a solid overview of the views of Flemish GPs concerning spirituality and the use of the FICA tool for spiritual history-taking in palliative care. Design and setting Qualitative interview study in Flanders, Belgium. Method Twenty-three GPs participated in a semi-structured interview. The interviews were analysed by thematic analysis, which includes line-by-line coding and the generation of descriptive and analytical themes. Results The interviewees stated that they would keep in mind the questions of the FICA tool while having a spiritual conversation, but not use them as a checklist. The content of the tool was generally appreciated as relevant, however, many GPs found the tool too structured and prescribed, and that it limited their spontaneity. They suggested rephrasing the questions into spoken language. The perceived barriers during spiritual conversations included feelings of discomfort and fear, and the lack of time and specific training. Factors that facilitated spiritual conversations included the patients’ acceptance of their diagnosis, a trusting relationship, and respect for the patients’ beliefs. Conclusion A palliative care process with attention focused on the patient’s spirituality was generally perceived as a tough but rewarding experience. The study concludes that the FICA tool could be a feasible instrument for the clinical assessment of spirituality, provided that certain substantive and linguistic adjustments are made. Additional research is needed to find the most suitable model for spiritual history-taking, in response to the specific needs of GPs. PMID:23265232

  19. Indian Health Service: Find Health Care

    MedlinePLUS

    ... and Human Services Indian Health Service The Federal Health Program for American Indians and Alaska Natives Feedback ... Home Find Health Care Share This Page: Find Health Care IMPORTANT If you are having a health ...

  20. Massage therapy for cancer palliation and supportive care: a systematic review of randomised clinical trials

    Microsoft Academic Search

    E. Ernst

    2009-01-01

    Introduction  Massage is a popular adjunct to cancer palliation. This systematic review is aimed at critically evaluating all available\\u000a randomised clinical trials of massage in cancer palliation.\\u000a \\u000a \\u000a \\u000a Materials and methods  Six databases were searched to identify all trials of classical massage for cancer patients. Studies of other types of massage,\\u000a e.g. reflexology, aromatherapy, were excluded. Fourteen trials met all inclusion criteria.\\u000a \\u000a \\u000a \\u000a Discussion  Collectively,

  1. Awareness of palliative care among doctors of various departments in all four teaching medical colleges in a metropolitan city in Eastern India: A survey

    PubMed Central

    Bhadra, Kallol; Manir, Kazi S.; Adhikary, Arnab; Kumar, Gaurav; Manna, Amitabha; Sarkar, Shyamal K.

    2015-01-01

    Objective: To enquire about the level of awareness regarding various important aspects of palliative medicine among doctors of various departments in four Medical Colleges in Kolkata through a questionnaire. Materials and Methods: A questionnaire was developed by few members of Indian Association of Palliative Care. It was distributed, to a convenience sample of doctors who worked at various departments in all four teaching hospitals in Kolkata. The distribution and collection of questionnaires was carried out within four months. Results: The results suggested that 85% of the doctors felt that cancer was the commonest reason for the palliative care teams to be involved. Seventy four percent of the doctors mentioned that pain control was their prime job; 53% said that they are enjoying their encounter with palliative care, so far; 77% of the doctors thought breaking bad news is necessary in further decision making process; only 22% of the doctors reported the WHO ladder of pain control sequentially, 35% of the doctors believed other forms of therapies are useful in relieving pain, 35% of the doctors thought that they gave enough importance and time for pain control; 77% said that they had heard about a hospice, among them still 61% of the doctors thought that the patients should spend last days of their life at home. Thinking of the future, 92% of the doctors think that more and more people will need palliative care in the coming days. Conclusion: Amongst the doctors of various departments, there is a lack of training and awareness in palliative care. Almost all the doctors are interested and they are willing to have more training in pain control, breaking bad news, communication skills and terminal care. PMID:25861665

  2. Implementation of palliative care as a mandatory cross-disciplinary subject (QB13) at the Medical Faculty of the Heinrich-Heine-University Düsseldorf, Germany

    PubMed Central

    Schulz, Christian; Wenzel-Meyburg, Ursula; Karger, André; Scherg, Alexandra; in der Schmitten, Jürgen; Trapp, Thorsten; Paling, Andreas; Bakus, Simone; Schatte, Gesa; Rudolf, Eva; Decking, Ulrich; Ritz-Timme, Stephanie; Grünewald, Matthias; Schmitz, Andrea

    2015-01-01

    Background: By means of the revision of the Medical Licensure Act for Physicians (ÄAppO) in 2009, undergraduate palliative care education (UPCE) was incorporated as a mandatory cross sectional examination subject (QB13) in medical education in Germany. Its implementation still constitutes a major challenge for German medical faculties. There is a discrepancy between limited university resources and limited patient availabilities and high numbers of medical students. Apart from teaching theoretical knowledge and skills, palliative care education is faced with the particular challenge of imparting a professional and adequate attitude towards incurably ill and dying patients and their relatives. Project description: Against this background, an evidence-based longitudinal UPCE curriculum was systematically developed following Kern’s Cycle [1] and partly implemented and evaluated by the students participating in the pilot project. Innovative teaching methods (virtual standardised/simulated patient contacts, e-learning courses, interdisciplinary and interprofessional collaborative teaching, and group sessions for reflective self-development) aim at teaching palliative care-related core competencies within the clinical context and on an interdisciplinary and interprofessional basis. Results: After almost five years of development and evaluation, the UPCE curriculum comprises 60 teaching units and is being fully implemented and taught for the first time in the winter semester 2014/15. The previous pilot phases were successfully concluded. To date, the pilot phases (n=26), the subproject “E-learning in palliative care” (n=518) and the blended-learning elective course “Communication with dying patients” (n=12) have been successfully evaluated. Conclusion: All conducted development steps and all developed programmes are available for other palliative care educators (Open Access). The integrated teaching formats and methods (video, e-learning module, interprofessional education, group sessions for reflexive self-development) and their evaluations are intended to make a contribution to an evidence-based development of palliative care curricula in Germany. PMID:25699109

  3. Management of opioid-induced constipation for people in palliative care.

    PubMed

    Prichard, David; Bharucha, Adil

    2015-06-01

    Constipation is common in the palliative population. Opioid medications, which are frequently prescribed to this cohort, represent a significant risk factor for this condition. Opioid-induced constipation may be of such severity that opioid doses are reduced or missed, and analgesia and quality of life are therefore reduced. However, underlying chronic constipation, local and systemic disease effects, and other medications may also precipitate constipation in this population. The assessment and treatment of constipation in a palliative individual should be undertaken in a fashion similar to that used in non-palliative patients. Initial management should include minimising exposure to predisposing factors and general measures such as encouraging hydration, fibre intake and mobility. Pharmacological treatment should commence with a stool softener and a stimulant laxative. Recently published literature demonstrates that newer laxatives, including lubiprostone (a chloride channel activator) and prucalopride (a 5-HT4 receptor agonist) can effectively treat opioid-induced constipation. For patients not responding to laxatives, opioid antagonists (non-specific or peripherally acting ?-opioid receptor antagonists) can be co-prescribed with laxatives. These agents have also proven efficacy in treating opioid-induced constipation. This review discusses the recent literature regarding the management of opioid-induced constipation and provides a rational approach to assessing and managing constipation in the palliative population. PMID:26126675

  4. An Exploratory Analysis of Levels of Evidence for Articles Published in Indian Journal of Palliative Care in the years 2010-2011

    PubMed Central

    Kumar, Senthil Paramasivam; Sisodia, Vaishali

    2013-01-01

    Context: Indian Journal of Palliative Care (IJPC) provides a comprehensive multidisciplinary evidence base for an evidence-informed clinical decision making. Aims: To analyze the levels of evidence of articles published in IJPC in the years 2010-2011. Settings and Design: Systematic review of palliative care journals. Materials and Methods: Systematic review of articles was done and was scored according to Center for Evidence-Based Medicine levels of evidence into any of the five grades. The articles were categorized based upon article type, number of authors, study approach, age focus, population focus, disease focus, goals of care, domains of care, models of care, and year of publication. Statistical Analysis Used: All descriptive analysis was done using frequencies and percentiles, and association between all categorical variables was done using Chi-square test at 95% confidence interval (CI) using Statistical Package for Social Sciences (SPSS) version 16 for Windows (SPSS Inc, Chicago, IL). Results: There was a greater prevalence of low level evidence (level 4: n = 46, 51%; level 5: n = 35, 39%) among the 90 selected articles, and article type (original articles with higher level of evidence, P = 0.000), article approach (analytical studies with higher level of evidence, P = 0.000), domains of palliative care (practice-related studies with higher level of evidence, P = 0.000) and models of care (biological or psychosocial model with higher level of evidence, P = 0.044) had a significant association with the grade of levels of evidence. Association with other factors was not statistically significant (P < 0.05). Conclusions: The levels of research evidence for palliative care provided by articles published in IJPC were predominantly level 4 and level 5, and there is scope for more high quality evidence to inform palliative care decisions in the developing countries. PMID:24347908

  5. Physical compatibility of binary and ternary mixtures of morphine and methadone with other drugs for parenteral administration in palliative care.

    PubMed

    Destro, Massimo; Ottolini, Luca; Vicentini, Lorenza; Boschetti, Silvia

    2012-10-01

    The parenteral administration of combinations of drugs is often necessary in palliative medicine, particularly in the terminal stage of life, when patients are no longer able to take medication orally. The use of infusers to administer continuous subcutaneous infusions is a well-established practice in the palliative care setting and enables several drugs to be given simultaneously, avoiding the need for repeated administrations and the effects of peaks and troughs in the doses of medication. The method is also appreciated by patients and caregivers in the home care setting because the devices and infusion sites are easy to manage. Despite their frequent use, however, the mixtures of drugs adopted in clinical practice are sometimes not supported by reliable data concerning their chemical and physical compatibility. The present study investigates the chemical compatibility of binary mixtures (morphine with ketorolac) and the physical compatibility of binary (morphine or methadone with ketorolac) or ternary mixtures (morphine with ketorolac and/or haloperidol, and/or dexamethasone, and/or metoclopramide, and/or hyoscine butylbromide) with a view to reducing the aleatory nature of the empirical use of such combinations, thereby increasing their safety and clinical appropriateness. PMID:22252547

  6. Perspectives of Foster-Care Providers, Service Provicers, and Judges Regarding Privtized Foster-Care Services

    E-print Network

    Humphrey, Kristen R.; Turnbull, Ann P.; Turnbull, H. Rutherford

    2006-01-01

    Perspectives of Foster-Care Providers, Service Providers, and Judges Regarding Privatized Foster-Care Services Kristen R. Humphrey, Ann P. Turnbull, and H. Rutherford Turnbull III, University of Kansas This qualitative study examined perceptions... offoster-care providers, service providers, and juvenile- court judges regarding privatized foster-care services in Kansas. Kansas was the first state to privatize all foster care, adoption, and family-preservation services. Most states report either...

  7. Associations with the Japanese Population's Preferences for the Place of End-of-Life Care and Their Need for Receiving Health Care Services

    PubMed Central

    Yoshiuchi, Kazuhiro

    2012-01-01

    Abstract Purpose The aims of this study were to identify the associations with the Japanese population's preferences for the place of end-of-life care and their need for receiving health care services. Methods A secondary analysis of a cross-sectional nationwide survey was conducted for 2000 randomly selected Japanese people aged 40–79 years. Results A total of 1042 people (55%) responded. Regarding preferred place of care, we set the place within the choices of “Home” (preferred by 44% of respondents), “Acute Hospital” (15%), “Palliative Care Unit” (19%), “Public Nursing Home” (10%), and “Private Nursing Home” (2%). Multinomial logistic regression analysis revealed that the people who preferred “Acute Hospital” tended to have the following need compared to those who preferred “Home,” “Palliative Care Unit,” or “Nursing Home”: higher need for receiving end-of-life care not from its experienced professionals but from the same staff; higher need for using health care services in highly supported environment such as the need for being near health care staff whenever and for receiving treatment possibly until the end; and higher need for consulting nurses whenever. They had lower need for using home care services and daycare services and also lower need for instructing families about how to use insurance/public health services. Conclusions The present findings may help to develop an effective end-of-life care system in Japan considering Japanese people's need for health care services. Also, the results of this study may underscore the importance of education on receiving home care services especially for the people who presently prefer the hospital for end-of-life care. PMID:22788951

  8. Treatment decisions in palliative cancer care: Patients' preferences for involvement and doctors' knowledge about it

    Microsoft Academic Search

    D Rothenbacher; M. P Lutz; F Porzsolt

    1997-01-01

    The aim of this study was to evaluate the extent to which hospitalised patients with advanced cancer and a palliative treatment goal wanted to be involved in the process of making treatment decisions and how well their physicians actually knew their preferences for participation. 59 hospitalised patients with non-curable cancer, 86 hospitalised patients with chronic non-neoplastic disease, and 115 non-hospitalised

  9. From Child Care to Family Care: The Parent Services Handbook.

    ERIC Educational Resources Information Center

    San Francisco Foundation, CA.

    This handbook for child care centers that are expanding their support to parents of children in their programs begins by describing the Parent Services Project (PSP). The next section explains the many services available to parents and the variety of ways these services are provided at the PSP centers. Services include fun family events; parenting…

  10. The Relation Between the Timing of Palliative Care and the Frequency and Timing of Do-Not-Resuscitate Orders Among Cancer Deaths in a Tertiary Care Hospital.

    PubMed

    Alsirafy, Samy A; Mohammed, Amrallah A; Al-Zahrani, Abdullah S; Raheem, Ahmad A; El-Kashif, Amr T

    2015-08-01

    The medical records of 246 in-hospital cancer deaths were reviewed to explore the relation between palliative care (PC) timing and the frequency and timing of do-not-resuscitate (DNR) designation. The rate of DNR designation was 100% in patients referred to PC and 82% in those never referred (P < .001). Patients were grouped into 4 groups: early PC (>90 days from PC referral to death), intermediate PC (>30-90 days), late PC (?30 days), and no PC. The median DNR to death time was 96, 41, 11, and 3 days, respectively (P < .001). The proportion of intensive care unit (ICU) deaths was 0%, 1%, 3%, and 27%, respectively (P < .001). In conclusion, in a tertiary care hospital, earlier PC was associated with earlier DNR designation and less frequent ICU deaths among in-hospital cancer deaths. PMID:24671030

  11. Assessment of knowledge, attitude and practice and associated factors towards palliative care among nurses working in selected hospitals, Addis Ababa, Ethiopia

    PubMed Central

    2014-01-01

    Background To provide quality care at the end of life or for chronically sick patients, nurses must have good knowledge, attitude and practice about palliative care (PC). In Ethiopia PC is new and very little is known about the type of services offered and the readiness of nurses to provide PC. Methods A cross sectional quantitative study design was carried out using 341 nurses working in selected hospitals in Addis Ababa from January 2012 to May 2012. Systematic random sampling was the method employed to select two governmental and two non-governmental hospitals. The researchers used triangulation in their study method making use of: Frommelt’s Attitude Toward Care of the Dying (FATCOD) Scale, Palliative Care Quiz for Nursing (PCQN) and practice questions. This led to enhanced validity of the data. EPI-INFO and SPSS software statistical packages were applied for data entry and analysis. Result Of the total 365 nurses selected, a response rate of 341 (94.2%) were registered. Out of the total study participants, 104 (30.5%) had good knowledge and 259 (76%) had favorable attitude towards PC. Medical and surgical wards as well as training on PC were positively associated with knowledge of nurses. Institution, individuals’ level of education, working in medical ward and the training they took part on PC were also significantly associated with the attitude the nurses had. Nurses working in Hayat Hospital (nongovernmental) had a 71.5% chance of having unfavorable attitude towards PC than those working in Black Lion Hospital (governmental). Regarding their knowledge aspect of practice, the majority of the respondents 260 (76.2%) had poor implementation, and nearly half of the respondents had reported that the diagnosis of patients was usually performed at the terminal stage. In line with this, spiritual and medical conditions were highly taken into consideration while dealing with terminally ill patients. Conclusion The nurses had poor knowledge and knowledge aspect of practice, but their attitude towards PC was favorable. Recommendations are that due attention should be given towards PC by the national health policy and needs to be incorporated in the national curriculum of nurse education. PMID:24593779

  12. Emotional work, emotional wellbeing and professional practice: the lived experiences of women community health nurses providing palliative care in the home environment in Australia

    Microsoft Academic Search

    Jayln Rose

    2008-01-01

    This research set out to explore the relationship between emotional work, emotional wellbeing and professional practice of community nurses who provided palliative care to clients living at home. Three specific aims were investigated; the concept of emotional wellbeing; the relationship between emotional work, emotional wellbeing and professional practice; and the strategies utilised by the nurses that promote their emotional wellbeing.

  13. Does the Medical Record Cover the Symptoms Experienced by Cancer Patients Receiving Palliative Care? A Comparison of the Record and Patient Self-Rating

    Microsoft Academic Search

    Annette S Strömgren; Mogens Groenvold; Lise Pedersen; Alf K Olsen; Marianne Spile; Per Sjøgren

    2001-01-01

    The aim of this study was to investigate the extent to which the symptoms experienced by advanced cancer patients were covered by the medical records. Fifty-eight patients participated in the study. On the day of first encounter with our palliative care department, a medical history was taken, and on this or the following day, the patients completed the EORTC Quality

  14. Prognostic Factors in Advanced Cancer Patients: Evidence-Based Clinical Recommendations—A Study by the Steering Committee of the European Association for Palliative Care

    Microsoft Academic Search

    Marco Maltoni; Augusto Caraceni; Cinzia Brunelli; Bert Broeckaert; Nicholas Christakis; Steffen Eychmueller; Paul Glare; Maria Nabal; Antonio Vigano; Philip Larkin; Franco De Conno; Geoffrey Hanks; Stein Kaasa

    2005-01-01

    Purpose To offer evidence-based clinical recommendations concerning prognosis in advanced cancer patients. Methods A Working Group of the Research Network of the European Association for Palliative Care identified clinically significant topics, reviewed the studies, and assigned the level of evidence. A formal meta-analysis was not feasible because of the heterogeneity of published studies and the lack of minimal standards in

  15. Future of palliative medicine.

    PubMed

    Bhatnagar, Sushma; Gupta, Mayank

    2015-01-01

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

  16. P05.02. Non-cognitive Therapy to Alleviate Suffering in Pediatric Palliative Care: Shamanic Journeying

    PubMed Central

    Heap, Nancy

    2013-01-01

    Focus Areas: Pediatrics, Alleviating Pain Many children receiving palliative care sufffer from physical, emotional, and spiritual issues that are not adequately relieved by pharmacologic means or cognitive therapies. Children's hospitals rely upon music, art, and childlife therapies to provide a child-friendly environment that allows them to explore and express feelings in a safe and developmentally appropriate environment. The use of complementary medicine techniques such as massage, Reiki, therapeutic touch, imagery-relaxation, and acupuncture have been used in adult and pediatric palliative care. A technique that has been used less frequently is shamanic journeying in which the patient or the shaman moves into an altered state of awareness and encounters “spirits,” “power animals,” or teachers or guides who can provide information they need to complete their life work. Shamanic journeying may be done as a guided process with the assistance of drumming, rattling, or chanting, helping to propel the person on the journey. The difference between imagery-relaxation techniques/hypnosis and shamanic journeying rests in the presumed source of the information. Conventional medicine assumes that insight comes from the patient's subconscious mind. Shamans believe that the source of information derives from the energetic-spirit world surrounding us. We have explored the use of shamanic journeying to retrieve “power animals” (guardian totems) on behalf of patients and as a way for patients to access other levels of insight and teaching about their condition. Questions to be pursued for patients include “finding the meaning of the disease” or “what do I need to do to feel better or help myself?” Children may come up with remarkable responses. We believe that shamanic journeying offers an opportunity to explore a patient's spiritual and subconscious mind through a novel and enjoyable route.

  17. [Decisions around the end of life on Intensive Care: making the transition from curative to palliative treatment].

    PubMed

    van der Werf, T S; Zijlstra, J G; Ligtenberg, J J M; Tulleken, J E

    2005-04-01

    The decision to move from curative treatment to palliative care in the intensive-care situation is less related to morals and ethics than it is to the assessment of medical issues, professionalism, communication and orchestration. Treatment should be considered medically pointless if, in the view of the treating physicians, it does not offer realistic chance to return to a meaningful life. Continuing futile care can be seen as disrespectful, both to the patient, his partner and the family, as well as to the members of the ICU team. Intensivists are responsible for withholding or withdrawing life support to patients in whom further life support is considered futile and who are unable to express their wishes due to critical illness and sedation. The intensivist typically makes this type of decision after a period in which medical and other information has been collected and after intensive discussions with other medical professionals as well as the partner and family. This is based on the trust that is built up through their skill, attitude and behaviour and that is perpetuated in a continuing process of intensive communication. Conflicts should be prevented, or at least recognised early and discussed. Ifa conflict is ongoing then it should be tackled by planning a number of consecutive consultations. PMID:15835624

  18. Palliative care for patients with head and neck cancer: "I would like a quick return to a normal lifestyle".

    PubMed

    Goldstein, Nathan E; Genden, Eric; Morrison, R Sean

    2008-04-16

    Head and neck cancers constitute a diverse group of diseases including malignancies of the oral cavity, oropharynx, larynx, sinuses, and skull base. Treatment of these cancers includes a combination of surgical resection, chemotherapy, and radiation. Due to both the patterns of disease recurrence and the adverse effects of treatments, patients with head and neck cancer often have a complex and prolonged course of illness that is marked by periods of freedom from disease and symptoms interspersed with bouts of serious illness, debility, and numerous physical and psychological symptoms including pain, dysphagia, weight loss, disfigurement, depression, and xerostomia. Thus, management of this disease is best provided by an interdisciplinary team that includes individuals from the disciplines of otolaryngology, palliative care, radiation oncology, oncology, nutrition, speech, and physical and occupational therapy. Using the case of Mr K, we describe the symptoms encountered by patients with head and neck cancer and suggest options for management. We discuss the psychological aspects that affect these patients, including issues such as changes in body image, quality of life, anxiety, and guilt. Finally, we discuss the importance of the interdisciplinary team in the care of these patients and outline the roles of each team member. By providing comprehensive care to patients with malignancies of the head and neck, clinicians can increase the likelihood that patients and their families will be able to obtain the best possible outcomes and quality of life. PMID:18413876

  19. Planning Campus Health Care Services 2.

    ERIC Educational Resources Information Center

    Douglas, Bruce L.

    1975-01-01

    In a context of forecasts of major changes for America's entire health care system, colleges and universities are exploring the implications of new trends in campus health care delivery. On January 30-31, 1975, the Society for College and University Planning sponsored a workshop on "Campus Health Care Services" in Chicago to discuss such issues as…

  20. Family Day Care Provider Support Services Directory.

    ERIC Educational Resources Information Center

    Galblum, Trudi W.; Boyer-Shesol, Cathy

    This directory profiles numerous organizational support services for family day care providers in the Kansas City metropolitan area. The first chapter, on operating a family day care home, concerns licensing and registration, the processes of starting and marketing a day care business, zoning and municipal regulation, and substitute providers. The…

  1. The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review of views from patients, carers and health-care professionals

    PubMed Central

    Murtagh, Fliss EM

    2014-01-01

    Background: Primary care has the potential to play significant roles in providing effective palliative care for non-cancer patients. Aim: To identify, critically appraise and synthesise the existing evidence on views on the provision of palliative care for non-cancer patients by primary care providers and reveal any gaps in the evidence. Design: Standard systematic review and narrative synthesis. Data sources: MEDLINE, Embase, CINAHL, PsycINFO, Applied Social Science Abstract and the Cochrane library were searched in 2012. Reference searching, hand searching, expert consultations and grey literature searches complemented these. Papers with the views of patients/carers or professionals on primary palliative care provision to non-cancer patients in the community were included. The amended Hawker’s criteria were used for quality assessment of included studies. Results: A total of 30 studies were included and represent the views of 719 patients, 605 carers and over 400 professionals. In all, 27 studies are from the United Kingdom. Patients and carers expect primary care physicians to provide compassionate care, have appropriate knowledge and play central roles in providing care. The roles of professionals are unclear to patients, carers and professionals themselves. Uncertainty of illness trajectory and lack of collaboration between health-care professionals were identified as barriers to effective care. Conclusions: Effective interprofessional work to deal with uncertainty and maintain coordinated care is needed for better palliative care provision to non-cancer patients in the community. Research into and development of a best model for effective interdisciplinary work are needed. PMID:24821710

  2. Setting up home-based palliative care in countries with limited resources: a model from Sarawak, Malaysia

    PubMed Central

    Devi, B. C. R.; Corbex, M.

    2008-01-01

    Background: The provision of palliative care (PC) and opioids is difficult to ensure in remote areas in low- and middle-income countries. We describe here the set up of a home-care program in Sarawak (the Malaysian part of the Borneo Island), where half the population lives in villages that are difficult to access. Methods: The establishment of this program, initiated in 1994 by the Department of Radiotherapy of Sarawak General Hospital, consisted of training, empowering nurses, simplifying referral, facilitating access to medication, and increasing awareness among public and health professionals about PC. Results: The program has been sustainable and cost efficient, serving 936 patients in 2006. The total morphine usage in the program increased from <200 g in 1993 to >1400 g in 2006. The results show that pain medication can be provided even in remote areas with effective organization and empowerment of nurses, who were the most important determinants for the set up of this program. Education of family was also a key aspect. Conclusion: The authors believe that the experience gained in Sarawak may help other regions with low or middle resources in the set up of their PC program especially for their remote rural population. PMID:18641007

  3. 45 CFR 98.44 - Priority for child care services.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ...Priority for child care services. 98...Welfare Department of Health and Human Services...ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND...Priority for child care services. Lead...families with very low family income (considering...

  4. 45 CFR 98.44 - Priority for child care services.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ...Priority for child care services. 98...Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES...ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND...Priority for child care services. Lead...families with very low family income (considering...

  5. 45 CFR 98.44 - Priority for child care services.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ...Priority for child care services. 98...Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES...ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND...Priority for child care services. Lead...families with very low family income (considering...

  6. 45 CFR 98.44 - Priority for child care services.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ...Priority for child care services. 98...Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES...ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND...Priority for child care services. Lead...families with very low family income (considering...

  7. 42 CFR 417.531 - Hospice care services.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 2012-10-01 false Hospice care services. 417.531...CONTINUED) HEALTH MAINTENANCE ORGANIZATIONS, COMPETITIVE MEDICAL PLANS...Cost Basis § 417.531 Hospice care services. (a...of this chapter to receive hospice care services, payment...

  8. 42 CFR 417.531 - Hospice care services.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 2014-10-01 false Hospice care services. 417.531...CONTINUED) HEALTH MAINTENANCE ORGANIZATIONS, COMPETITIVE MEDICAL PLANS...Cost Basis § 417.531 Hospice care services. (a...of this chapter to receive hospice care services, payment...

  9. 42 CFR 417.531 - Hospice care services.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 2011-10-01 false Hospice care services. 417.531...PROGRAM HEALTH MAINTENANCE ORGANIZATIONS, COMPETITIVE MEDICAL PLANS...Cost Basis § 417.531 Hospice care services. (a...of this chapter to receive hospice care services, payment...

  10. 42 CFR 417.531 - Hospice care services.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 2013-10-01 false Hospice care services. 417.531...CONTINUED) HEALTH MAINTENANCE ORGANIZATIONS, COMPETITIVE MEDICAL PLANS...Cost Basis § 417.531 Hospice care services. (a...of this chapter to receive hospice care services, payment...

  11. 42 CFR 417.531 - Hospice care services.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 2010-10-01 false Hospice care services. 417.531...PROGRAM HEALTH MAINTENANCE ORGANIZATIONS, COMPETITIVE MEDICAL PLANS...Cost Basis § 417.531 Hospice care services. (a...of this chapter to receive hospice care services, payment...

  12. 45 CFR 98.44 - Priority for child care services.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ...2010-10-01 false Priority for child care services. 98.44 Section...Public Welfare DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Program Operations (Child Care Services)-Lead...

  13. 42 CFR 440.168 - Primary care case management services.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ...2010-10-01 2010-10-01 false Primary care case management services. 440.168...PROVISIONS Definitions § 440.168 Primary care case management services. (a) Primary care case management services means case...

  14. 42 CFR 440.168 - Primary care case management services.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ...2012-10-01 2012-10-01 false Primary care case management services. 440.168...PROVISIONS Definitions § 440.168 Primary care case management services. (a) Primary care case management services means case...

  15. 42 CFR 440.168 - Primary care case management services.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ...2014-10-01 2014-10-01 false Primary care case management services. 440.168...PROVISIONS Definitions § 440.168 Primary care case management services. (a) Primary care case management services means case...

  16. 42 CFR 440.168 - Primary care case management services.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ...2011-10-01 2011-10-01 false Primary care case management services. 440.168...PROVISIONS Definitions § 440.168 Primary care case management services. (a) Primary care case management services means case...

  17. 42 CFR 440.168 - Primary care case management services.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ...2013-10-01 2013-10-01 false Primary care case management services. 440.168...PROVISIONS Definitions § 440.168 Primary care case management services. (a) Primary care case management services means case...

  18. Rapid screening for depression – validation of the Brief Case-Find for Depression (BCD) in medical oncology and palliative care patients

    Microsoft Academic Search

    M Jefford; L Mileshkin; K Richards; J Thomson; J P Matthews; J Zalcberg; R Jennens; S-A McLachlan; S Wein; Y Antill; D M Clarke

    2004-01-01

    Depression in oncology patients is under-recognised and associated with poor outcomes. Screening can increase case recognition. The Brief Case-Find for Depression (BCD) is a four-question, interviewer-administered instrument that has been previously validated in a general medical setting. The primary aim of this study was to validate the BCD in a medical oncology\\/palliative care setting, primarily by comparing its association with

  19. The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial.

    PubMed

    Aoun, Samar M; Grande, Gunn; Howting, Denise; Deas, Kathleen; Toye, Chris; Troeung, Lakkhina; Stajduhar, Kelli; Ewing, Gail

    2015-01-01

    Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers' needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain. PMID:25849348

  20. The Impact of the Carer Support Needs Assessment Tool (CSNAT) in Community Palliative Care Using a Stepped Wedge Cluster Trial

    PubMed Central

    Aoun, Samar M.; Grande, Gunn; Howting, Denise; Deas, Kathleen; Toye, Chris; Troeung, Lakkhina; Stajduhar, Kelli; Ewing, Gail

    2015-01-01

    Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers’ needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain. PMID:25849348

  1. Palliative Reconstructive Surgery: Contextualizing Palliation in Resource-Poor Settings

    PubMed Central

    Nthumba, Peter M.

    2014-01-01

    Introduction. Palliative care in Kenya and the larger Sub-Saharan Africa is considered a preserve of hospices, where these exist. Surgical training does not arm the surgeon with the skills needed to deal with the care of palliative patients. Resource constraints demand that the surgeon be multidiscipline trained so as to be able to adequately address the needs of a growing population of patients that could benefit from surgical palliation. Patients and Methods. The author describes his experience in the management of a series of 31 palliative care patients, aged 8 to 82 years. There were a total of nine known or presumed mortalities in the first year following surgery; 17 patients experienced an improved quality of life for at least 6 months after surgery. Fourteen of these were disease-free at 6 months. Conclusion. Palliative reconstructive surgery is indicated in a select number of patients. Although cure is not the primary intent of palliative surgery, the potential benefits of an improved quality of life and the possibility of cure should encourage a more proactive role for the surgeon. The need for palliative care can be expected to increase significantly in Africa, with the estimated fourfold increase of cancer patients over the next 50 years. PMID:25530878

  2. Supportive and Palliative Care Research Clinical Trials | Division of Cancer Prevention

    Cancer.gov

    Trial of Individual Psychosocial Interventions for Cancer Patients enhanced usual care (EUC), standard Individual Supportive Psychotherapy (ISP), Individual Meaning-Centered Psychotherapy (IMCP) NCT01323309 Memorial Sloan Kettering Cancer Center.

  3. Hospital Deaths of People Aged 90 and Over: End-of-Life Palliative Care Management

    Microsoft Academic Search

    Francesc Formiga; Alfons López-Soto; Margarita Navarro; Antoni Riera-Mestre; Xavier Bosch; Ramón Pujol

    2008-01-01

    Background: In developed countries, hospital deaths at very advanced age are increasingly common.Few studies have addressed end-of-life care in very elderly patients with non-cancer chronic diseases. Objective: To evaluate the circumstances related to end-stage death of non-cancer nonagenarians in an acute care hospital. The results were compared with those from a sample of younger patients. Methods: We conducted a prospective

  4. A pilot study into the use of a multisensory environment (Snoezelen) within a palliative day-care setting.

    PubMed

    Schofield, Patricia; Payne, Sheila

    2003-03-01

    Sensory environments may potentially provide an atmosphere of calm and refreshment. This small pilot study used a randomized controlled trial (RCT) design and semi-structured interviews to investigate the use of the Snoezelen multisensory environment in palliative day care. Its second aim was to explore the feasibility of the RCT design in advance of a possible larger trial. The study compared Snoezelen with a normal 'quiet room' setting. Following screening for anxiety, 26 patients were recruited and randomly assigned to the control of experimental group. Anxiety and depression were assessed using the Hospital Anxiety and Depression scale and quality of life assessed using the European Organisation for Research and Treatment of Cancer Core 30 questionnaire. A significant reduction in anxiety was seen with the experimental group (P=0.01) but no changes were observed in any of the quality-of-life subscales. However, the results should be viewed with caution, as there were some differences between the groups in two of the quality-of-life subscales. Data from semi-structured interviews suggested Snoezelen might promote relaxation. It is concluded that Snoezelen is feasible for use with this patient group and recommendations are made for further research. PMID:12682575

  5. Healing, Medical Care, and Health Service Organizations

    Microsoft Academic Search

    William E. Lafferty

    2004-01-01

    This paper reviews the reasons for disappointing health results from U.S. medical care, and prescribes val- ues for health service organizations (HSOs) that will provide a foundation for better medicine. Although the United States spends more money that any other country in the world on medical care, it ranks twenty-sixth in major indicators of population health. One reason for this

  6. Counseling Services in Adult Day Care Centers.

    ERIC Educational Resources Information Center

    Zaki, Gamal; Zaki, Sylvia

    Federal support for adult day care centers began in the United States approximately 10 years ago. To examine the counseling practices in the adult day care centers across the country and to explore how the services are affected by the staffing patterns at these centers, 135 centers completed a questionnaire. The questionnaire addressed…

  7. Away from home: experiences of Mexican American families in pediatric palliative care.

    PubMed

    Contro, Nancy; Davies, Betty; Larson, Judith; Sourkes, Barbara

    2010-01-01

    In this study, the authors describe the experiences of Mexican American family members who immigrated to the United States and then experienced the death of a child. Participants described difficulties they encountered crossing the border, leaving the culture of their homeland, and then caring for a seriously ill child. Key themes that characterized their experience of being far from home included a backdrop of poverty, absence of traditional social support, and challenges caring for healthy siblings. Participants made comparisons between health care in Mexico and the United States and assessed the trade-off they made to come to the United States, discussing access to medical care and how they were able to relate to health care providers. Further, participants conveyed how rituals from their home country were important in maintaining connections with the child who died. Based on these themes, clinical implications and strategies that focus on understanding participants' experiences with past traumas, communication and literacy needs, and the challenges of living in poverty--especially with a critically ill child--are needed. PMID:21132599

  8. End-of-Life and Palliative Care on the Wards - Survival Week, 2008 Matthew Ellman, MD, Director, End of Life Care Skills Training 1. Key Points: ? End-of-Life (EoL) care communication and assessment are as important as other skills you are learning during survival week. ? As a medical student on the wards, you will have opportunities to begin to develop your skills in palliative and end-of-life care. ? Learning to just be present and become more comfortable with patients at EoL and attend to the needs of the dying is crucial. Your presence alone can make a big difference with patients. 2. Skill-building opportunities during 3 rd year: ? Ward Based EoL care assignment: gain comfort communicating and assessing patients at end of life on the wards and share self-reflections in conference. You will evaluate a patient you are caring for on ANY CLERKSHIP. Case

    Microsoft Academic Search

    Karen Jubanik; Matthew Ellman; Peggy Bia; Grace Jeng; Ken Miller; Julie Rosenbaum; Mark Siegel; Steven Wolfson; Michael Berman; Maddie DeRosa; Larry Solomon; Megan McCabe; Kristen Wilkins; Gary Kopf; Melissa Perkal

    conference takes place on Psychiatry clerkship. Required for 3 rd year. ? Interdisciplinary Palliative Care Project: learn principles of pain and non-pain symptom management, spiritual and cultural aspects of palliative care, and how to work on inter-disciplinary team. Program of on-line interactive cases followed by workshops on Med 2 and Emergency Med. ? \\

  9. Sequential occurrence of dyspnea at the end of life in palliative care, according to the underlying cancer

    PubMed Central

    Guirimand, Frédéric; Sahut d'izarn, Marine; Laporte, Lucy; Francillard, Marie; Richard, Jean-François; Aegerter, Philippe

    2015-01-01

    Dyspnea is a symptom that severely affects the quality of life of terminally ill patients. Its frequency differs considerably between studies. We aimed to characterize the frequency of dyspnea in a palliative care hospital (PCH) and to identify factors predisposing to dyspnea, particularly during the very last days of life, as a function of the underlying disease. Episodes of dyspnea were identified by the computerized extraction of prospectively collected data from the reports of care assistants or from medical observations recorded in the medical files for all stays at our PCH during the last 6 years. There were 6455 hospital stays, 88% ending in the death of the patient; 13,282 episodes of dyspnea were recorded during 2608 hospital stays (40%). Dyspnea was more frequently observed in cases of cancer than in other conditions (RR = 1.30; 95% CI: 1.14–1.48). Pulmonary metastasis increased the risk of dyspnea from 37% to 51% (RR = 1.37; 95% CI: 1.29–1.46). Dyspnea frequency varied with the primary cancer site, from 24% (brain cancer) to 60% (esophageal cancer). The data for cancer patients staying for more than 6 days who subsequently died indicated that 8% of patients experienced dyspnea exclusively during the last 4 days of the life, independently of the site of the primary cancer. Dyspnea during the last few days of life requires systematic assessment. Exclusively terminal dyspnea should be distinguished from more precocious dyspnea, as the pathophysiological mechanisms and treatments of these two forms are probably different. PMID:25644607

  10. Away from Home: Experiences of Mexican American Families in Pediatric Palliative Care

    Microsoft Academic Search

    Nancy Contro; Betty Davies; Judith Larson; Barbara Sourkes

    2010-01-01

    In this study, the authors describe the experiences of Mexican American family members who immigrated to the United States and then experienced the death of a child. Participants described difficulties they encountered crossing the border, leaving the culture of their homeland, and then caring for a seriously ill child. Key themes that characterized their experience of being far from home

  11. Noninvasive positive pressure ventilation in critical and palliative care settings: Understanding the goals of therapy

    Microsoft Academic Search

    J. Randall Curtis; Deborah J. Cook; Tasnim Sinuff; Douglas B. White; Nicholas Hill; Sean P. Keenan; Joshua O. Benditt; Robert Kacmarek; Karin T. Kirchhoff; Mitchell M. Levy

    2007-01-01

    Objective: Although noninvasive positive pressure ventilation (NPPV) is a widely accepted treatment for some patients with acute respiratory failure, the use of NPPV in patients who have decided to forego endotracheal intubation is controversial. There- fore, the Society of Critical Care Medicine charged this Task Force with developing an approach for considering use of NPPV for patients who choose to

  12. What is the risk of distress in palliative care survey research?

    Microsoft Academic Search

    Jennifer Takesaka; Roxane Crowley; David Casarett

    2004-01-01

    To determine whether caregivers believe that interviews about end-of-life care are distressing and to identify patient and respondent characteristics associated with an increased risk of distress, distress was assessed in four studies that used family interviews. The setting was four Medicare certified hospice organizations, the University of Pennsylvania Memory Disorders Clinic, and two nursing homes, and participants included 296 family

  13. Collaborative Communication in Pediatric Palliative Care: A Foundation for Problem-Solving and Decision-Making

    PubMed Central

    Feudtner, Chris

    2007-01-01

    Summary In an ideal world, all of us – patients, parents, family members, nurses, physicians, social workers, therapists, pastoral care workers, and others – would always work together in a collaborative manner to provide the best care possible to the patient: this article is committed to this ideal. The chapter will base the frameworks and suggestions in part upon studies of communication between patients, families, and clinicians, as well as more general works on communication, collaboration, decision-making, mediation, and ethics. This article unfolds in four parts. In Part I, we will explore what we mean by collaborative communication. In Part II, we will examine key concepts that influence how we frame the situations that children with life-threatening conditions confront and how these frameworks shape the care we provide. In Part III, we will consider a few general topics that are quite important to the task of collaborative communication, specifically how we use little “habits of thought”– called heuristics – when we set about to solve complicated problems; how emotion affects the exchange of information between people; and how we can avoid certain pitfalls when engaging in difficult conversations. In Part IV, we will proceed through three common tasks of collaborative communication offering practical advice for patient care. PMID:17933613

  14. The Cross Cancer Institute Multidisciplinary Summer Studentship in Palliative and Supportive Care in Oncology: Teaching students to see through patients’ eyes

    Microsoft Academic Search

    Shilo Lefresne; Desiree Nielsen; Alysa Fairchild

    2011-01-01

    Purpose  In this paper, the psychosocial oncology-themed Cross Cancer Institute Multidisciplinary Summer Studentship in Palliative\\u000a and Supportive Care in Oncology is described from the perspective of the first participants and supervising faculty.\\u000a \\u000a \\u000a \\u000a \\u000a Methods  This 6-week inter-professional elective exposed pre-licensure students to issues facing patients and their families following\\u000a a diagnosis of cancer, through treatment, recovery, recurrence, palliation, and end-of-life.\\u000a \\u000a \\u000a \\u000a \\u000a Results  Participants gained experience

  15. Tell Us™: A Web-Based Tool for Improving Communication Among Patients, Families, and Providers in Hospice and Palliative Care Through Systematic Data Specification, Collection, and Use

    PubMed Central

    Dy, Sydney M.; Roy, Jayashree; Ott, Geoffrey E.; McHale, Michael; Kennedy, Christine; Kutner, Jean S.; Tien, Allen

    2015-01-01

    Context Routine electronic patient-reported outcome collection in patients with advanced disease could improve communication among patients, caregivers and providers and improve the timeliness of identifying problems and effectiveness of follow-up. Objective To develop a web-based tool to collect symptoms and need data and provide feedback to hospice and palliative care patients, caregivers and providers. Methods We developed Tell Us™ based on an existing pure web technology platform, the Medical Decision Logic, Inc. (“mdlogix”) Health Science Process Framework (HSPF™). The software development process included eliciting information on systems and needs and mapping care processes with three diverse hospices, and soliciting ideas for the software from clinicians and researchers. We developed a prototype software product, incorporated the hospices’ processes, assessment questions, and educational materials, and refined the product with feedback from other hospice and palliative care professionals. Results Tell Us includes modules for authoring and deploying clinical queries and completion schedules; for enrolling clinical sites and patients for patients and/or families to complete assigned assessments on a scheduled basis; and for providers to view patient-reported data. Tell Us provides customizable automated provider e-mail alerts based on patient responses (such as uncontrolled symptoms or need for medication refills) and provides educational materials targeted to patient needs. Conclusions This web-based toolset may be useful for improving communication between hospice and palliative care patients, caregivers, and providers and proactive patient management. Future research will involve integrating the software into care and evaluating its feasibility and use for data collection, patient education, and improving outcomes. PMID:21458214

  16. 75 FR 48235 - Rural Health Care Universal Service Support Mechanism

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-08-09

    ...47 CFR Part 54 Rural Health Care Universal Service Support Mechanism...02-60; FCC 10-125] Rural Health Care Universal Service Support Mechanism...improve the quality and delivery of health care, and addresses each of the...

  17. 45 CFR 98.50 - Child care services.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ...1 2014-10-01 2014-10-01 false Child care services. 98.50 Section 98.50...and Human Services GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50...

  18. 45 CFR 98.50 - Child care services.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ...1 2011-10-01 2011-10-01 false Child care services. 98.50 Section 98.50...AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50...

  19. 45 CFR 98.50 - Child care services.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ...1 2010-10-01 2010-10-01 false Child care services. 98.50 Section 98.50...AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50...

  20. 45 CFR 98.50 - Child care services.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ...1 2012-10-01 2012-10-01 false Child care services. 98.50 Section 98.50...AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50...

  1. 45 CFR 98.50 - Child care services.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ...1 2013-10-01 2013-10-01 false Child care services. 98.50 Section 98.50...AND HUMAN SERVICES GENERAL ADMINISTRATION CHILD CARE AND DEVELOPMENT FUND Use of Child Care and Development Funds § 98.50...

  2. On-going palliative care enhances perceived control and patient activation and reduces symptom distress in patients with symptomatic heart failure: A pilot study

    PubMed Central

    Evangelista, Lorraine S; Liao, Solomon; Motie, Marjan; De Michelis, Nathalie; Lombardo, Dawn

    2015-01-01

    Introduction There is a paucity of research about the impact of palliative care (PC) on perceived control (i.e. one’s perceived influence over outcomes or events in the environment) and activation (i.e. ability to self-manage) in patients with symptomatic heart failure (HF). Likewise, little is known about the association between perceived control, activation, and symptom distress in this patient population. We hypothesized that patients with advanced HF who received ongoing PC services (i.e. ?2 PC consultations) vs no access or a single PC consultation would have greater improvements in perceived control and activation and greater reductions in symptom distress three months post-discharge for HF exacerbation. Methods Forty-two patients (average age 53.9±8.0 years; predominantly male (72%), White (61%) and married (69%)) participated in the study. However, only 36 (85.7%) patients completed an outpatient PC consultation of which 29 (69%) patients returned for additional follow-up visits with the PC team. Data on perceived control, activation, and symptom distress were collected at baseline and three months. Parametric statistical models were applied to draw conclusions. Results Findings showed that the patients who received ?2 PC consultations had greater improvements in perceived control and activation than their counterparts; these increases were associated with greater reductions in symptom distress. Conclusion Our findings suggest that on-going PC interventions enhance perceived control and activation in patients with advanced HF and open up the possibility of planning larger studies to assess the effect of PC on these variables as possible mediators to improvements in self-management and clinical outcomes. PMID:24443421

  3. [Communication with palliative care patients: truth and hope--a contradiction?].

    PubMed

    Kronberger, Martina

    2010-07-01

    Especially in western countries an open communication with cancer patients has gained increasing importance in the last years. Balancing between truth and hope in view of bad prognosis presents a special challenge. Oncologists have the responsibility and duty of truthful disclosure. On the other hand they have to accept the patients handling with given information and to respect that sometimes patients do not want to know the whole truth. In this paper the difficulties to prevent hope and the importance of an individualized and empathic care will be discussed on the basis of a case report. PMID:20694759

  4. Researching a Best-Practice End-of-Life Care Model for Canada

    ERIC Educational Resources Information Center

    Wilson, Donna M.; Birch, Stephen; Sheps, Sam; Thomas, Roger; Justice, Christopher; MacLeod, Rod

    2008-01-01

    The vast majority of the 220,000 Canadians who die each year, principally of old age and progressive ill health, do not have access to specialized hospice or palliative care. Hospice and palliative care programs are unevenly distributed across Canada, with existing programs limited in capacity and services varying considerably across programs.…

  5. Nonpain Symptoms of New and Follow-up Cancer Patients Attending a Palliative Care Outpatient Clinic in Saudi Arabia

    PubMed Central

    Al-Shahri, Mohammad Zafir; Eldali, Abdelmoneim M; Al-Zahrani, Omar

    2012-01-01

    Background: Epidemiology of cancer-related nonpain symptoms receives less attention in literature as compared with cancer pain. Objective: This paper aims at exploring the prevalence and severity of nonpain symptoms in cancer patients attending a palliative care (PC) outpatient clinic. Materials and Methods: Over a 5 months period, consecutive adult cancer patients attending PC outpatient clinic at a tertiary hospital were evaluated for the presence and severity of 10 nonpain symptoms. Patients were grouped to new or follow-up cases and were also grouped according to performance status and cancer type. Prevalence and severity of symptoms were compared between groups using t test or analysis of variance as appropriate. Results: Fifty-one males and 73 females were interviewed. The most common cancer is female breast (27.4%) followed by head and neck (15.3%). Majority of patients (67%) were new to PC clinic. Patients had 5.1 nonpain symptoms on average, with most common symptoms being tiredness (79.8%), loss of appetite (71.8%), dry mouth (69.4%), anxiety (60.5%), and depression (50.8%). The least common symptoms were confusion and nausea (22.6% each). The median scores of severity were highest for tiredness, loss of appetite, dry mouth, and insomnia (5 points each). Symptoms were fewer among patients with good performance status (P = 0.002), whereas age, gender, cancer type, and encounter type were not associated with difference in symptom prevalence. Younger patients, females and those with poor performance status have shown a tendency toward higher severity scores for several symptoms. Conclusion: The significant prevalence and severity of nonpain symptoms among new and follow-up cancer patients seen in a PC outpatient clinic emphasizes the need for comprehensive assessment and routinely audited symptom management plans. PMID:23093824

  6. Prevalence and severity of pain in cancer patients in an outpatient palliative care setting in Saudi Arabia

    PubMed Central

    Al-Zahrani, Omar; Eldali, Abdelmoneim; Al-Shahri, Mohammad Zafir

    2014-01-01

    Background: The prevalence and severity of cancer pain in the outpatient palliative care (PC) setting have not been explored previously in Saudi Arabia (SA). Exploration of this basic information may help in evaluating pain severity in patients new to PC as compared to those with previous PC exposure. Objective: This paper aims to determine the prevalence and severity of cancer pain among new and follow-up patients attending a PC outpatient clinic. Methods: In a PC outpatient setting in a major tertiary hospital in SA, we interviewed adult patients with cancer during their attendance to the clinic. Patients were requested to score the severity of their pain on a 0 to 10 numerical scale. Results: A total of 124 patients were interviewed, of whom 73 (59%) were females. The majority of patients (82.3%) had metastatic disease. The most common cancers were breast (27.4%) and head and neck (15.3%). The majority of patients (85.5%) reported pain, with a median intensity score of 5 and a mean of 4.6. Of those who reported pain, 54 (51%) scored above 4. The mean pain score did not differ between groups of patients according to various characteristics such as age, sex, performance status, type of cancer or encounter type. Conclusion: Pain is a prevalent symptom in new and follow-up cancer patients seen in a PC outpatient setting in SA. Further research on a larger scale is needed to evaluate the magnitude of the problem more comprehensively with emphasis on detailed pain assessment and exploration of the adopted management approaches. PMID:25320691

  7. Contributions of advanced practice nurses with a DNP degree during palliative and end-of-life care of children with cancer.

    PubMed

    Hendricks-Ferguson, Verna L; Akard, Terrah Foster; Madden, Jennifer R; Peters-Herron, Alberta; Levy, Robyn

    2015-01-01

    The doctorate in nursing practice (DNP) degree is recommended as the terminal degree for advanced practice nurses by 2015. Improvement in the quality of palliative and end-of-life care for children with cancer is recognized as a health care priority. The purpose of this article is to describe: (a) how the American Association of Colleges of Nursing's 8 core elements and competencies can be used by DNP-advanced practice nurses in pediatric oncology settings and (b) the DNP-advanced practice nurses' leadership role to advocate translation of evidence in the care of pediatric oncology patients and to promote interdisciplinary collaboration to improve health care outcomes for pediatric oncology patients. PMID:25416517

  8. [Home care services and the role of "caregivers"].

    PubMed

    Massimo, L

    2001-06-01

    The care of children and adolescents with cancer continues to grow in complexity. While in most cases we are winning the fight, now quality of life (QoL) is becoming a problem to face and a challenge. Pediatric total care policy includes also home care to deliver in any stage of the disease. This can become very useful in the terminal stage, when QoL is the primary goal. The WHO has defined palliative care as integrating the psychologic and spiritual aspects of patient care; affirming life, and regarding dying as a normal process; neither hastening nor postponing death, offering a support system to help patients live as actively as possible until death; and offering a support system to help the family cope during the patient's illness and their own bereavement&. Recently this aim is considered also for children. The home care team is usually composed by a physician responsible, few physicians, several nurses, social workers, psychologists plus the family/home caregiver. In most countries health professionals now rely on family/home caregivers, who can play an important role in the team. The American College of Physicians has recently edited useful Guidelines. The Penn State Milton S. Hershey Medical Center suggests four key ideas which make the word COPE in order to succeed in solving problems: C for Creativity, O for Optimism, P for Planning, E for Expert information. Not everywhere in Europe home care is included as a part of the Health Care System, even if there are increasing pressures from shrinking budgets. As hospitals can be upsetting for the child, is hospital care always necessary during the long course of the disease? Home care, when feasible, can be an alternative approach. Strong motivations support pediatric home care. The life rhythms are better preserved if the whole family is at home. Parents must be taught how to cope and how to talk with their children, the sick one and his/her siblings. The dialogue is easier at home. Home care respects the needs of siblings. Adjustment to living is easier at home, taking into consideration the active help of relatives and close friends. Children need stability and honesty. Pain is a source of great distress for children. When possible pain control must be obtained or at least tried at home. The child may find a better comfort when in his own bedroom and, if he feels better, he can play at home. When the child is dying the treatment is focused for a good QoL and no more on cure: children can feel the change. The difference is impressive if the child is followed at home and not only in hospital. Volunteer Groups can help the child's family better at home then in hospital. Also in Italy Scientific Pediatric Societies, health care professionals together with Parents' Associations could push politicians and implement the integration of several types of services for treatment of children, including home care, offering their collaboration in the global therapy design. PMID:11455302

  9. MASTER THESIS HEALTH SCIENCES ORGANIZATION OF PEDIATRIC PALLIATIVE

    E-print Network

    Vellekoop, Michel

    MASTER THESIS HEALTH SCIENCES ORGANIZATION OF PEDIATRIC PALLIATIVE CARE IN ONCOLOGY: PREFERENCES-mail: l.a.straathof@student.utwente.nl Title: Organization of pediatric palliative care in oncology: J.G. VAN MANEN 2ND SUPERVISOR: S. SIESLING EXTERNAL SUPERVISOR: M. POTTERS #12;Pediatric palliative

  10. Observational study on patient's satisfactions and quality of life (QoL) among cancer patients receiving treatment with palliative care intent in a tertiary hospital in Malaysia.

    PubMed

    Sharifa Ezat, Wan Puteh; Fuad, Ismail; Hayati, Yaakub; Zafar, Ahmed; Wanda Kiyah, George Albert

    2014-01-01

    The main objective of palliative treatment for cancer patients has been to maintain, if not improve, the quality of life (QoL). There is a lack of local data on satisfaction and QoL among cancer patients receiving palliative treatment in Malaysia. This study covers patients with incurable, progressive cancer disease receiving palliative treatment in a teaching hospital in Kuala Lumpur, comparing the different components of QoL and correlations with patient satisfaction. A cross-sectional survey using Malay validated SF36 QoL and PSQ-18 (Short Form) tools was carried out between July 2012 -January 2013 with 120 cancer patients receiving palliative treatment, recruited into the study after informed consent using convenient sampling. Results showed that highest satisfaction were observed in Communication Aspect (50.6±9.07) and the least in General Satisfaction (26.4±5.90). The Mental Component Summary (44.9±6.84) scored higher when compared with the Physical Component Summary (42.2±7.91). In this study, we found that patient satisfaction was strongly associated with good quality of life among cancer patients from a general satisfaction aspect (r=0.232). A poor significant negative correlation was found in Physical Component (technical quality, r=-0.312). The Mental Component showed there was a poor negative correlation between time spent with doctor (r=-0.192) and accessibility, (r=-0.279). We found that feeling at peace and having a sense of meaning in life were more important to patients than being active or achieving good physical comfort. More studyis needed to investigate patients who score poorly on physical and mental component aspects to understand their needs in order to achieve better cancer care. PMID:24568481

  11. Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations

    PubMed Central

    2014-01-01

    Background Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group. Methods Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis. Results Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources. Conclusion Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations. PMID:24959101

  12. [The perspectives on palliative nursing education].

    PubMed

    Hu, Wen-Yu; Yeh, Mei Chang

    2015-04-01

    The numbers of people who suffer from age-related and chronic diseases have been increased worldwide. This has lead to an increased emphasis in the medical community on end of life care. This paper references the processes followed overseas in developing palliative care education programs as well as the domestic experiences promoting the hospitalization, home care, and "share care" models of palliative care. Particular emphasis is given to considerations of cultural diversity in palliative care. The aim of this paper is to elaborate on the prevalent clinical end-of-life care issues that are faced in Taiwan, to cultivate core capabilities in end-of-life care, to elicit the current status and development of formal nursing education, and to promote continuing education in palliative care. Kern formulated a six-step approach to curriculum development in education and the details has been discussed . Finally, this paper reflects on the current bottlenecks, challenges, and expectations related to palliative care curriculum development in order to help medical professionals further put humanistic and social care into practice, increase ethical reflection in end of life care and nursing competency, and encourage the creation of localized textbooks / multimedia e-teaching materials. The fostering of "patient-centered, family unit and the social-cultural contexture" for palliative care professionals and the ability to respond to the needs of terminal patients and patients with chronic diseases are critical to increasing the quality of Taiwan healthcare. PMID:25854945

  13. 75 FR 4632 - Voluntary Service National Advisory Committee; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-01-28

    ...Voluntary Service Report, Veterans Health Administration Update, and remarks by VA officials on suicide prevention, palliative care, medical home and social work service. Educational workshops will be held in the afternoon and focus on...

  14. Managed Care for Children: Effect on Access to Care and Utilization of Health Services.

    ERIC Educational Resources Information Center

    Szilagyi, Peter G.

    1998-01-01

    Reviews what is known about the effect of managed care on access to health services, as well as utilization of hospital care, emergency department visits, primary care services, and specialty pediatric services. The effect of managed care appears dependent on several factors and, thus, is likely to vary according to the population served. (SLD)

  15. Exploring the Experiences of People with Intellectual Disabilities when Service Users Die

    ERIC Educational Resources Information Center

    Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John

    2011-01-01

    Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population's palliative care needs. We report on findings…

  16. 38 CFR 21.240 - Medical treatment, care and services.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 2010-07-01 false Medical treatment, care and services...VOCATIONAL REHABILITATION AND EDUCATION Vocational Rehabilitation...38 U.S.C. Chapter 31 Medical and Related Services § 21.240 Medical treatment, care and...

  17. 38 CFR 21.6240 - Medical treatment, care and services.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 2010-07-01 false Medical treatment, care and services...VOCATIONAL REHABILITATION AND EDUCATION Temporary Program of Vocational...Certain New Pension Recipients Medical and Related Services § 21.6240 Medical treatment, care and...

  18. What is palliative care?

    MedlinePLUS

    ... Treatments may include: Medicine Nutritional guidance Physical therapy Occupational therapy Integrative therapies Emotional, social, and coping problems. Patients and their families face stress during illness that can lead to fear, anxiety, ...

  19. Treatment Approaches (Palliative Care)

    MedlinePLUS

    ... such as anxiety and depression, treatment includes supportive psychotherapy and the use of antidepressant or anti-anxiety drugs. Psychotherapy may include relaxation training, imagery, distraction, coping training, ...

  20. 78 FR 70863 - Copayment for Extended Care Services

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-11-27

    ...copayment obligation for extended care services longer than 180 days. We proposed to define the...Veterans Home Based Primary Care; and 64.024, VA Homeless...abuse, Alcoholism, Claims, Day care, Dental health, Drug...