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Sample records for palliative care services

  1. Palliative Care

    MedlinePLUS

    ... Emergency Cerebral Palsy: Caring for Your Child Palliative Care KidsHealth > For Parents > Palliative Care Print A A ... decisions about their child's care. Who Needs Palliative Care? Any child who has a serious, complex, or ...

  2. Palliative Care

    MedlinePLUS

    ... for Your Child All About Food Allergies Palliative Care KidsHealth > For Parents > Palliative Care Print A A ... decisions about their child's care. Who Needs Palliative Care? Any child who has a serious, complex, or ...

  3. [eLearning service for home palliative care].

    PubMed

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

    2008-12-01

    In order to support the home palliative care learning, we made the eLearning service for home palliative care (beta version) and tried to teach the palliative care to the medical staffs in the community. The various learners (such as nurses, pharmacists and the like) accessed to the online learning and used this eLearning service. After the learners finished eLearning for home palliative care, some questionnaires were distributed to the learners and analyzed by us. The analysis of questionnaires revealed that almost all were satisfied with our eLearning services. Especially the learners were not only interested in using the skills of opioids and the management of pain control, but they had a good cognition for the usage of opioids. PMID:20443298

  4. Center to Advance Palliative Care palliative care consultation service metrics: consensus recommendations.

    PubMed

    Weissman, David E; Meier, Diane E; Spragens, Lynn Hill

    2008-12-01

    The need to standardize the prospective collection and analysis of data has been a cornerstone of education and technical assistance provided by the Center to Advance Palliative Care (CAPC). Data analysis is vital for strategic planning, quality improvement, and demonstration of program impact to hospital administrators, private funders, and policymakers. To develop a set of core measures, CAPC convened a consensus panel in 2008 to focus on the topic of operational metrics for consultation services. Operational metrics, as distinct from clinical, customer and financial metrics, describe the characteristics of patients seen on the consultation service, such as age, disease, location, referring service and disposition. The panel arrived at 12 metric domains, all but one of which can be used for either internal programmatic use or for external comparisons of service characteristics/impact between different hospitals. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care consultation teams are encouraged to collect and report outcomes for each of the twelve metric domains described here. PMID:19115885

  5. 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

  6. Palliative Care

    MedlinePLUS

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

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

    PubMed Central

    Meier, Diane E

    2011-01-01

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

  8. Center to Advance Palliative Care

    MedlinePLUS

    ... Care Registry™. The Registry collects operational data on hospital palliative care programs to promote standardization and improve the ... posts positions for palliative care professionals as a service to the field. Browse the listings , and please ...

  9. Developing Successful Models of Cancer Palliative Care Services

    PubMed Central

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

    2010-01-01

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

  10. Palliative care afterhours: a review of a phone support service.

    PubMed

    Bradford, Natalie; Irving, Helen; Smith, Anthony C; Pedersen, Lee-Anne; Herbert, Anthony

    2012-01-01

    Families caring for a child with incurable cancer require access to support and advice round the clock. In Brisbane, Australia, an after-hours phone service was established to support these families. This service is operated by oncology clinical nurse consultants (CNCs) experienced in pediatric palliative care. This is the first review of 8 years of activity, totaling 106 patients and 1954 calls. The majority of calls were between parents and CNCs (51%). Updating of the patient's condition (18%) was the primary reason for calls, with support and reassurance (16%), and symptom management of pain (10%) being the other frequent reasons. The majority of calls occurred over the weekends in the morning, with only 11% (n = 209) of calls occurring between 10:00 pm and 7:00 am. Of all the calls made, 43% (n = 814) were calls managed by the CNC without requiring further intervention. Calls were received from throughout Queensland, indicating the value of the service in supporting families throughout the state. The after-hours phone service has proven to be a simple, effective, and valuable service, which is consistently accessed by families, regardless of distance from the hospital. PMID:22647726

  11. Interaction of palliative care and primary care.

    PubMed

    Ghosh, Amrita; Dzeng, Elizabeth; Cheng, M Jennifer

    2015-05-01

    Primary care physicians are often the first medical providers patients seek out, and are in an excellent position to provide primary palliative care. Primary palliative care encompasses basic skills including basic evaluation and management of symptoms and discussions about goals of care and advance care planning. Specialty palliative care consultation complements primary care by assisting with complex psychosocial-spiritual patient and family situations. This article reviews primary palliative care skill sets and criteria for when to consider referring patients to specialty palliative care and hospice services. PMID:25920056

  12. Palliative Care: Cure Versus Palliation

    PubMed Central

    Nixon, Alan J.

    1986-01-01

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

  13. 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

  14. Understanding palliative nursing care.

    PubMed

    Geoghan, Darlene A

    2008-01-01

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

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

    PubMed

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

    2014-02-01

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

  16. Innovative palliative care in Edmonton.

    PubMed Central

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

    1997-01-01

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

  17. Doctors' understanding of palliative care.

    PubMed

    Hanratty, Barbara; Hibbert, Derek; Mair, Frances; May, Carl; Ward, Chris; Corcoran, Ged; Capewell, Simon; Litva, Andrea

    2006-07-01

    Palliative care has been challenged to share its message with a wider audience, and for many years it has been articulating an approach that is suitable for all patients. However, it is not clear how widely this message has been accepted. As part of a study into end-of-life care for heart failure, we conducted seven focus groups with doctors in general practice, palliative medicine, cardiology, geriatrics and general medicine. In these, we explored doctors' understanding of palliative care. Participants displayed a reasonable grasp of the wider concept of palliative care, but the specialists' role was ill-defined, reflected in scepticism about their place outside of cancer. Perceptions of palliative care fell into three broad areas: it was more than a service, about managing dying, and the concern of nurses, rather than doctors. Palliative care was welcomed as providing permission to fail, whilst representing a dilemma between quantity and quality of life for the interviewees. Our work suggests that specialist palliative care has been partially successful in getting their message across, and poor understanding or receptivity are not major barriers to implementing palliative care. Educational or other interventions to implement change in palliative care need to acknowledge the complex interaction of factors influencing physicians' behaviour. PMID:16903402

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

    PubMed

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

    2011-04-01

    Cancer is the second most common cause of death in children and young people (0-19 years) accounting for 16.2% of deaths in England and Wales in 2005. Only 37.6% children and young people who died from cancer in Yorkshire were referred to Martin House Children's Hospice (MH) during the period 1990-2005. A significantly higher proportion with central nervous system tumours and a significantly lower than expected proportion with leukaemia or lymphoma were referred for palliative care. There is potential to increase the proportion of children and young people with cancer who are referred to specialist palliative care services. PMID:21298761

  19. Palliative Care

    MedlinePLUS

    ... last modified: November 19th, 2014 by Geoff Duncan Coping With Cancer CureSearch CancerCare App CancerCare App Video ... Hospitals We Support Scientific Advisory Council Young Investigators Coping with Cancer Child Life Specialist Webinars Community Support ...

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

    PubMed

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

    2015-12-01

    Palliative care and rehabilitation practitioners are important collaborative referral sources for each other who can work together to improve the lives of cancer patients, survivors, and caregivers by improving both quality of care and quality of life. Cancer rehabilitation and palliative care involve the delivery of important but underutilized medical services to oncology patients by interdisciplinary teams. These subspecialties are similar in many respects, including their focus on improving cancer-related symptoms or cancer treatment-related side effects, improving health-related quality of life, lessening caregiver burden, and valuing patient-centered care and shared decision-making. They also aim to improve healthcare efficiencies and minimize costs by means such as reducing hospital lengths of stay and unanticipated readmissions. Although their goals are often aligned, different specialized skills and approaches are used in the delivery of care. For example, while each specialty prioritizes goal-concordant care through identification of patient and family preferences and values, palliative care teams typically focus extensively on using patient and family communication to determine their goals of care, while also tending to comfort issues such as symptom management and spiritual concerns. Rehabilitation clinicians may tend to focus more specifically on functional issues such as identifying and treating deficits in physical, psychological, or cognitive impairments and any resulting disability and negative impact on quality of life. Additionally, although palliative care and rehabilitation practitioners are trained to diagnose and treat medically complex patients, rehabilitation clinicians also treat many patients with a single impairment and a low symptom burden. In these cases, the goal is often cure of the underlying neurologic or musculoskeletal condition. This report defines and describes cancer rehabilitation and palliative care, delineates their respective roles in comprehensive oncology care, and highlights how these services can contribute complementary components of essential quality care. An understanding of how cancer rehabilitation and palliative care are aligned in goal setting, but distinct in approach may help facilitate earlier integration of both into the oncology care continuum-supporting efforts to improve physical, psychological, cognitive, functional, and quality of life outcomes in patients and survivors. PMID:26314705

  1. Education in palliative care.

    PubMed

    Weissman, David E; Blust, Linda

    2005-02-01

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

  2. Palliative care - managing pain

    MedlinePLUS

    End of life - pain management; Hospice - pain management ... Bookbinder M, McHugh ME. Symptom management in palliative care and end of life care. Nurs Clin North Am . 2010;45:271-327. Mercadente S. Challenging pain problems. In: ...

  3. 78 FR 35942 - Proposed Collection; Comment Request: Palliative Care: Conversations Matter Evaluation

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-14

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

  4. Spirituality and Palliative Care

    PubMed Central

    Broeckaert, Bert

    2011-01-01

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

  5. Palliative Care in Cancer

    MedlinePLUS

    ... including nausea and vomiting, fatigue, peripheral neuropathy, pain, and sleep problems. For more information, go to http://prevention.cancer.gov/major-programs/supportive-and-palliative-care/grants/ . NCI’s Office of Cancer Survivorship ...

  6. [Palliative care in neurology].

    PubMed

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

    2015-07-01

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

  7. Palliative care in pediatrics.

    PubMed

    Himelstein, Bruce P

    2005-12-01

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

  8. Characteristics of a palliative care consultation service with a focus on pain in a German university hospital

    PubMed Central

    2014-01-01

    Background A minority of patients with incurable and advanced disease receive specialised palliative care. Specialised palliative care services that complement the care of difficult and complex cases ought to be integrated with services that deliver general care for most patients. A typical setting in which this integrative concept takes place is the hospital setting, where patients suffering from incurable and advanced disease are treated in many different departments. The aim of the study is to investigate the profile and spectrum of a palliative care consultation service (PCCS) at a German university hospital with special reference to pain therapy. Methods We retrospectively analysed the PCCS documentation of three years. Results Most patients were referred from non-surgical departments, 72% were inpatients, and 28% were outpatients. 98% of the patients suffered from cancer. Counselling in pain therapy was one of the key aspects of the consultation: For 76% of all consulted patients, modifications of the analgesic regimen were recommended, which involved opioids in 96%. Recommendations on breakthrough-pain medication were made for 70% of the patients; this was an opioid in most cases (68%). The most commonly used opioid was morphine. For 17% of the patients, additional diagnostic procedures were recommended. Besides pain management palliative care consultation implied a wide range of recommendations and services: In addition to organising home care infrastructure, palliative care services supported patients and their families in understanding the life-limiting diseases. They also coordinated physical therapy and social and legal advice. Conclusion This survey clearly shows that for a consultation service to support patients with incurable or advanced disease, a multi-disciplinary approach is necessary to meet the complex requirements of a needs-adapted palliative care in inpatient or outpatient settings. Timely integration of palliative expertise may support symptom control and may give the required advice to patients, their carers, and their families. PMID:25276095

  9. Perspectives in palliative care?

    PubMed

    Tueni, Elias

    2008-01-01

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

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

    PubMed

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

    2013-08-01

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

  11. 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

  12. 78 FR 53152 - Submission for OMB Review; Comment Request: Palliative Care: Conversations Matter Evaluation

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-08-28

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

  13. [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

  14. Palliative Care in Critical Rural Settings.

    PubMed

    Mayer, Dorothy Dale M; Winters, Charlene A

    2016-02-01

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

  15. Grief and Palliative Care: Mutuality

    PubMed Central

    Moon, Paul J

    2013-01-01

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

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

    MedlinePLUS

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

  17. Palliative care and pulmonary rehabilitation.

    PubMed

    Janssen, Daisy J A; McCormick, James R

    2014-06-01

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

  18. Integrating Early Palliative Care for Patients With HIV: Provider and Patient Perceptions of Symptoms and Need for Services.

    PubMed

    Lofgren, Sarah; Friedman, Rachel; Ghermay, Rahwa; George, Maura; Pittman, John Richard; Shahane, Amit; Zeimer, Dorothy; Del Rio, Carlos; Marconi, Vincent C

    2015-12-01

    Increasingly clinicians are using palliative care to address the symptomatic and psychosocial effects of disease often missed by routine clinical care, termed "early" palliative care. Within an inner-city medical center, we began a program to integrate early palliative care into HIV inpatient care. Patient symptom burden and desired services were assessed and compared to provider perceptions of patient's needs. From 2010-2012, 10 patients, with a median CD4+ T-cell count of 32.5 cells/?L, and 34 providers completed the survey. Providers ranked their patients' fatigue, sadness, anxiety, sexual dysfunction, and body image significantly higher than patients it for themselves. Patients ranked medical care, pharmacy, social work, physical therapy, and housing as significantly more important to them than providers estimated them to be. These differences may reflect the fact that physicians often overlook patients' unmet basic needs. Early palliative care may narrow this gap between providers' and patients' perceptions of needs through good communication and targeting barriers, such as housing instability, which are vital to overcome for consistent long-term follow up. PMID:25216735

  19. Palliative Care in Advanced Lung Disease: The Challenge of Integrating Palliation Into Everyday Care.

    PubMed

    Rocker, Graeme M; Simpson, A Catherine; Horton, Robert

    2015-09-01

    The tendency toward "either/or" thinking (either cure or comfort) in traditional biomedical care paradigms does little to optimize care in advancing chronic illness. Calls for improved palliation in chronic lung disease mandate a review of related care gaps and current clinical practices. Although specialist palliative services have their advocates, adding yet another element to an already fragmented, often complex, care paradigm can be a challenge. Instead, we propose a more holistic, patient-centered approach based on elements fundamental to palliative and best care practices generally and integrated as needed across the entire illness trajectory. To support this approach, we review the concept of primary palliative care competencies, identify vulnerability specific to those living with advanced COPD (an exemplar of chronic lung disease), and describe the need for care plans shaped by patient-centered communication, timely palliative responsiveness, and effective advance care planning. A costly systemic issue in the management of chronic lung disease is patients' increasing dependency on episodic ED care to deal with preventable episodic crises and refractory dyspnea. We address this issue as part of a proposed model of care that provides proactive, collaborative case management and the appropriate and carefully monitored use of opioids. We encourage and support a renewed primary care resolve to integrate palliative approaches to care in advanced lung disease that, in concert with judicious referral to appropriate specialist palliative care services, is fundamental to what should be a more sustainable systematic improvement in palliative care delivery. PMID:25742140

  20. Palliative care in cardiopulmonary transplantation.

    PubMed

    McKenna, Maria; Clark, Stephen C

    2015-12-01

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

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

    PubMed Central

    Escutia Gutirrez, Raymundo; Cortz lvarez, Csar R.; lvarez lvarez, Rosa M.; Flores Hernndez, Jorge LV.; Gutirrez Godnez, Jssica; Lpez Y Lpez, Jos G.

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

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

    PubMed Central

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

    2015-01-01

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

  3. Modern palliative care: an exercise in prevention and partnership.

    PubMed

    MacDonald, Neil

    2005-02-01

    Palliative care is no longer solely an excercise in controlling suffering at the end of life. If we are to apply the principles of palliative care throughout the course of illness, both the culture and the organization of palliative care services must change. New partners must be enlisted in more sophisticated, increasingly academic partnerships. This change, while welcome and necessary, must come about with perservation of the core values of palliative care. PMID:15807059

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

    PubMed Central

    2013-01-01

    Background This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind. Methods Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams. Results Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale to better illustrate how actors and organizations could move forward. Conclusions This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared care model, while simultaneously providing direction for team-based program delivery and sustainability for other jurisdictions. PMID:23984638

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

    PubMed Central

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

    2013-01-01

    Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. Authors' conclusions The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies. PLAIN LANGUAGE SUMMARY Effectiveness and cost-effectiveness of home-based palliative care services for adults with advanced illness and their caregivers When faced with the prospect of dying with an advanced illness, the majority of people prefer to die at home, yet in many countries around the world they are most likely to die in hospital. We reviewed all known studies that evaluated home palliative care services, i.e. experienced home care teams of health professionals specialised in the control of a wide range of problems associated with advanced illness – physical, psychological, social, spiritual. We wanted to see how much of a difference these services make to people's chances of dying at home, but also to other important aspects for patients towards the end of life, such as symptoms (e.g. pain) and family distress. We also compared the impact on the costs with care. On the basis of 23 studies including 37,561 patients and 4042 family caregivers, we found that when someone with an advanced illness gets home palliative care, their chances of dying at home more than double. Home palliative care services also help reduce the symptom burden people may experience as a result of advanced illness, without increasing grief for family caregivers after the patient dies. In these circumstances, patients who wish to die at home should be offered home palliative care. There is still scope to improve home palliative care services and increase the benefits for patients and families without raising costs. PMID:23744578

  6. [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

  7. Hypnotherapy in palliative care.

    PubMed Central

    Finlay, I G; Jones, O L

    1996-01-01

    Complementary therapies have found increasing vogue in the management of patients with cancer, although little formal evaluation has been undertaken. We report on our experience of offering hynotherapy to palliative care outpatients in a hospice day care setting. During 2 1/2 years, 256 patients had hypnotherapy, all singly; two-thirds (n = 104) were women. Only 13% (n = 21) had four or more treatment sessions. At the time of survey, the 52 patients still alive were mailed an evaluation sheet, of whom 41 responded. 61% reported improved coping with their illness. 7% (n = 3) reported harmful or negative effects from hypnotherapy. Amongst those whose coping was unchanged, many found the therapy a pleasant experience. 35 respondents (85%) appended positive comments to their questionnaire returns. Despite the limitations of a retrospective questionnaire, our findings suggest that hypnotherapy, used within strict guidelines in patients with advanced cancer, is a safe complementary therapy to enhance coping. PMID:8949516

  8. [Quality management in palliative care].

    PubMed

    Cottier, Christoph

    2012-02-01

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

  9. Palliative Care and Prehospital Emergency Medicine

    PubMed Central

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

    2014-01-01

    Abstract Palliative care, which is intended to keep patients at home as long as possible, is increasingly proposed for patients who live at home, with their family, or in retirement homes. Although their condition is expected to have a lethal evolution, the patientsor more often their families or entouragesare sometimes confronted with sudden situations of respiratory distress, convulsions, hemorrhage, coma, anxiety, or pain. Prehospital emergency services are therefore often confronted with palliative care situations, situations in which medical teams are not skilled and therefore frequently feel awkward. We conducted a retrospective study about cases of palliative care situations that were managed by prehospital emergency physicians (EPs) over a period of 8 months in 2012, in the urban region of Lausanne in the State of Vaud, Switzerland. The prehospital EPs managed 1586 prehospital emergencies during the study period. We report 4 situations of respiratory distress or neurological disorders in advanced cancer patients, highlighting end-of-life and palliative care situations that may be encountered by prehospital emergency services. The similarity of the cases, the reasons leading to the involvement of prehospital EPs, and the ethical dilemma illustrated by these situations are discussed. These situations highlight the need for more formal education in palliative care for EPs and prehospital emergency teams, and the need to fully communicate the planning and implementation of palliative care with patients and patients family members. PMID:25437023

  10. Team Networking in Palliative Care

    PubMed Central

    Spruyt, Odette

    2011-01-01

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

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

    PubMed

    Rassouli, Maryam; Sajjadi, Moosa

    2016-04-01

    Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. PMID:25492970

  12. Palliative care situation in Palestinian Authority.

    PubMed

    Shawawra, Mousa; Khleif, Amal Dweib

    2011-04-01

    Palliative care is a very new concept in Palestine. In fact, it is still not applicable or provided within the Palestinian health care system. However, Al-Sadeel Society had organized a one day workshop in Bethlehem on November 2008 for the health professionals from the governmental and non-governmental sectors to initiate and introduce the idea of palliative care for the first time in Palestine. The general population of Palestine is approximately 2.4 millions (2007), with a life expectancy of 74.3 years of age, the death rate is 3.7 per 1000 population, having 8,910 deaths a year. Deaths due to cancer were 2,305 in five years (1999-2003), where 5,542 new cases were newly diagnosed in the same period. Health services available for cancer patients are hospital units either in patient or day care units. According to the ministry of health (MOH) statistics there are 75 beds in oncology departments in MOH hospitals; represent 2.7% of the total number of beds available, and 60 beds in daily care departments with an occupancy rate at 231.8%. There is no hospice or bereavement follow up care available for patients or their families. Despite the fact that the Palestinian culture is one of the cultures that respect and care for the elderly, but at the end of life, when the load of symptoms is high, most of the patient are care for at hospitals, and usually dye there, because the families are not able to care for their patients, and as there is no system for home care available for the Palestinian patients, and if it is available it is available in limited places and on private bases that are expensive and not affordable to the majority of patients, gross domestic product (GPD) per capita= 1,100 as 2007 estimates). We conducted a needs assessment survey within the only four facilities that provide care for the oncology patients in the West Bank and were filled by the direct health care providers. The results were expressing the fact that there is no palliative care service available for cancer patients or their families, absence of organizations strategic planning for palliative care, No presence of educational resources for palliative care, No presence of communication or consultation to the clergy man, Absence of bereavement support group, no active follow up for the patient and the family, no standards for palliative care service or training programs in palliative care, no home care service for palliative care, absence of community awareness for palliative care And Absence of national standard for palliative care. The recommendations that we can conclude, depending on the needs assessment that we did, and according to the recommendations that come up through the workshop that was organized by Al-Sadeel Society and was attended by key personnel from the Palestinian MOH who summarized the conclusion, are as follows: 1.?The need for better quality care for the cancer patient.2.?The need for training of health professionals in palliative care.3.?The importance of networking and cooperation between the national NGO's and the MOH.4.?The need for public awareness regarding the early detection for cancer especially breast cancer.5.?The need for national policy and standards for palliative care and opioids legislations.6.?The importance of base line data and research. 7.?The need for interdisciplinary team work in the issue of cancer. 8.?To involve palliative care education within the curriculum of schools of health professions. PMID:21448041

  13. 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

  14. 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)

  15. Palliative Care Version 1.2016.

    PubMed

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

    2016-01-01

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

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

    PubMed

    Gordijn, B; Visser, A

    2000-08-01

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

  17. The growth of palliative care.

    PubMed

    Strand, Jacob J; Mansel, J Keith; Swetz, Keith M

    2014-06-01

    Palliative care specialists focus on meeting the needs of patients with serious and/or life-threatening illnesses. These physicians have expertise in managing complex pain and nonpain symptoms, providing psychosocial and spiritual support to patients and their families, and communicating about complex topics and advance care planning. The American Board of Medical Specialties has allowed 10 of its member boards to co-sponsor certification in Hospice and Palliative Medicine. Thus, physicians from specialties ranging from pediatrics to surgery now practice hospice and palliative medicine. At the core of this field, however, are physicians who trained as internists and are boarded by the American Board of Internal Medicine. This article discusses the central principles of palliative care and explores its growth in two areas: oncology and critical care medicine. PMID:25029799

  18. Integrating palliative care into national policies.

    PubMed

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

    2007-05-01

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

  19. Rawlsian Justice and Palliative Care.

    PubMed

    Knight, Carl; Albertsen, Andreas

    2015-10-01

    Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare. We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive. PMID:25689627

  20. 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

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

    PubMed

    Webster, Ruth; Lacey, Judith; Quine, Susan

    2007-01-01

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

  2. Evaluation of Hospital-Based Palliative Care Programs.

    PubMed

    Hall, Karen Lynn; Rafalson, Lisa; Mariano, Kathleen; Michalek, Arthur

    2016-02-01

    This study evaluated current hospital-based palliative care programs using recommendations from the Center to Advance Palliative Care (CAPC) as a framework. Seven hospitals located in Buffalo, New York were included based on the existence of a hospital-based palliative care program. Data was collected from August through October of 2013 by means of key informant interviews with nine staff members from these hospitals using a guide comprised of questions based on CAPC's recommendations. A gap analysis was conducted to analyze the current state of each hospital's program based upon CAPC's definition of a quality palliative care program. The findings identify challenges facing both existing/evolving palliative care programs, and establish a foundation for strategies to attain best practices not yet implemented. This study affirms the growing availability of palliative care services among these selected hospitals along with opportunities to improve the scope of services in line with national recommendations. PMID:25294226

  3. Palliative care in the Pueblo of Zuni.

    PubMed

    Finke, Bruce; Bowannie, Theresa; Kitzes, Judith

    2004-02-01

    The American Indian and Alaska Native population is aging and the leading causes of death for those aged 55 and older are chronic diseases such as cancer, heart disease, and the complications of diabetes. There are limited formal palliative care services available to rural and reservation dwelling American Indians and Alaska Natives. This collaboration between a tribally operated home health care agency and a federally operated Indian Health Service hospital, with the support of a palliative care center within an academic medical center, has established a palliative care program in the Pueblo of Zuni. The program is based in the tribal home health agency. Barriers to development included the rural setting with limited professional workforce, competing demands in a small agency, the need for coordination across distinct organizations, and the need to address the dying process in a culturally proficient manner. Family-focused interviews and other techniques were used to tailor the palliative care program to the unique cultural setting. The program has sought to integrate inpatient care of terminally ill patients at the Indian Health Service (IHS) hospital with outpatient hospice care. The initial goal of obtaining certification as a Medicare Hospice provider has not been met and remains a goal. Meanwhile alternative mechanisms for funding the services have been found. The experience of this collaboration suggests that a tribally based, culturally proficient palliative care program can be developed within an American Indian/Alaska Native community and that it can drive the local health system toward improved end-of-life care. PMID:15000797

  4. The quality imperative for palliative care.

    PubMed

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

    2015-02-01

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

  5. The Quality Imperative for Palliative Care

    PubMed Central

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

    2015-01-01

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

  6. Mapping levels of palliative care development: a global view.

    PubMed

    Wright, Michael; Wood, Justin; Lynch, Thomas; Clark, David

    2008-05-01

    Palliative care is coming to be regarded as a human right. Yet globally, palliative care development appears patchy and comparative data about the distribution of services are generally unavailable. Our purpose is to categorize hospice-palliative care development, country by country, throughout the world, and then depict this development in a series of world and regional maps. We adopt a multimethod approach, which involves the synthesis of evidence from published and grey literature, regional experts, and a task force of the European Association of Palliative Care. Development is categorized using a four-part typology constructed during a previous review of palliative care in Africa. The four categories are (1) no identified hospice-palliative care activity, (2) capacity building activity but no service, (3) localized palliative care provision, and (4) countries where palliative care activities are approaching integration with mainstream service providers. We found palliative care services in 115/234 countries. Total countries in each category are as follows: (1) no identified activity 78 (33%), (2) capacity building 41 (18%), (3) localized provision 80 (34%), and (4) approaching integration 35 (15%). The ratio of services to population among Group 4 countries ranges from 1:43,000 (in the UK) to 1:4.28 million (in Kenya); among Group 3 countries it ranges from 1:14,000 (in Gibraltar) to 1:158 million (in Pakistan). The typology differentiates levels of palliative care development across the four hemispheres and in rich and poor settings. Although half of the world's countries have a palliative care service, far more are needed before such services are generally accessible worldwide. PMID:18243637

  7. Pediatric Palliative Care at a Glance

    MedlinePLUS

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

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

    PubMed

    Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu

    2014-12-01

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

  9. Mapping the literature: palliative care within adult and child neurology.

    PubMed

    Dallara, Alexis; Meret, Anca; Saroyan, John

    2014-12-01

    Objectives of this review were to examine definitions and background of palliative care, as well as address whether there is an increased need for palliative care education among neurologists. The review also explores what literature exists regarding palliative care within general neurology and child neurology. A literature review was conducted examining use of palliative care within child neurology. More than 100 articles and textbooks were retrieved and reviewed. Expert guidelines stress the importance of expertise in palliative care among neurologists. Subspecialties written about in child neurology include that of peripheral nervous system disorders, neurodegenerative diseases, and metabolic disorders. Adult and child neurology patients have a great need for improved palliative care services, as they frequently develop cumulative physical and cognitive disabilities over time and cope with decreasing quality of life before reaching the terminal stage of their illness. PMID:24717986

  10. Pediatric Palliative Care: A Personal Story

    MedlinePLUS Videos and Cool Tools

    ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 203 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  11. The developing role of children's nurses in community palliative care.

    PubMed

    O Brien, Irene; Duffy, Anita

    This article addresses some of the contemporary issues in relation to providing palliative care for children in Ireland, particularly focusing on the creation of the specialist palliative care nursing outreach posts. The recent publication of an Irish national policy on palliative care for children with life-limiting illness is welcome news for paediatric nurses in Ireland. Children are valued members of society and have a right to receive quality health care and support appropriate to meet both children and the families' precise needs. However, community services for children with life-limiting illnesses remain inadequate, with many parents and families struggling to provide palliative care for children in the home. Currently, community nurses, who are not always registered children's nurses, are providing palliative care for children at the end of life. These nurses may not fully understand the specific needs of critically or chronically ill children and their families. In addition, there are no specific palliative care educational programmes in Ireland with regard to end-of-life care for children. The challenges of providing palliative care to children and their families in relation to symptom control, controversial ethical and legal issues, and emotional and practical support, mean that advanced knowledge is required in order to progress the agenda and thus provide excellence in children's palliative care in Ireland. It is important that the agenda is moved forward so that children and their families requiring palliative care and nursing support do not suffer from a lack of professional provision for their needs. PMID:20966865

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

    PubMed

    Basu, Arnab; Mittag-Leffler, Barbro Norrstrm; 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

  13. The Canadian Palliative Care Undergraduate Curriculum.

    PubMed

    MacDonald, N; Mount, B; Boston, W; Scott, J F

    1993-01-01

    In 1988 the deans of 12 (out of 16) Canadian medical schools appointed representatives to a Canadian Palliative Care Curriculum Committee. The Committee has subsequently published the Canadian Palliative Care Curriculum which outlines specific goals and objectives for palliative care instruction in undergraduate medical teaching. The Curriculum covers 22 different topics, including 13 symptoms and 9 psychosocial issues. The Canadian Curriculum Committee continues to meet and is now considering other national educational initiatives in palliative care. PMID:7506051

  14. Program Assessment Framework for a Rural Palliative Supportive Service

    PubMed Central

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

    2013-01-01

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

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

    PubMed Central

    Michelson, Kelly Nicole; Steinhorn, David M.

    2007-01-01

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

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

    PubMed Central

    2013-01-01

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

  17. Palliative Care: A Holistic Discipline.

    PubMed

    Greer, Steven; Joseph, Marie

    2016-03-01

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

  18. Palliative care: an evolving field in medicine.

    PubMed

    Eti, Serife

    2011-06-01

    Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial, and spiritual. This article discusses illness trajectories and prognostic estimates, prognostic tools, educating physicians and nurses in palliative care, research in palliative medicine, and palliative care in hospitals and the community. PMID:21628032

  19. Palliative Care for the Geriatric Anesthesiologist.

    PubMed

    Gustin, Allen N; Aslakson, Rebecca A

    2015-09-01

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

  20. Palliative care initiative for the Eastern Mediterranean Region: a proposal.

    PubMed

    Al-Shahri, Mohammad Zafir; Brown, Stuart; Ezzat, Adnan; Khatib, Oussama

    2004-01-01

    The Eastern Mediterranean Region (EMR), with 22 countries and about half a billion people, has scarce palliative care services that are far from meeting the needs of the region. The authors of this paper believe that the resources and international influence of the World Health Organization could be combined with the excellent palliative care expertise of King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia to establish a collaborative initiative for promotion of palliative care services in the region. This proposal is based on the major components of professional training, development of regional guidelines, integration of palliative care into health plans and polices, and ensuring availability of essential medications. Investment in developing palliative care in the EMR would be expected to relieve the suffering of hundreds of thousands of patients and families in this part of the world. PMID:15646166

  1. Linguistic competence/language access services (LAS) in end-of-life and palliative care: a social work leadership imperative.

    PubMed

    Le Sage, Margie Rodrguez

    2006-01-01

    Despite the mandated and moral imperative to advance linguistic competence in all health care contexts, leadership that addresses this area of practice and study in end-of-life and palliative care is not readily obvious. Because social work is ideally suited to lead efforts to advance linguistically-accessible end-of-life and palliative care, social workers are encouraged to assume the challenge. This article focuses on topics that are elementary yet central to discussions on language diversity and leadership initiatives to advance language access in end-of-life and palliative care contexts: importance and function of language, extent of language diversity, inequity related to language diversity, mandates and standards related to language access, and approaches and competencies that contribute positively to language access. PMID:17387093

  2. Barriers to Optimal Palliative Care of Lung Transplant Candidates

    PubMed Central

    Colman, Rebecca E.; Curtis, J. Randall; Nelson, Judith E.; Efferen, Linda; Hadjiliadis, Denis; Levine, Deborah J.; Meyer, Keith C.; Padilla, Maria; Strek, Mary; Varkey, Basil

    2013-01-01

    Background: The provision of effective palliative care is of great importance to patients awaiting lung transplantation. Although the prospect of lung transplantation provides hope to patients and their families, these patients are usually very symptomatic from their underlying disease. Methods: An e-mail questionnaire was sent to members of the American College of Chest Physicians Transplant NetWork and the Pulmonary Council of the International Society for Heart and Lung Transplantation (ISHLT). The survey included questions about barriers to providing palliative care, the availability of palliative care services, and recommended strategies to improve palliative care for lung transplant candidates. Results: The 158 respondents represented approximately 65% of transplant programs in the ISHLT registry. Respondents were in practice a mean of 11.3 ( 9) years, 70% were pulmonologists, 17% were surgeons, and 13% were other care providers. Barriers were classified into domains including patient factors, family factors, physician factors, and institutional/transplant program/lung allocation system factors. Significant patient/family barriers included unrealistic patient/family expectations about survival, unwillingness to plan end-of-life care, concerns about abandonment or inappropriate care after enrollment in a palliative care program, and family disagreements about care goals. For institutional/program/allocation system barriers, only the requirement for weight loss or gain to meet program-specific BMI requirements was identified. Significant physician barriers included competing time demands and the seemingly contradictory goals of transplant vs palliative care. Strategies recommended to improve palliative care included routine advance care planning for patients awaiting transplantation, access to palliative care specialists, training of transplant physicians in symptom management, and regular meetings among transplant physicians, nurses, patients, and families. Conclusions: Physicians providing care to lung transplant candidates reported considerable barriers to the delivery and acceptance of palliative care and identified specific strategies to improve palliative care for lung transplant candidates. PMID:22922517

  3. Paediatric Palliative Care: Theory to Practice

    PubMed Central

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

    2011-01-01

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

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

    PubMed

    Mutafoglu, Kamer

    2011-04-01

    Turkey is among the countries with only "capacity building activity" in terms of palliative care development according to the mapping levels reported by the International Observatory on End of Life Care (http://www.eolc-observatory.net/global/pdf/world_map.pdf). Palliative care units are lacking even in major hospitals. Although some medical oncologists and pain specialists have been providing pain control and symptom relief to some extend, all these interventions remain a fragmented approach to care since there are no palliative care programs. Establishing palliative care services should be a priority in the development of comprehensive cancer care, particularly in a country where more than 60% of the cancer patients present with advanced stage disease. Like all the other university hospitals in the country, palliative care services have not been established so far in Dokuz Eylul University Hospital for several reasons although almost all the modern cancer treatment modalities have been provided to cancer patients. A group of health professionals have recently started a palliative care initiative in the hospital with an aim to raise awareness and to implement basic palliative care interventions to the current cancer care. This paper aims to tell the story of how this initiative get started and which step were taken so far. PMID:21448044

  5. Surgical palliative care.

    PubMed

    Milch, Robert A

    2005-04-01

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

  6. Heart failure - palliative care

    MedlinePLUS

    ... to make life easier and keep you safe . Hospice units in hospitals and other nursing facilities are also an option. Advance care directives are documents that state the type of care you would like to have if you are unable to speak for yourself.

  7. Music therapy in palliative care.

    PubMed Central

    Munro, S.; Mount, B.

    1978-01-01

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

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

    PubMed

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

    2015-04-01

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

  9. Surgical palliative care in Haiti.

    PubMed

    Huffman, Joan L

    2011-04-01

    Palliative care in itself has many challenges; these challenges are compounded exponentially when placed in the setting of a mass casualty event, such as the 2010 Haiti earthquake. Haiti itself was an austere environment with very little infrastructure before the disaster. US surgeons, intensivists, and nurses worked hand in hand with other international providers and Haitian volunteers to provide the best care for the many. Improvisation and teamwork as well as respect for the Haitian caregivers were crucial to their successes. Sisyphean trials lie ahead. Haiti and its people must not be forgotten. PMID:21419263

  10. Quality indicators for paediatric palliative care

    PubMed Central

    Charlebois, Janie; Cyr, Claude

    2015-01-01

    OBJECTIVES: To apply quality indicators for paediatric palliative care and evaluate performance in one service provision area. METHODS: After institutional review board approval, medical records were abstracted for well-defined and measurable quality indicators for children with chronic complex conditions (CCCs) between January 2006 and December 2011 (n=50) at a university medical centre. RESULTS: Of the 50 children with a CCC (mean age 64 months, 48% female), 39 (78%) died in hospital, 11 (22%) died at home and 13 (26%) were <1 month of age. In the final month of their life, 10 patients (20%) required an unplanned visit to the emergency department and seven (14%) were admitted. Only four patients (8%) were admitted for >14 days in their final month of life. Goals of care were addressed in a timely manner 60% of the time. An invasive procedure was performed in the final month of life in 27 (44%) patients. Bereavement follow-up was offered to 25 (50%) families. A palliative care consultant was involved with 17 (34%) patients. Palliative care was associated with less frequent invasive procedures in the final month of life and more frequent documentation of the preferred place of death. CONCLUSION: Performance on these particular quality indicators was unsatisfactory across a diverse group of children with CCCs, indicating important opportunities for improvement. Methods used to improve the quality of other aspects of paediatric care, including emphasis on efficient work systems, practical tools and interdisciplinary teamwork, should be used for ensuring delivery of high-quality palliative care. PMID:25914573

  11. Update in Hospital Palliative Care

    PubMed Central

    Anderson, Wendy G.; Flint, Lynn A.; Horton, Jay R.; Johnson, Kimberly; Mourad, Michelle; Sharpe, Bradley A.

    2013-01-01

    Background Seriously ill patients frequently receive care in hospitals, and palliative care is a core competency for hospitalists. We aimed to summarize and critique recent research that has the potential to impact the clinical practice of palliative care in the hospital. Methods We reviewed articles published between January 2012 and May 2013, identified through hand-search of leading journals and PubMed. The authors collectively selected 9 articles based on their scientific rigor and relevance to hospital practice. We review their findings, strengths and limitations and make recommendations for practice. Results Key finding include: Indwelling pleural catheters and talc pleurodesis provide similar relief of dyspnea in patients with malignant pleural effusions; Oxygen many not be needed to prevent dyspnea in many dying patients; Docusate may not be needed in addition to sennosides to treat opioid-induced constipation; Atropine is no more effective than placebo in treating respiratory rattles in dying patients; Many older adult survivors of in-hospital CPR are alive up to one year after discharge; Observing CPR may decrease family post-traumatic stress; Surrogates of ICU patients often interpret prognostic information optimistically; Many patients with metastatic cancer feel that chemotherapy may cure their disease; Viewing a goals of care video may decrease preference for CPR in patients being admitted to skilled nursing facilities. Conclusions Recent research provides important insights into the effectiveness of medications and interventions for symptom management, outcomes of CPR for patients and families, and communication and advance care planning in the hospital. PMID:24214838

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

    PubMed

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

    2016-01-01

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

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

    PubMed

    Love, Barbara; Cook, Audra

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

  14. Palliative care in pediatric patients with hematologic malignancies.

    PubMed

    Humphrey, Lisa; Kang, Tammy I

    2015-12-01

    Children with advanced cancer, including those with hematologic malignancies, can benefit from interdisciplinary palliative care services. Palliative care includes management of distressing symptoms, attention to psychosocial and spiritual needs, and assistance with navigating complex medical decisions with the ultimate goal of maximizing the quality-of-life of the child and family. Palliative care is distinct from hospice care and can assist with the care of patients throughout the cancer continuum, irrespective of prognosis. While key healthcare organizations, including the Institute of Medicine, the American Academy of Pediatrics and the American Society of Clinical Oncology among many others endorse palliative care for children with advanced illness, barriers to integration of palliative care into cancer care still exist. Providing assistance with advance care planning, guiding patients and families through prognostic uncertainty, and managing transitions of care are also included in goals of palliative care involvement. For patients with advanced malignancy, legislation, included in the Patient Protection and Affordable Health Care Act allows patients and families more options as they make the difficult transition from disease directed therapy to care focused on comfort and quality-of-life. PMID:26637763

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

    MedlinePLUS

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

  16. Improving electronic information sharing for palliative care patients

    PubMed Central

    Pringle, Amanda; Finucane, Anne; Oxenham, David

    2014-01-01

    Coordination of services used by palliative care patients across care contexts is essential in providing patient centred care. In Lothian, Edinburgh, a baseline audit in 2008 of patients known to all four specialist palliative care teams revealed only 49% had information available to out of hours (OOH) general practitioners (GPs). This highlighted the poor handover and sharing of information, which are essential for providing quality care for palliative patients in accordance with their wishes, and for reducing inappropriate hospital admissions. A number of quality improvement measures have been introduced, some nationally in Scotland, such as the roll out of Electronic Palliative Care Summaries (ePCS) an electronic register containing up to date information including patient wishes and latest treatment decisions. In addition there have been changes to the GP Quality Outcomes Framework encouraging the use of electronic records. Locally, at Marie Curie Hospice, drivers were implemented including hosting GP education evenings promoting ePCS use, alteration of hospice discharge letter format to complement ePCS completion, in addition to offering specialist nurse support and presence at GP practice palliative care register meetings. A re-audit in 2012 revealed that 75% of specialist palliative care patients had electronic information available to OOH services, and in 2013, 71% of patients. This represents a significant improvement in electronic information sharing across care contexts. Building on the progress of ePCS, a new Electronic Key Information Summary is currently being rolled out across Scotland. This quality improvement report reflects on the positive measures taken to address the important clinical need of effective electronic handover for specialist palliative care patients in Lothian. Furthermore, it highlights the ongoing requirement to continue to improve the quality and availability of electronically shared information for every patient known to palliative care services across care contexts. PMID:26732697

  17. Improving electronic information sharing for palliative care patients.

    PubMed

    Pringle, Amanda; Finucane, Anne; Oxenham, David

    2014-01-01

    Coordination of services used by palliative care patients across care contexts is essential in providing patient centred care. In Lothian, Edinburgh, a baseline audit in 2008 of patients known to all four specialist palliative care teams revealed only 49% had information available to out of hours (OOH) general practitioners (GPs). This highlighted the poor handover and sharing of information, which are essential for providing quality care for palliative patients in accordance with their wishes, and for reducing inappropriate hospital admissions. A number of quality improvement measures have been introduced, some nationally in Scotland, such as the roll out of Electronic Palliative Care Summaries (ePCS) - an electronic register containing up to date information including patient wishes and latest treatment decisions. In addition there have been changes to the GP Quality Outcomes Framework encouraging the use of electronic records. Locally, at Marie Curie Hospice, drivers were implemented including hosting GP education evenings promoting ePCS use, alteration of hospice discharge letter format to complement ePCS completion, in addition to offering specialist nurse support and presence at GP practice palliative care register meetings. A re-audit in 2012 revealed that 75% of specialist palliative care patients had electronic information available to OOH services, and in 2013, 71% of patients. This represents a significant improvement in electronic information sharing across care contexts. Building on the progress of ePCS, a new Electronic Key Information Summary is currently being rolled out across Scotland. This quality improvement report reflects on the positive measures taken to address the important clinical need of effective electronic handover for specialist palliative care patients in Lothian. Furthermore, it highlights the ongoing requirement to continue to improve the quality and availability of electronically shared information for every patient known to palliative care services across care contexts. PMID:26732697

  18. When and why should patients with hematologic malignancies see a palliative care specialist?

    PubMed

    LeBlanc, Thomas W; El-Jawahri, Areej

    2015-12-01

    Palliative care is a multidisciplinary approach to symptom management, psychosocial support, and assistance in treatment decision-making for patients with serious illness and their families. It emphasizes well-being at any point along the disease trajectory, regardless of prognosis. The term "palliative care" is often incorrectly used as a synonym for end-of-life care, or "hospice care". However, palliative care does not require a terminal diagnosis or proximity to death, a misconception that we will address in this article. Multiple randomized clinical trials demonstrate the many benefits of early integration of palliative care for patients with cancer, including reductions in symptom burden, improvements in quality-of-life, mood, and overall survival, as well as improved caregiver outcomes. Thus, early concurrent palliative care integrated with cancer-directed care has emerged as a standard-of-care practice for patients with cancer. However, patients with hematologic malignancies rarely utilize palliative care services, despite their many unmet palliative care needs, and are much less likely to use palliative care compared to patients with solid tumors. In this article, we will define "palliative care" and address some common misconceptions regarding its role as part of high-quality care for patients with cancer. We will then review the evidence supporting the integration of palliative care into comprehensive cancer care, discuss perceived barriers to palliative care in hematologic malignancies, and suggest opportunities and triggers for earlier and more frequent palliative care referral in this population. PMID:26637760

  19. Palliative care of First Nations people

    PubMed Central

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

    2009-01-01

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

  20. Current trends in palliative heart care.

    PubMed

    Shi, Rongyun

    2016-02-01

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

  1. [Use of music in palliative care].

    PubMed

    Skrbina, Dijana; Simunovi?, Dubravka; Santek, Vjerocka; Njegovan-Zvonarevi?, Tatjana

    2011-12-01

    Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques allow the diversity of objectives in treating patients such as reducing anxiety and stress, relaxation, pain control, reducing confusion spiritual, emotional expression, experience, self-awareness, encourage creative expression, causing mood swings - emotional, cognitive and behavioral, inducing the patient's imagination, enabling patient's chronological classification of life experiences, and the elaboration of unresolved pain, sorrow or errors. Adequate selection and use of musical techniques in palliative care in the service of achieving the best possible quality of life for patients at the end of life. PMID:22994012

  2. Palliative Dental Care- A Boon for Debilitating

    PubMed Central

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

    2014-01-01

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

  3. Growing Pains: Palliative Care Making Gains

    Cancer.gov

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

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

    PubMed

    Jamwal, Nisha Rani; Kumar, Senthil P

    2016-01-01

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

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

    PubMed Central

    Jamwal, Nisha Rani; Kumar, Senthil P

    2016-01-01

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

  6. 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

  7. Frailty: an indication for palliative care.

    PubMed

    Raudonis, Barbara M; Daniel, Kathryn

    2010-01-01

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

  8. Prostate cancer: palliative care and pain relief.

    PubMed

    Kaya, E; Feuer, D

    2004-01-01

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

  9. Palliative care reimagined: a needed shift.

    PubMed

    Abel, Julian; Kellehear, Allan

    2016-03-01

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

  10. Medical use of marijuana in palliative care.

    PubMed

    Johannigman, Suzanne; Eschiti, Valerie

    2013-08-01

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

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

    PubMed

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

    2012-01-01

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

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

    PubMed

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

    2015-05-01

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

  13. Palliative care for the older adult.

    PubMed

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

    2007-02-01

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

  14. Palliative care in Norway: a national public health model.

    PubMed

    Kaasa, Stein; Jordhy, Marit S; Haugen, Dagny Faksvg

    2007-05-01

    Palliative care (PC) in Norway has evolved in close cooperation between the health authorities and health care professionals. A number of official reports and national plans have promoted a stepwise development of PC services on all levels of the public health care system: tertiary care, with palliative medicine units in university hospitals coupled with research groups and regional Units of Service Development; secondary care, with hospital-based consult teams, inpatient units, and outpatient clinics; and primary care, with home care and designated PC units in nursing homes. The regional Units of Service Development are specifically assigned to research, education, and audit, as well as to development and coordination of services. PC has been closely linked to cancer care and included in the national cancer strategy. Starting the organizational development at the tertiary level has been crucial for educational and audit purposes, and has provided an excellent basis for networking. The Norwegian strategy for PC has resulted in rapidly increasing quantity and quality of services, but several challenges are still pending. Further improvement of the financial reimbursement system is needed, in particular concerning the funding for PC units in nursing homes. There are also challenges related to expertise and training, including establishing a program for palliative nursing and getting palliative medicine recognized as a medical specialty. PMID:17482054

  15. 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

  16. 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

  17. Palliative Care: What You Should Know

    MedlinePLUS

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

  18. Find a Hospice or Palliative Care Provider

    MedlinePLUS

    ... My Committees Marketplace Find a Provider Find a Vendor NHPCO Find a Provider Please use ... National Hospice and Palliative Care Organization 1731 King Street, Suite 100 Alexandria, Virginia 22314 703-837-1500 ( ...

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

    PubMed

    Dunning, Trisha

    2016-01-01

    Palliative care is a philosophy and a system for deciding care and can be used alone or integrated with usual chronic disease care. Palliative care encompasses end-of-life care. Palliative care aims to enhance quality of life, optimize function and manage symptoms including early in the course of chronic diseases. The purposes of this article are to outline palliative care and discuss how it can be integrated with usual care of diabetic foot wounds. Many people with diabetes who have foot wounds also have other comorbidities and diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, functional status, surgical risk and quality of life. Two broad of diabetic foot disease exist: those likely to heal but who could still benefit from integrated palliative care such as managing pain and those where healing is unlikely where palliation can be the primary focus. People with diabetes can die suddenly, although the life course is usually long with periods of stable and unstable disease. Many health professionals are reluctant to discuss palliative care or suggest people to document their end-of-life care preferences. If such preferences are not documented, the person might not achieve their desired death or place of death and health professionals and families can be confronted with difficult decisions. Palliative care can be integrated with usual foot care and is associated with improved function, better quality of life and greater patient and family satisfaction. Copyright © 2016 John Wiley & Sons, Ltd. PMID:26813620

  20. Pediatric Palliative Care in the Intensive Care Unit.

    PubMed

    Madden, Kevin; Wolfe, Joanne; Collura, Christopher

    2015-09-01

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

  1. 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.

  2. 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.…

  3. Palliative care in Africa: a global challenge

    PubMed Central

    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

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

    PubMed

    Bhatnagar, Tigmanshu

    2015-01-01

    The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice. PMID:26009683

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

    PubMed

    Tsuneto, Satoru

    2013-01-01

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

  6. [Neonatal palliative care and culture].

    PubMed

    Btrmieux, 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

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

    PubMed

    Lillyman, Sue; Bruce, Mary

    2016-02-01

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

  8. 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

  9. Integrating palliative care into the trajectory of cancer care

    PubMed Central

    Hui, David; Bruera, Eduardo

    2016-01-01

    Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We end by discussing how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available. PMID:26598947

  10. Young adult palliative care: challenges and opportunities.

    PubMed

    Clark, Jennifer K; Fasciano, Karen

    2015-02-01

    Young adulthood is a time of immense growth and possibilities. As a result, it is also a time when serious illness can have profound effects. This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. From the data, 2 primary themes emerged (1) ongoing young adult development not only generates unique biologic disease burdens and clinical treatment options but also requires frequent assessment and promotion and (2) binary health care systems often leave young adults without access to developmentally appropriate health care. Given its interdisciplinary approach, palliative care is uniquely poised to address the challenges known to caring for the seriously ill young adult. PMID:24198063

  11. Prevalence of Hyponatremia in Palliative Care Patients

    PubMed Central

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

    2016-01-01

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

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

    PubMed

    Reville, Barbara; Foxwell, Anessa M

    2014-07-01

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

  13. [Palliative care for a homeless person].

    PubMed

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

    2015-01-01

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

  14. Prostate cancer: palliative care and pain relief.

    PubMed

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

    2007-01-01

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

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

    PubMed

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

    2001-11-01

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

  16. Current status of pediatric hematology/oncology and palliative care in Lebanon: a physician's perspective.

    PubMed

    Noun, Peter; Djambas-Khayat, Claudia

    2012-03-01

    Children with cancer suffer a lot, especially those in developing countries with limited health resources. Although pediatric hematology/oncology has become a well-developed subspecialty in Lebanon, pediatric palliative care is still underrecognized. The current pediatric hematology/oncology and palliative care services in Lebanon are reviewed in this article. We stress upon the adverse consequences of absence of well-defined pediatric palliative care in order for it to be recognized and integrated as a new discipline. PMID:22357148

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

    PubMed

    Reid, Lorna; Snowden, Austyn; Kydd, Angela

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

  18. 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 carefor both children and adultsmore intelligible. PMID:25278760

  19. Continuing methadone for pain in palliative care

    PubMed Central

    Hawley, Philippa; Liebscher, Ryan; Wilford, Jessica

    2013-01-01

    BACKGROUND Methadone is one of the most important medications used for the treatment of refractory pain in the palliative care setting, and is usually initially prescribed by one of a limited number of physicians who have acquired authorization for its use. A lack of authorized physicians able to take over prescribing when the patient is stable is a barrier to accessing methadone for analgesia. OBJECTIVE: To determine the barriers to family physicians becoming authorized to prescribe methadone for pain in palliative care. METHODS: A survey exploring the perceived barriers to continuing methadone for pain in palliative care following initial prescription by a specialist was mailed to a randomly selected group of 870 family physicians in British Columbia. RESULTS: The response rate was 30.9%. Of the 204 responding physicians, 76.1% described themselves as positioned to provide ongoing palliative care to their patients. Within this group, 38 (18.6%) were already authorized to prescribe methadone for pain. The remaining 166 (81.4%) had significant knowledge deficits regarding methadone use in palliative care, but were largely aware of their deficits, and more than one-half were willing to learn more and to obtain an authorization if requested. CONCLUSIONS: Responding family physicians had mostly received little education regarding methadone for pain, but were aware of their need for education and were willing to learn. Physicians who had already become authorized were generally satisfied with the process of authorization, and believed the process of education through authorization was appropriate and not onerous. PMID:23662290

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

    PubMed

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

    1997-11-01

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

  1. [The role of laughter in palliative care].

    PubMed

    Bgnon, Julie; Vigneron, Sylvie

    2015-03-01

    A team has studied the impact of laughter in palliative care. For the majority of caregivers, laughter is perceived as a complementary tool for supporting patients, but many are reluctant to use it. Patients, for their part, are receptive to it. Used in the correct doses, laughter can enrich care. PMID:26145138

  2. Palliative Care Enrichment in Geropsychology Fellowships.

    ERIC Educational Resources Information Center

    Strauss, Gerald; Nelson, Barbara J.

    1996-01-01

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

  3. Palliative Care for the Seriously Ill

    PubMed Central

    Kelley, Amy S.; Morrison, R. Sean

    2015-01-01

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

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

    PubMed

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

    2015-12-01

    The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members. Pediatr Blood Cancer 2015 Wiley Periodicals, Inc. PMID:26700928

  5. 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

  6. 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

  7. Role of codeine in palliative care.

    PubMed

    Prommer, Eric

    2011-01-01

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

  8. [Sedation in palliative medicine: Guidelines for the use of sedation in palliative care : European Association for Palliative Care (EAPC)].

    PubMed

    Alt-Epping, B; Sitte, T; Nauck, F; Radbruch, L

    2010-08-01

    The European Association for Palliative Care (EAPC) considers sedation to be an important and necessary therapy option in the care of selected palliative care patients with otherwise refractory distress. Prudent application of this approach requires due caution and good clinical practice. Inattention to potential risks and problematic practices can lead to harmful and unethical practice which may undermine the credibility and reputation of the responsible clinicians and institutions as well as the discipline of palliative medicine more generally. Procedural guidelines are helpful to educate medical providers, set standards for best practice, promote optimal care and convey the important message to staff, patients and families that palliative sedation is an accepted, ethical practice when used in appropriate situations. EAPC aims to facilitate the development of such guidelines by presenting a 10-point framework that is based on the pre-existing guidelines and literature and extensive peer review. PMID:20661593

  9. Using Skype to support palliative care surveillance.

    PubMed

    Jones, Jacqueline

    2014-02-01

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

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

    PubMed Central

    Meier, Diane E.

    2013-01-01

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

  11. Dedicated Education Unit Model in a Hospice and Palliative Care Setting.

    PubMed

    Chmura, Joanne Q

    2016-01-01

    This article describes adapting the dedicated education unit model to the hospice/palliative care setting. The purpose of this qualitative study was to demonstrate how this unique academic service model helps to address the void that exists in hospice and palliative care in the clinical education of prelicensure nursing students. PMID:26154419

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

    PubMed

    De Simone, Gustavo G

    2003-01-01

    Argentina is a large South American country with a high prevalence of chronic disease-related mortality and a clear need for implementation of palliative care. Primary concerns related to palliative care are cultural, socio-economic and educational. Increasing poverty, patients and families receiving inadequate information about their diagnosis or prognosis, drug availability and costs, and insufficient knowledge by health care providers are obstacles to palliative care. Palliative care programs are developing throughout the country and methods by which they are meeting their needs are described. Several Argentinean palliative care initiatives are described and the role of the Pallium Latinomrica training program is discussed. PMID:15022949

  13. [Palliative care regulation and assisted death].

    PubMed

    Cosso-Daz, Jos Ramn; Franco Gonzlez-Salas, Jos Fernando; Kershenobich-Stalnikowitz, David; Goslinga-Remrez, Lorena; Montes de Oca-Arboleya, Rodrigo; Torres-Morn, Laura Estela; Caldern-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

  14. [Palliative care day hospital and nursing coordination].

    PubMed

    Teillet, Fabienne

    2015-11-01

    The palliative care day hospital is still underdeveloped in France, unlike in Anglo-Saxon countries. Its main mission is to help improve the quality of life at home of the patient suffering from a serious and progressive disease. It offers an inter-disciplinary and global approach in which the nurse's role is quite specific. PMID:26567073

  15. [Massage in a palliative care network].

    PubMed

    Blanchon, Carine

    2014-01-01

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

  16. Nutrition issues and tools for palliative care.

    PubMed

    Cline, David

    2006-01-01

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

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

    PubMed Central

    2014-01-01

    Background Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Results Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time. Conclusion Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its rapid methodology and focus on model elements relevant to Australia’s health system. PMID:24670065

  18. 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

  19. Palliative care - shortness of breath

    MedlinePLUS

    ... if it is mild, tell someone on your hospice care team. Finding the cause will help the team ... ray or an ECG (electrocardiogram) my help your hospice care team locate a possible heart or lung problem. ...

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

    PubMed

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

    2008-12-01

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

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

    PubMed Central

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

    1998-01-01

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

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

    PubMed

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

    2012-11-01

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

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

    PubMed Central

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

    2016-01-01

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

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

    PubMed Central

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

    2000-01-01

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

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

    PubMed

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

    2013-01-01

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

  6. 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

  7. Gabapentin for intractable hiccups in palliative care.

    PubMed

    Tegeler, Monica L; Baumrucker, Steven J

    2008-01-01

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

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

    PubMed

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

    2009-01-01

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

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

    PubMed

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

    2011-09-01

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

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

    PubMed Central

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

    2014-01-01

    The International Children’s Palliative Care Network (ICPCN) held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, in Mumbai, India, from 10–12 February 2014. The theme of the conference, Transforming children’s palliative care—from ideas to action, reflected the vision of the ICPCN to live in a world where every child who needs it, can access palliative care, regardless of where they live. Key to this is action, to develop service provision and advocate for children’s palliative care. Three pre-conference workshops were held on 9 February, aimed at doctors, nurses, social workers, and volunteers, and focused around the principles of children’s palliative care, and in particular pain and symptom management. The conference brought together 235 participants representing 38 countries. Key themes identified throughout the conference included: the need for advocacy and leadership; for education and research, with great strides having been taken in the development of an evidence base for children’s palliative care, along with the provision of education; the importance of communication and attention to spirituality in children, and issues around clinical care, in particular for neonates. Delegates were continually challenged to transform children’s palliative care in their parts of the world and the conference culminated in the signing of the ICPCN Mumbai Declaration. The Declaration calls upon governments around the world to improve access to quality children’s palliative care services and made a call on the Belgian government not to pass a bill allowing children to be euthanised in that country. The conference highlighted many of the ongoing developments in children’s palliative care around the world, and as she closed the conference, Joan Marston (ICPCN CEO) challenged participants to take positive action and be the champions that the children need, thus transforming children’s palliative care. PMID:24761156

  11. The Changing Role of Palliative Care in the ICU

    PubMed Central

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

    2015-01-01

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

  12. Palliative Care and Hospice in Advanced Heart Failure

    PubMed Central

    LeMond, Lisa; Allen, Larry A.

    2013-01-01

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

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

    PubMed

    Brown, Allyson; Clark, Jonna D

    2015-09-01

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

  14. Palliative Care in the Emergency Department

    PubMed Central

    Mierendorf, Susanne M; Gidvani, Vinita

    2014-01-01

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

  15. Palliative care in patients with lung cancer

    PubMed Central

    Farbicka, Paulina

    2013-01-01

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

  16. Symptomatic and palliative care for stroke survivors.

    PubMed

    Creutzfeldt, Claire J; Holloway, Robert G; Walker, Melanie

    2012-07-01

    Stroke is the leading cause of disability and one of the most common causes of death worldwide. Outside the setting of acute management, secondary prevention and stroke rehabilitation, little has been written to address the ongoing symptomatic and palliative needs of these patients and their families. In this literature review, we look beyond secondary prevention with the aim of providing evidence-informed management guidelines for the myriad and often under-recognized symptomatic and palliative care needs of stroke survivors. Some of the most common and disabling post-stroke symptoms that are reviewed here include central post-stroke pain, hemiplegic shoulder pain, painful spasticity, fatigue, incontinence, post-stroke seizures, sexual dysfunction, sleep-disordered breathing, depression and emotionalism. We review the role of caregivers and explore ways to support them and, lastly, remind the reader to be perceptive to the patient's spiritual needs. The literature is most robust, including controlled trials, for central post-stroke pain and depression. Synthesis and discussion outside these areas are frequently limited to smaller studies, case reports and expert opinion. While some data exists to guide informed decision-making, there is an urgent need to document best practice and identify appropriate clinical standards for the full spectrum of symptoms experienced by stroke survivors. We present the current and established data to aid health care providers in symptomatic and palliative management of stroke survivors. PMID:22258916

  17. Hospice palliative care volunteers: a Unique Care Link.

    PubMed

    Weeks, Lori E; Macquarrie, Colleen; Bryanton, Olive

    2008-01-01

    In this research, we endeavoured to gain a clearer understanding of what impact hospice palliative care (HPC) volunteers have on family caregivers and the underlying factors that contribute to this. We conducted ten face-to-face interviews with bereaved women who had previously provided care for their spouses and who used HPC volunteers. We checked our interpretation through a feedback focus group. Using a methodological hermeneutic approach, we came to understand the unique position HPC volunteers occupy within the formal health care system. Our constitutive organizing theme was manifest throughout the women's stories in seven thematic areas that explicate the dimensions of the overarching theme: the Unique Care Link. We identified seven themes that exemplify specific ways in which HPC volunteers have a positive impact on the lives of spousal caregivers. This knowledge can be incorporated into the further development of training and support programs for HPC volunteers, and to increase the quality of volunteer HPC services provided to family members. PMID:18681244

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

    PubMed

    Kelsall, Kay; Brennan, Ebony; Cole, Teresa

    2015-08-01

    This paper presents the development and implementation of a recurrently funded, rolling, 6-month palliative care secondment programme for NHS community staff nurses based in a rural health economy in Southwest England. The programme is a key tool in a wider development plan for improving access to, and the quality of, palliative and end-of-life care for a dispersed rural population. This is part of a much bigger programme of integration to meet the shared challenges of service capacity, equity, and sustainability that are presented by the geographical and demographical profile of the locality. The 'bigger picture' is defined and set in the context of the national drive and evidence base for integration in order to explain the reasons behind the secondment programme. This is followed by outlining the iterative process of design and implementation--the 'what?' and 'how?'--and key learning points to date are shared. PMID:26252232

  19. Community Palliative Care in Turkey: A Collaborative Promoter to a New Concept in the Middle East.

    PubMed

    Hackamiloglu, Ezgi; Utku, Ezgi Simsek; Cukurova, Zafer; Keskinkilic, Bekir; Topcu, Ibrahim; Gultekin, Murat; Silbermann, Michael

    2016-01-01

    The Middle East has been struggling with basic issues of cancer care, and in specific, palliative care, at the primary health care level in the communities. The Middle East Cancer Consortium designated this issue as the highest priority of its activities in the region. Following basic and advanced courses and national and international workshops, local governments recognized the essentiality of developing palliative care services in their respective countries. As the result of these training activities, in 2010, the Ministry of Health in Turkey initiated a novel program whereby population-based and home-based palliative care teams were developed throughout the country, including peripheral regions in the countries where appropriate care was not available. This initiative led to a dramatic increase in the number of cancer patients receiving palliative care at their homes. The Turkish initiative can serve as a model to other countries in the Middle East and beyond it. PMID:26598953

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

    PubMed

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

    2016-01-01

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

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

    PubMed

    Ando, Shoko

    2003-12-01

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

  2. Palliative care and African American women living with HIV.

    PubMed

    DeMarco, Rosanna F

    2010-08-01

    It is challenging to develop and assess skills in a classroom setting, for graduate students particularly, in the area of quality improvement project plans that are real, relevant, and sensitive in a unique health care context. Although understanding significant issues related to palliative care needs of U.S. citizens through the interpretation of those who publish in this area is extremely helpful to students, it does not allow for an experience uniquely situated in realities faced by those living with life-threatening and chronic illness or in a time frame that is current. Graduate students in a Health Resources and Services Administration-funded program of study completed a secondary data analysis of digitally recorded conversations of African American women living with human immunodeficiency virus or acquired immune deficiency syndrome to identify consumer-driven palliative care needs and create possible quality improvement program solutions. This exercise supports the World Health Organization's advice to become palliative care leaders through engagement in clients' realities. PMID:20438028

  3. [Palliative care in the neonatal period. Part one: general considerations].

    PubMed

    Btrmieux, P; Gold, F; Parat, S; Caeymaex, L; Danan, C; De Dreuzy, P; Vernier, D; Viallard, M-L; Kuhn, P

    2010-04-01

    In France, the law dated 22 April 2005 required that all practitioners offer palliative care to patients as an alternative to unreasonable obstinacy. The practical development of palliative care during the neonatal period is not easy, even though obstetricians and neonatologists have always been aware of the ethical necessity of comfort in the dying newborn. The decision leading to palliative care begins with the recognition of patent or potential unreasonable obstinacy, followed by withdrawing treatment and technical support, and finally a palliative care plan is drawn up with the medical team and the parents. PMID:20206482

  4. Integrating Palliative Care into the Pediatric Intensive Care Unit A Report from the IPAL-ICU (Improving Palliative Care in the ICU) Advisory Board

    PubMed Central

    Boss, Renee; Nelson, Judith; Weissman, David; Campbell, Margaret; Curtis, Randall; Frontera, Jennifer; Gabriel, Michelle; Lustbader, Dana; Mosenthal, Anne; Mulkerin, Colleen; Puntillo, Kathleen; Ray, Daniel; Bassett, Rick; Brasel, Karen; Hays, Ross

    2014-01-01

    Objective This review highlights the benefits that patients, families and clinicians can expect to realize when palliative care service is intentionally incorporated into the PICU, focusing on pain and symptom management, enhancing quality of life, communication and decision-making, length of stay and sites of care, and grief and bereavement. Data Sources MEDLINE Data Synthesis and Conclusions The American Academy of Pediatrics suggests that palliative care should begin at the time of a potentially life-limiting diagnosis and continue throughout the disease trajectory, regardless of the expected outcome. Although the PICU is often used for short term postoperative stabilization, PICU clinicians also care for many chronically ill children with complex underlying conditions and others receiving intensive care for prolonged periods. Integrating palliative care delivery into the PICU is rapidly becoming the standard for high quality care of critically ill children. Interdisciplinary ICU staff can take advantage of the growing resources for continuing education in pediatric palliative care principles and interventions. PMID:25080152

  5. [Palliative care in the light of legal and regulatory requirements in Germany].

    PubMed

    Cremer-Schaeffer, P; Radbruch, L

    2012-02-01

    In Germany, palliative care has developed rapidly since the establishment of the first palliative care unit in 1983. More improvements in patient-centered care are only possible if legal requirements as well as education of physicians, nurses, and other professionals involved in palliative care are adapted to current needs. This paper provides an overview of legal and regulatory requirements including a critical appreciation of their influence on palliative care in Germany. Only recently has medical education in palliative medicine been implemented as an integral part of medical studies at German universities. Starting in 2014, physicians applying for a license to practice medicine will have to provide a certificate of basic training in this field. The challenge in upcoming years will be the establishment and enhancement of comprehensive, standardized, and quality-controlled education at the universities. Only six universities have established chairs for palliative medicine, and it will be essential to not only establish more chairs but also to involve medical students in the development of the education. Only minimal requirements are specified for education of nurses in palliative care in the legislation. However, standardized and quality-controlled advanced training courses are available. This training is frequently requested as a prerequisite for nurses working in palliative care. Only limited education programs exist for other professional groups that are an important part of the palliative care team. In addition to the development of palliative care for inpatients with an increasing number of palliative care units, hospices, and first chairs of palliative medicine, different forms of ambulant palliative care services have been developed. Changes in the legislation have influenced the situation for home care enormously in the last 5years, also making it more complex. With the Law for the Consolidation of the Competition in Compulsory Health Insurance ("Gesetz zur Strkung des Wettbewerbs in der gesetzlichen Krankenversicherung"), a legal claim for palliative home care has been implemented in the fifth book of the social law in 2007. The ambitious goal of full coverage with comprehensive palliative home care has still not been achieved in most locations. However, after initial negotiation difficulties between palliative care providers and health insurance funds, an increasing number of contracts have been made. As a consequence-in addition to more than 240 palliative care units in Germany-more than one hundred palliative care teams have begun work in the field of specialized palliative home care. Legal regulations for the supply of opioids and other medications for the treatment of patients at home have been adapted recently, thus, facilitating fast and comprehensive medical treatment in emergency situations. Overall, the legislation has been adapted significantly, hence, contributing to improvements for patients requiring palliative care. It remains to be seen whether additional adjustments are required in the future. PMID:22290167

  6. 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

  7. [Chronic uremia and palliative care].

    PubMed

    Formica, Marco; Marazzi, Federico; Tamagnone, Michela; Falconi, Daniela; Marengo, Marita; Tattoli, Fabio; Gherzi, Maurizio; Serra, Ilaria; De Prisco, Ornella; Gristina, Giuseppe

    2014-01-01

    Nowadays the choice to start with a renal replacement therapy (or its withdrawal once begun) is a critical issue leading to review the paradigm of constantly treating terminal uremia by means of dialysis technologies, without caring for effective prognosis nor for patients preferences, in a more affordable physician-patient relationship. Furthermore dialysis patients mean age is increasing and such population bears the burden of comorbidities that seriously affect survival and quality of life. In any case, dialysis withdrawing does not mean neglecting the patient: the start, or continuation of a very low protein diet program may represent a reasonable alternative, not only for uremic symptoms control but also providing a slowing of disease progression (at least postponing further the start of renal replacement therapy). Basically, in our opinion, the decision to start dialysis in an eligible patient, mainly in the elderly or frails, it should be driven by an adequate balance among all the factors. These factors play a role not only concerning survival, but also in life quality issues and patients preferences. Thus, we argue that ethical issues must be taken into account as well as compelling clinical factors which usually nephrologists refer to. To pursue this goal, it could be useful to set up specific educational pathways addressed to physicians, nurses and technicians of renal units. It also could be instrumental in developing new strategies to manage end stage renal failure, considering not only hospital facilities,but also nursing and patients homes. Incoming guidelines could help nephrologists in improving their behaviors to face these new issues. PMID:24777917

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

    PubMed Central

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

    2013-01-01

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

  9. Using cannabinoids in pain and palliative care.

    PubMed

    Peat, Sue

    2010-10-01

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

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

    PubMed Central

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

    2016-01-01

    Background: Palliative care in low and middle-income countries is a new discipline, responding to a greater patient need, than in high-income countries. By its very nature, palliative as a specialty has to network with other specialties to provide quality care to patients. For any medical discipline to grow as a specialty, it should be well established in the teaching medical institutions of that country. Data show that palliative care is more likely to establish and grow in an academic health care institution. It is a necessity that multiple networking strategies are adopted to reach this goal. Objectives: (1) To describe a strategic approach to palliative care service development and integration into clinical academic setting. (2) To present the change in metrics to evaluate progress. Design and Setting: This is a descriptive study wherein, the different strategies that are adopted by the Department of Palliative Medicine for networking in an academic health care institution and outside the institution are scrutinized. Measurement: The impact of this networking was assessed, one, at the level of academics and the other, at the level of service. The number of people who attended various training programs conducted by the department and the number of patients who availed palliative care service over the years were assessed. Results: Ten different strategies were identified that helped with networking of palliative care in the institution. During this time, the referrals to the department increased both for malignant diseases (52–395) and nonmalignant diseases (5–353) from 2000 to 2013. The academic sessions conducted by the department for undergraduates also saw an increase in the number of hours from 6 to 12, apart from the increase in a number of courses conducted by the department for doctors and nurses. Conclusion: Networking is an essential strategy for the establishment of a relatively new medical discipline like palliative care in a developing and populous country like India, where the service is disproportionate to the demands. PMID:26962274

  11. 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

  12. 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 ...

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

    PubMed Central

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

    2012-01-01

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

  14. Leveraging external resources to grow and sustain your palliative care program: a call to action.

    PubMed

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

    2012-01-01

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

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

    PubMed Central

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

    2015-01-01

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

  16. Research Priorities in Geriatric Palliative Care: Policy Initiatives

    PubMed Central

    Unroe, Kathleen T.

    2013-01-01

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

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

    ERIC Educational Resources Information Center

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

    2002-01-01

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

  18. OA32?Let's talk about - all ireland survey of palliative care experiences.

    PubMed

    Blaney, Paddie; Mulholland, Cathleen; Molloy, Anne

    2015-04-01

    : "During Phase 1 of the Let's Talk About patient experience survey, 367 responses were submitted by people who use or care (or cared) for someone with a serious or progressive life-limiting condition from across the Republic of Ireland and Northern Ireland. The overall purpose of the Let's Talk About initiative is to gain a better understanding the issues that matter most to individuals so that the design and delivery of services and supports can be improved and tailored accordingly. The method collects individual narratives about a high impact good or bad experience of palliative care services which can be accessed at a micro level combined with a meta-analysis of a large quantity of qualitative information. Input from users and carers, and specialist and general palliative care professional's was reflected in the design of the survey tool, during the engagement phase and with the interpretation of the dataset. This is a novel approach to identifying the lived experience of users in receipt of palliative care which directs focus to the vital aspects of psychosocial wellbeing within the palliative care experience. The results have informed initial strategic recommendations aimed at a variety of key stakeholders including policy makers and commissioners, palliative care providers and agencies with a palliative care interest. Phase II of the survey will complete May 2015 www.letstalk-about.org" Report to reference: Let's Talk About Survey Report: Phase 1 http://aiihpc.org/policy-practice/141/phase-i-report/. PMID:25960454

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

    PubMed

    Davison, Sara N

    2011-01-01

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

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

    PubMed Central

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

    2015-01-01

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

  2. Ethical issues in palliative care: considerations.

    PubMed

    Manima, Abdulla

    2003-01-01

    Discussions on ethics in palliative care often concentrate on issues like patient autonomy or euthanasia. However, the reality in the developing world begs discussion on an entirely different set of problems altogether. One should have a good death, no doubt, but one should also have an opportunity for a good life. Globalization unfortunately seems to worsen many of the burdens of the developing world, like the negative influence of the mighty pharmaceutical industry. Continuing medical education offered only by the pharmaceutical industry instills bias into the minds of most medical professionals. Prescription practices by many professionals are influenced by the industry; so much so, inexpensive drugs or formulations are abandoned in favor of expensive ones, adding to the burden of a much-suffering individual. Palliative care should have been a major force against such evils, but it seems to get more clinical and institutionalized with time, with the social issues taking a back seat. Unethical research practices and preferential treatment in drug availability are practices that continue to marginalize the less privileged. Adoption of the dominant ideology from the West in the developing world also raises problems like cultural unsuitability. Considering that the bulk of the suffering in the world is in poorer countries, these issues need to be addressed. PMID:15022958

  3. Pediatric palliative care in the community.

    PubMed

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

    2015-01-01

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

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

    PubMed

    van der Riet, Pamela; Good, Philip; Higgins, Isabel; Sneesby, Ludmilla

    2008-03-01

    The provision of medically administered nutrition and hydration (MNH) for the terminally ill patient is a controversial issue and there has been much debate in the literature concerning this sensitive subject. This article reports on a qualitative research study that explores palliative care nurses' and doctors' perceptions and attitudes to patient nutrition and hydration at the end of life. Participants were from an urban and rural palliative care service. Three main discourses were identified: carers' distress at the non-provision of MNH; palliative care doctors' and nurses' position that terminal dehydration lessened the burden of suffering for dying patients; and polarisation between the acute care setting and the palliative care setting. Overlaying these three main discourses are contesting discourses involving cure vs comfort, and acute care vs palliative care. Importantly, the findings of this study reveal that palliative doctors and nurses believe that medically assisted nutrition and hydration at the end stage of life rarely benefits patients, and as long as adequate mouth care is given, patients do not suffer. However, family members do experience emotional distress in dealing with this situation. In caring for dying people, the nurse's and doctor's role is one of education and communication, involving a team approach to manage this difficult issue. PMID:18414339

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

    TOXLINE Toxicology Bibliographic Information

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

    2008-03-01

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

  6. Implementation of NCCN Palliative Care Guidelines by member institutions.

    PubMed

    Albizu-Rivera, Alexandra; Portman, Diane G; Thirlwell, Sarah; Codada, Shirley N; Donovan, Kristine A

    2016-02-01

    Increasingly, evidence suggests the integration of palliative care (PC) with standard oncologic care can yield substantial benefits. As part of an effort to improve the PC of cancer patients, the National Comprehensive Cancer Network (NCCN) has developed clinical practice guidelines for PC that promote access to quality, evidence-based PC. This study sought to characterize current implementation of the guidelines by NCCN member institutions. Institutional representatives appointed to the NCCN Palliative Care Guidelines Panel were asked to complete an online survey in the spring of 2014. The survey focused on availability of PC services, screening and referral practices for PC, PC education, and quality improvement programs. The survey was completed by representatives from 21 of 25 NCCN member institutions (84%). A majority routinely provides PC services via interdisciplinary teams; 52% routinely inform patients of the availability, elements, and benefits of PC. The guidelines are most often used to guide clinical practice; only 10% reported using the guidelines to formally screen for PC needs and/or make referrals to PC specialists. Among the 62% of institutions that screen any patients using any available criteria, when a patient screens positive for PC needs, a referral to a PC specialist is made less than half the time. Implementation of PC Guidelines is incomplete and various aspects of the guidelines, such as the recommendation to screen all patients for PC needs, are applied inconsistently. Despite this, most institutions provide PC services in a manner consistent with the guidelines. Greater implementation of the guidelines' recommendations is needed. PMID:26227917

  7. Pediatric palliative care: a qualitative study of physicians' perspectives in a tertiary care university hospital.

    PubMed

    St-Laurent-Gagnon, Thrse; Carnevale, Franco A; Duval, Michel

    2008-01-01

    The objective of this study was to assess the concept of palliative care for a group of physicians in a tertiary care pediatric university hospital. Grounded theory methodology was used. Data included 12 semistructured interviews, field notes, research consent forms, research protocols, and articles published by the participants. Physicians involved in both research and clinical care of severely ill children were interviewed. Data analysis identified three principal themes. First, physicians limited their concept of palliative care to the relief of physical symptoms, equating palliative care with comfort care. Second, there was variation regarding the appropriate moment to introduce palliative care for children. Finally, many physicians were not comfortable using the term "palliative care". Although this study was conducted in one Canadian centre, the results raise questions that should be examined in other settings. A vague concept of palliative care may delay the provision of palliative care to children. PMID:18459594

  8. 78 FR 15958 - Submission for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-13

    ... HUMAN SERVICES National Institutes of Health Submission for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey SUMMARY: Under the provisions of Section 3507(a)(1)(D) of.... Proposed Collection: Pediatric Palliative Care Campaign Pilot Survey, ] 0925-New--National Institute...

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

    PubMed Central

    2010-01-01

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

  10. 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

  11. Indonesia: status of cancer pain and palliative care.

    PubMed

    Soebadi, R D; Tejawinata, S

    1996-08-01

    Indonesia is a large archipelago with an estimated 203,000-365,400 new cancer cases a year. Most cases present in the advanced stage. Pain is the chief complaint in 89% of the patients of the palliative care unit at Dr. Soetomo hospital. The program is a community-based, family-oriented, and culturally adapted home care, widely applicable throughout the country. The service and medication should be affordable, simple, and available. The WHO three-step ladder has been adopted as the method of choice in cancer pain relief. Facilities supportive for the program are the existing health-care delivery system and non-formal support system (Indonesian Cancer Foundation and Organization for Family Welfare Promotion, PKK). The chief constraints for program implementation are the geographical and population problems, lack of resources and funding for the training of health-care workers, and limited availability of oral morphine. PMID:8754994

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

    PubMed

    Hodgson, Nancy A; Lehning, Amanda J

    2008-01-01

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

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

    PubMed Central

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

    2013-01-01

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

  14. 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

  15. [Moral and operational challenges for the inclusion of palliative care in primary health care].

    PubMed

    Floriani, Ciro Augusto; Schramm, Fermin Roland

    2007-09-01

    Palliative care, a model in end-of-life care, is currently undergoing expansion in Brazil. This article emphasizes the need to implement palliative care in primary health care, with an important role in end-of-life care, especially in areas without specialized palliative-care teams. The article discusses key aspects in the organization of this treatment modality and analyzes how palliative care could and should be implemented within primary health care in Brazil. The article describes several challenges for health teams to provide such care, related to the primary caregiver, inherent ethical conflicts, and human resource allocation. PMID:17700942

  16. Gabapentin for pruritus in palliative care.

    PubMed

    Anand, Sheeba

    2013-03-01

    Itch/pruritus can be very distressing in palliative care population and often is difficult to treat. Conventional antihistamines lack efficacy. Cutaneous and central pathogenesis of itch is extremely complex and unclear, making its treatment challenging. Neuronal mechanisms have been identified in the pathophysiology of itch hence providing a myriad of therapeutic options. It has been established that pruritus and pain neuronal pathway interact with each other, hence neuropathic analgesics like gabapentin has shown to be efficacious antipruritic therapeutic option. Gabapentin impedes transmitting nociceptive sensations to brain, thus also suppressing pruritus. Gabapentin is safe and found to be effective in uremic pruritus, cancer/hematologic causes, opiod-induced itch, brachioradial pruritis, burns pruritus, and pruritus of unknown origin. Further research is required in this area to establish whether gabapentin is consistently effective. PMID:22556282

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

    PubMed

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

    2008-01-01

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

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

    PubMed Central

    MacDonald, N

    1998-01-01

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

  19. 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

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

    PubMed

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

    2012-03-01

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

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

    PubMed

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

    2009-02-01

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

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

    PubMed Central

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

    2013-01-01

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

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

    PubMed Central

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

    2015-01-01

    Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved. PMID:25644909

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

    PubMed

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

    2011-08-01

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

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

    PubMed

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

    2015-12-01

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

  6. Ensuring palliative medicine availability: the development of the IAHPC list of essential medicines for palliative care.

    PubMed

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

    2007-05-01

    In response to a request from the World Health Organization (WHO), the International Association for Hospice and Palliative Care (IAHPC) developed a List of Essential Medicines for Palliative Care based on the consensus of palliative care workers from around the world. IAHPC designed a process of five steps, which included developing a set of ethical guidelines; identifying the most common symptoms in palliative care; identifying a list of medications to treat those symptoms; carrying out a survey using a modified Delphi process with participants from developed and developing countries; and convening a meeting of representatives from regional, international, and scientific organizations to develop the final list. Twenty-one symptoms were identified as the most common in palliative care, and an initial list of 120 medications resulted from the initial survey. Seventy-one participants from developing and developed countries responded to the Delphi survey and agreed on the effectiveness and safety of 48 medications for 18 of the 21 symptoms. The final step included discussions among representatives from 26 organizations, which led to the finalization of the list. The IAHPC List of Essential Medicines for Palliative Care includes 33 medications, of which 14 are already included in the WHO Model List. The participants agreed that there is too little evidence to recommend medications for five of the symptoms and suggested that further research be carried out to solve this need. The IAHPC and all the organizations involved in this process welcome suggestions on ways to continue to improve the List of Essential Medicines for Palliative Care and to improve access to medications for patients in need. PMID:17482041

  7. Opportunities for Palliative Care in Public Health.

    PubMed

    De Lima, Liliana; Pastrana, Tania

    2016-03-18

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

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

    PubMed

    Boisseau, Nicolas

    2004-03-27

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

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

    ERIC Educational Resources Information Center

    Thompson, Edward H.

    1986-01-01

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

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

    PubMed

    Normand, Charles

    2009-07-01

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

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

    PubMed

    Carter, Brian S

    2016-02-01

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

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

    PubMed Central

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

    2015-01-01

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

  13. Retroperitoneal Endodermal Sinus Tumor Patient with Palliative Care Needs

    PubMed Central

    Kashyap, Surbhi

    2016-01-01

    This article is a case reflection of a personal encounter on the palliative care treatment required after the removal of a complicated case of a primary extra-gonadal retro-peritoneal endodermal sinus tumor (yolk sac tumor). This reflection is from the perspective of a recently graduated MD student who spent one month with an Indian pain management and palliative care team at the Institute Rotary Cancer Hospital (IRCH), All India Institute of Medical Sciences (AIIMS), New Delhi PMID:26962288

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

    PubMed

    Kashyap, Surbhi

    2016-01-01

    This article is a case reflection of a personal encounter on the palliative care treatment required after the removal of a complicated case of a primary extra-gonadal retro-peritoneal endodermal sinus tumor (yolk sac tumor). This reflection is from the perspective of a recently graduated MD student who spent one month with an Indian pain management and palliative care team at the Institute Rotary Cancer Hospital (IRCH), All India Institute of Medical Sciences (AIIMS), New Delhi. PMID:26962288

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

    ERIC Educational Resources Information Center

    Bailey, Maria; Doody, Owen; Lyons, Rosemary

    2016-01-01

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

  16. 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

  17. Palliative Home Care: A Designer’s Perspective

    PubMed Central

    Bhatnagar, Tigmanshu

    2015-01-01

    The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice. PMID:26009683

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

    PubMed

    Ackroyd, Rajeena

    2003-08-01

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

  19. 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

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

    PubMed

    Kwieci?ski, H

    2001-01-01

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

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

    PubMed

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

    2015-03-01

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

  5. MECC regional initiative in pediatric palliative care: Middle Eastern course on pain management.

    PubMed

    Silbermann, Michael; Al-Hadad, Salma; Ashraf, Shamvil; Hessissen, Laila; Madani, Abdellah; Noun, Peter; Khayat, Claudia; Al-Rimawi, Hala; Kebudi, Rejin; Yaniv, Isaac

    2012-03-01

    In all the major medical centers throughout the Middle East, there is a functioning pediatric hematology oncology department. In almost all countries, opioids such as morphine, oxycodone, and fentanyl are available. Pediatric palliative care services are still in their infancy and await further recognition and development. Unfortunately, there are still countries in the Middle East where children with cancer are diagnosed when the disease is already at stage III or IV, when the only option left is palliation. To decrease the incidence of late presentation, more effort is needed concerning public awareness, and concomitantly, an urgent need to develop hospital-based and community-based palliative and supportive care services. The initial step in this direction would involve more training of health care providers: Pediatricians, Pediatric Oncologists, Oncology Nurses, and Social Workers with updated pharmacological and nonpharmacological modalities of treatment. PMID:22357142

  6. Learning from each other: cross-cultural insights on palliative care in Indian and Australian regions.

    PubMed

    McGrath, Pam; Holewa, Hamish; Koilparampil, Thomas; Koshy, Cherian; George, Shobha

    2009-10-01

    This article presents the findings of a cross-cultural research project that explored similarities and differences between palliative care service provision in Kerala, India and South-East Queensland, Australia, to inform a process of mutual learning for service development. Three major points of difference that can inform this process of mutual learning were identified: 1) an understanding of the significance of honesty in information-giving to the patient, 2) recognition of the importance of palliative care specialists providing education to mainstream health professionals, and 3) appreciation of the need for palliative care to be cognizant of the socio-economic impact of dying-especially for families experiencing poverty-by embracing strategies for financial and material support. The findings highlight the effectiveness of a cross-cultural collaboration between health professionals and researchers in South-East Queensland, Australia and Kerala, India. PMID:20081722

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

    PubMed

    Molmenti, Ernesto P; Dunn, Geoffrey P

    2005-04-01

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

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

    PubMed

    Harrop, Emily; Edwards, Clare

    2013-12-01

    Specialist paediatric palliative care is a relatively new area of paediatrics, and the interface with other disciplines can occasionally pose challenges for referrers due to lack of information about the diverse services available. Although services vary on a regional basis, there are common principles which may be used to guide and support referrals. Children may be referred to palliative care services via a number of routes from community-based primary care to regional tertiary centres. Identifying those most likely to benefit from the finite resources available can be a challenge, and healthcare professional's negative attitudes to palliative care have been further identified as a potentially modifiable barrier. This article aims to clarify the role of specialist paediatric palliative care, identify who should be eligible for such care, describe the services available (including those from children's hospices) and provide a tool for assessing some of the most challenging referrals. Many of the documents referenced can be downloaded from the Together for Short Lives website, and in many cases, there is no charge. PMID:23975414

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

    PubMed Central

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

    2014-01-01

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

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

    PubMed

    Kydd, Angela; Sharp, Barbara

    2016-02-01

    The current focus in dementia care places emphasis on the potential of people to live well with the condition. Given the historical tendency to neglect the full rights and citizenship of people with dementia, such an emphasis gives hope and optimism that there is life after diagnosis. This paper seeks to explore the potential compromise of effective preparation for the complexities of advanced illness that may be presented by this consistently up-beat message. Dementia is a life limiting condition, currently without cure. Therefore, the appropriateness of palliative care may seem obvious. Yet, until relatively recently, palliative care was seen as an adjunct to oncology in the minds of professionals and public alike. However, there is a growing recognition that specialist palliative care has much to offer people with a range of long term conditions, including people with dementia. So, whilst 'living well' is an important message-especially following diagnosis-planning for advanced dementia and dying well is equally important. The aim of this paper is to highlight policy on the living well and the palliative care approach for people with dementia. A word limited narrative literature review was conducted to explore how policies have or have not informed the literature on both messages. The findings emphasise the need for a continuum approach to dementia care, with discussion on when, where, and how can palliative care be delivered for people with dementia. PMID:26586105

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

    PubMed Central

    Onyeka, Tonia C

    2011-01-01

    Everyone, young and old, male and female, rich and poor, should have access to excellent care during the course of a serious illness and at the end of life. Therefore, a denial of such care becomes an infringement of the individual's human rights. Because of the efforts of pioneers in this field of Medicine in Africa and beyond, both living and immortalized, we can now say that palliative care in the African context is affordable and achievable. In this article, some of the challenges faced in setting up and running a new palliative care practice in an emerging and developing economy are examined. PMID:21976853

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

    PubMed Central

    2010-01-01

    Background Palliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim of this study was to develop the first targets for public health initiatives to improve palliative care in Germany. Methods Based on the findings from pilot studies (qualitative interviews and surveys with different stakeholders in the health care system), we conducted a modified Delphi study with two rounds of questionnaires with experts in public health and palliative care. In the first round, the experts commented on the findings from the pilot studies. The answers were evaluated descriptively and with qualitative content analysis, resulting in the formulation of 25 targets. These were presented to the experts in the second Delphi round to assess each of them separately with regard to its importance and current implementation (7-point answer scales) and in relation to the other targets (defining the five most important of the 25 targets). Results Six most relevant targets for public health initiatives to improve palliative care in Germany were worked out: Supporting palliative care as a basic attitude for the care of people in the last phase of life; coordinating healthcare for people in the last phase of life; establishing cooperation among health professions and disciplines; establishing education in palliative care for all professional groups with contact to people in the last phase of life; reviewing the evidence of palliative care measures; offering support to family members who are caring for someone in the last phase of life. Conclusions To systematically develop palliative care, it makes sense to define fields of action with individual targets. For Germany, it can be recommended to give priority to the targets that were highlighted as the most relevant in this study. The next step will be to develop, implement and evaluate tangible measures to achieve these targets. PMID:20429901

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

    PubMed Central

    Kirby, Emma; Broom, Alex; Good, Phillip

    2014-01-01

    Objectives Nurses are generally present, and often influential, in supporting patient and family acceptance of medical futility and in assisting doctors in negotiating referral to palliative care. Yet the specificities of the nursing role and how nurses may contribute to timely and effective referrals is not well understood. This study aimed to systematically explore hospital-based nurses’ accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions. Design Qualitative study using semistructured interviews. Setting Two health services with public as well as private clinical environments in a major metropolitan area of Australia. Participants Hospital-based nurses (n=20) who regularly work with patients at the point of referral and in managing transitions to palliative care. Results Four significant themes emerged from thematic analysis. These include: (1) professional dynamics and the roles played by nurses in initiating the transition to palliative care; (2) the value of nurses’ informal interactions in timely and effective transitions; (3) the emerging challenge of managing task-oriented nursing versus intense emotional nursing work at the point of medical futility and (4) the emotional burden experienced by nurses within this clinical context. Nurses self-reported occupying critical albeit complex roles in the management of medical futility and the transition to palliative care. They reported experiencing significant emotional burden in balancing interpersonal and interprofessional relationships during this time. Conclusions The results suggest that nurses may be utilised in a more formalised and systematic fashion in the context of managing medical futility and the need to topicalise the transition, with the focus shifted away from medical referrals towards more team-based and patient-centred timely transitions. Further research focused on the experiences of doctors, allied health professionals, patients and families is required to provide a broader interdisciplinary understanding of futility and contributions to the negotiation of palliative care. PMID:25270859

  14. [Implementing palliative care for newborns in various care settings. Part 3 of "Palliative care in the neonatal period"].

    PubMed

    Btrmieux, P; Gold, F; Parat, S; Farnoux, C; Rajguru, M; Boithias, C; Mahieu-Caputo, D; Jouannic, J-M; Hubert, P; Simeoni, U

    2010-04-01

    Palliative care in newborns may take place in the delivery room and then continued either in maternity wards or in the neonatal unit. For babies developing a chronic condition, going home may be advantageous. The population concerned includes babies born with a severe intractable congenital malformation and certain extremely preterm newborn babies at the limits of viability. Care procedures as well as withholding and withdrawing treatments are reviewed. PMID:20206481

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

    PubMed

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

    2016-03-01

    Quality of care is a prominent discourse in modern health-care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse-patient-carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi-structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health-care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved. PMID:26189362

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

    PubMed

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

    2012-06-01

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

  17. Care of the Complex Chronically Ill Child by Generalist Pediatricians: Lessons Learned From Pediatric Palliative Care

    PubMed Central

    Walter, Jennifer K.; DeCamp, Lisa Ross; Warrier, Kavita S.; Murphy, Terrance P.; Keefer, Patricia M.

    2015-01-01

    BACKGROUND AND OBJECTIVE Parents of children with complex chronic conditions report fragmented care, unmet medical needs, and financial strain from health care costs. The aim of this study was to identify both prevalent themes discussed during pediatric palliative care consultation of patients with complex chronic conditions cared for by pediatric generalists and variation in consultation content by age and timing of consultation in disease course. METHODS Forty randomly selected initial inpatient or outpatient consultation notes authored by the pediatric palliative care team at an academic, tertiary care childrens hospital. Inclusion required that patients were primarily cared for by general pediatricians, pediatric hospitalists, or pediatric intensivists, instead of subspecialists. Qualitative analysis by 5 team members utilizing consensus-based findings was used to develop themes. Descriptive statistics were used to describe variations in themes across age and disease course. RESULTS Common themes included thorough review of patient baseline functioning, current symptoms, assessment of familys understanding of the prognosis of the patient, coordination of communication with other medical teams and outpatient health care services, consideration of caregiver resources and burdens, and offering a framework for decision-making. Variation in consult themes by age/disease course included more discussion of communication problems and symptom management when patients were at their baseline, but otherwise little variation was found. CONCLUSIONS Common themes covered in initial consultations correspond with documented unmet needs for chronically ill children. There was no significant variation in consultation themes by age/disease course, suggesting that generalists could broadly apply palliative care techniques to improve family-centered care. PMID:24340413

  18. Pediatric hospital care for children with life-threatening illness and the role of palliative care.

    PubMed

    Bogetz, Jori F; Ullrich, Christina K; Berry, Jay G

    2014-08-01

    Under increasing pressure to contain costs, hospitals are challenged to provide high-quality care to an increasingly complex group of children with life-threatening illness (LTI) that often worsen over time. Pediatric palliative care is an essential component of optimal hospital care delivery for these children and their families. This article describes (1) the current landscape of pediatric hospital care for children with LTI, (2) the connection between palliative care and hospital care for such children, and (3) the relationship between health care reform and palliative care for children with LTI. PMID:25084720

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

    PubMed Central

    2014-01-01

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

  20. Nutritional intervention and quality of life in palliative care patients.

    PubMed

    Fleming, Mick; Hollins Martin, Caroline J; Martin, Colin R

    Quality of life measures can be used by health professionals to assess effectiveness of nutritional interventions administered to palliative care patients. Stabilizing, maintaining and attempting to increase weight in palliative care patients through the support of oral feeding, and provision of artificial feeding, has been shown to mediate the metabolic and physical wasting effects of the disease process and improve general comfort. A quality of life instrument is a multi-dimensional questionnaire that health professionals can use to measure domains relating to physical, psychological and social aspects of living, and health and disease outcomes. There are three instruments specifically designed to assess quality of life in patients receiving palliative care. These are: The Palliative Care Quality of life Instrument, The Assessment of Quality of Life at the End of Life (AQEL), and The Spitzer Quality of Life Index (SQLI). General use quality of life measures are multifaceted; however, for use with palliative care patients, they have added dimensions of spirituality, existential issues (purpose and meaning of life), family members' perceptions of quality of care, symptom control and family support. Use of quality of life scales provides health professionals and organizations with an ideal measure for planning, targeting and evaluating health interventions. PMID:22068011

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

    PubMed

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

    2016-02-01

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

  2. Pain and symptom control in paediatric palliative care.

    PubMed

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

    1994-01-01

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

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

    PubMed Central

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

    2014-01-01

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

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

    PubMed

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

    2016-03-01

    In the last decades, palliative care has been more and more focused on the evaluation of patients' and families' satisfaction with care. However, the evaluation of customer satisfaction in palliative care presents a number of issues such as the presence of both patients and their families, the frail condition of the patients and the complexity of their needs, and the lack of standard quality indicators and appropriate measurement tools. In this manuscript, we critically review existing evidence and literature on the evaluation of satisfaction in the palliative care context. Moreover, we provide - as a practical example - the preliminary results of our experience in this setting with the development of a dedicated tool for the measurement of satisfaction. PMID:26837318

  5. Diet and Nutrition in Cancer Survivorship and Palliative Care

    PubMed Central

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

    2013-01-01

    The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health outcomes and perhaps even positively affect cancer recurrence and progression. In this regard, there has been a recent emphasis in the literature on nutrition and cancer as an important factor in both quality of life and in the pathophysiology of cancer. Hence, the primary purpose of this paper is to review the current data on diet and nutrition as it pertains to a wide range of cancer patients in the palliative care setting. PMID:24288570

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

    PubMed

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

    2016-03-01

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

  7. Stories and the longitudinal patient relationship: what can clinical ethics consultants learn from palliative care?

    PubMed

    Morrison, Wynne; Derrington, Sabrina F

    2012-01-01

    A case of conflict in pediatric end-of-life decision making is presented to compare the complementary roles of clinical ethics consultants and palliative care specialists. The progression of the case illustrates the differing structures, goals, and methods of the majority of such teams. The strengths of each of consultation are emphasized. Particularly in centers where palliative care services are not available, it can be important for careproviders and clinical ethics consultants to focus on alliance-building and a longitudinal relationship with patients and families. PMID:23256402

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

    PubMed

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

    2013-03-01

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

  9. 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 (20052012) for review articles published on the topics of palliative and hospiceend-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

  10. Palliative care in a multicultural society: perceptions of health care professionals.

    PubMed

    McNamara, B; Martin, K; Waddell, C; Yuen, K

    1997-09-01

    This study assesses the perceived competence of 191 Australian palliative care professionals in delivering crosscultural care. The relationship between the perceived competence levels of professionals and their experience and training is examined. Strategies to improve crosscultural palliative care, as suggested by palliative care providers, are also presented. Information about perceived competence and the kinds of difficulties encountered in crosscultural palliative care interactions form the basis of suggested guidelines for proposed education programmes. The results of this study suggest that specific education, rather than individual experience of crosscultural interactions, which may not always be positive, is needed to improve the competence of palliative care professionals. Education, therefore, is the key to the provision of culturally appropriate care to patients and their families from all cultural backgrounds. PMID:9472592

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

    PubMed Central

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

    2015-01-01

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

  12. [The role of the mobile palliative care team nurse].

    PubMed

    Chrtien, Sophie

    2015-11-01

    The mobile palliative care and support team nurse works in different departments within the hospital. The clinical situation of a patient enables the team to identify in what ways she is declining and thereby participate in the care management in order to favour the patient's return home. PMID:26567068

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

    PubMed

    Nakanishi, Miharu; Miyamoto, Yuki

    2016-02-11

    This study examined factors contributing to the knowledge and attitudes of nursing home staff regarding palliative care for advanced dementia in Japan. A cross-sectional survey of 275 nurses and other care workers from 74 long-term care facilities was conducted across three prefectures in August 2014. The Japanese versions of the Questionnaire on Palliative Care for Advanced Dementia (qPAD) and Frommelt Attitudes Toward Care of the Dying scale, Form B (FATCOD-B-J) were used. Greater knowledge was exhibited among nursing home staff in facilities that established a manual for end-of-life care. Higher levels of positive attitudes were observed among nursing home staff in facilities that had established a manual and those in facilities with a physician's written opinions on end-of-life care. An organisational effort should be explored to establish end-of-life care policies among nursing home staff for advanced dementia. PMID:26878406

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

    MedlinePLUS

    ... order to get palliative care. The palliative care team and your health care provider work together. Most clinicians appreciate the extra time and ... or any medications, talk to your palliative care team. They can tell you about how various medications work, what their side effects are and how to ...

  15. Cultural and religious considerations in pediatric palliative care

    PubMed Central

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

    2012-01-01

    Objective A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Method Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Results Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. Significance of results The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care. PMID:22617619

  16. 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

  17. 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

  18. Narrative accounts of volunteers in palliative care settings.

    PubMed

    Guirguis-Younger, Manal; Grafanaki, Soti

    2008-01-01

    The long and evolving tradition of palliative care has always had a strong volunteer dimension. The difficult nature of palliative care invites questions around why volunteers choose this particular line of contribution. To expand our knowledge of the elements that create meaning and capture the essence of volunteer experience, we asked volunteers to share the rewards and the challenges of their work and its personal meaning. Significant themes emerged around what volunteers considered the most valuable aspects of their experience. Volunteers identified freedom of choice and the ability to use their natural gifts as an important condition for satisfaction. In addition, they perceived emotional resilience and personal hardiness as important dimensions of their suitability for working in palliative care. Finally, volunteers felt that their approach must be one of a balanced perspective, with an understanding of life and death as part of the human condition. PMID:18198360

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

    PubMed

    Morgan, Darla

    2009-01-01

    Pediatric palliative nursing care, both stressful and rewarding, requires coping skills, confidence, and other attributes for successful patient care and nursing practice. Through a thorough literature review, clinical workshops, direct observations in pediatric palliative care settings, and personal nursing experience in the neonatal intensive care, pediatric intensive care, and oncology wards, this author confirmed the necessity for studies to clarify the needs of dying pediatric patients and their families, as well as the needs of nurses who provide their care. This article briefly reviews the history and current status of pediatric palliative care, describes the experiences of nurses caring for dying children, explores the impact of providing palliative care on the hospital staff, and seeks to discover possible interventions by the advanced practice nurse to influence more positive patient care and nursing staff job satisfaction and retention. PMID:19472671

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

    PubMed

    Dawson, Katherine A

    2008-01-01

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

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

    MedlinePLUS

    ... medlineplus/news/fullstory_156608.html Palliative Care Cuts Costs for Cancer Patients With Other Health Problems Relieving ... 8, 2016 (HealthDay News) -- Palliative care reduces hospital costs for incurable cancer patients who have other serious ...

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

    PubMed

    Dening, Karen Harrison

    2016-02-01

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

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

    PubMed

    Engelman, Suzanne R

    2013-01-01

    A growing body of research and clinical reports support the benefits of utilizing animal-assisted therapy (AAT) as a complementary, transdisciplinary treatment intervention in medical settings. However, fewer articles are found demonstrating AAT's use in palliative care settings. This article is a study of the effects of AAT in palliative care situations, presenting one anecdotal clinical vignette. In this way, the efficacy of this technique in decreasing patient pain, thereby increasing patient quality of life, and lowering staff stress levels may be illustrated. PMID:23977780

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

    PubMed

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

    2015-11-01

    In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of costs borne by different stakeholders. PMID:25443659

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

    PubMed Central

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

    2011-01-01

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

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

    PubMed

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

    2016-02-01

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

  7. Reality of evidence-based practice in palliative care.

    PubMed

    Visser, Claire; Hadley, Gina; Wee, Bee

    2015-09-01

    There has been a paradigm shift in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically significant benefits may be marginal and may not be related to clinical meaningfulness. The typical treatment vs. placebo comparison necessitated by 'gold standard' randomised controlled trials (RCTs) is not necessarily applicable. The complex multimorbidity of end of life care involves considerations of the patient's physical, psychological, social and spiritual needs. In addition, the field of palliative care covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be difficult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. This review uses examples of the management of cancer-related fatigue and death rattle (noisy breathing) to demonstrate the current state of EBM in palliative care. The future of EBM in palliative care needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity and size conducted by collaborative research networks using a 'mixed methods approach' are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes. PMID:26487964

  8. Reality of evidence-based practice in palliative care

    PubMed Central

    Visser, Claire; Hadley, Gina; Wee, Bee

    2015-01-01

    There has been a paradigm shift in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically significant benefits may be marginal and may not be related to clinical meaningfulness. The typical treatment vs. placebo comparison necessitated by gold standard randomised controlled trials (RCTs) is not necessarily applicable. The complex multimorbidity of end of life care involves considerations of the patients physical, psychological, social and spiritual needs. In addition, the field of palliative care covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be difficult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. This review uses examples of the management of cancer-related fatigue and death rattle (noisy breathing) to demonstrate the current state of EBM in palliative care. The future of EBM in palliative care needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity and size conducted by collaborative research networks using a mixed methods approach are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes. PMID:26487964

  9. 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

  10. Guidelines for a palliative approach for aged care in the community setting: A suite of resources.

    PubMed

    Toye, Christine; Blackwell, Scott; Maher, Sean; Currow, David C; Holloway, Kristi; Tieman, Jennifer; Hegarty, Meg

    2012-01-01

    In Australia, many people ageing in their own homes are becoming increasingly frail and unwell, approaching the end of life. A palliative approach, which adheres to palliative care principles, is often appropriate. These principles provide a framework for proactive and holistic care in which quality of life and of dying is prioritised, as is support for families. A palliative approach can be delivered by the general practitioner working with the community aged care team, in collaboration with family carers. Support from specialist palliative care services is available if necessary.The Guidelines for a Palliative Approach for Aged Care in the Community Setting were published by the Australian Government Department of Health and Ageing to inform practice in this area. There are three resource documents. The main document provides practical evidence based guidelines, good practice points, tools, and links to resources. This document is written for general practitioners, nurses, social workers, therapists, pastoral care workers, and other health professionals and responded to needs identified during national consultation. Evidence based guidelines were underpinned by systematic reviews of the research literature. Good practice points were developed from literature reviews and expert opinion. Two 'plain English' booklets were developed in a process involving consumer consultation; one is for older people and their families, the other for care workers.The resources are intended to facilitate home care that acknowledges and plans for the client's deteriorating functional trajectory and inevitable death. At a time when hospitals and residential aged care facilities are under enormous pressure as the population ages, such a planned approach makes sense for the health system as a whole. The approach also makes sense for older people who wish to die in their own homes. Family needs are recognised and addressed. Unnecessary hospitalisations or residential placements and clinically futile interventions are also minimised. PMID:23289045

  11. 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

  12. Promoting palliative care worldwide through international nursing education.

    PubMed

    Malloy, Pam; Paice, Judith; Coyle, Nessa; Coyne, Patrick; Smith, Thomas; Ferrell, Betty

    2014-10-01

    Many challenges exist when providing international education to those who care for people at the end of life. Though issues related to culture and language may vary, the one commonality that crosses all nations is that its people die. In general, societies seek to provide the best care they are trained to give. Many have few resources to provide this care well. Traditions of the past influence norms and dictate policies and procedures of the present. Since its inception in 2000, the End-of-Life Nursing Education Consortium Project has provided palliative care education to nurses and other members of the interdisciplinary team in six of the seven continents. This article describes the efforts of this project to improve education around the globe, with the goal of providing excellent, compassionate palliative care, irrespective of location, financial status, political views, religion, race, and/or ethnicity. PMID:24595165

  13. Home-based palliative care for adult cancer patients in Ibadana 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 123 times per person. Days on programme ranged from 91207 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

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

    PubMed Central

    Jethwa, Ketan Dipak; Onalaja, Oluwademilade

    2015-01-01

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

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

    PubMed

    Espinar Cid, Victoria

    2012-01-01

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

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

    ERIC Educational Resources Information Center

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

    2015-01-01

    Background: Palliative care (PC) is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems like physical, psychosocial and…

  17. Networking of Palliative Care at the Corporate Level

    PubMed Central

    Rao, Kishore; Simha, Nagesh

    2011-01-01

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

  18. When Hospice Fails: The Limits of Palliative Care.

    ERIC Educational Resources Information Center

    Logue, Barbara J.

    1994-01-01

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

  19. When Hospice Fails: The Limits of Palliative Care.

    ERIC Educational Resources Information Center

    Logue, Barbara J.

    1994-01-01

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

  20. [The perception of time in a palliative care unit].

    PubMed

    Tocheport, Pascale; Tambouras, Valrie; Azemard, Alain

    2012-10-01

    Time is perceived differently depending on whether it is experienced by the patient, his or her family, friends, volunteer helpers or caregivers. It also differs according to the institute. In palliative care, it is still a time of life, accompanied to its end. PMID:23167130

  1. 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

  2. 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…

  3. Assessment of the need for palliative care for children in South Africa.

    PubMed

    Connor, Stephen; Sisimayi, Chenjari; Downing, Julia; King, Evelyn; Lim Ah Ken, Patricia; Yates, Rachel; Marston, Joan

    2014-03-01

    UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries' capacities to deliver children's palliative care (CPC). This report concerns the findings from South Africa. The study adopted a cross-sectional mixed-methods approach using both quantitative and qualitative data obtained from primary and secondary sources. CPC need was estimated using prevalence and mortality statistics. The response to the need and existing gaps were analysed using data obtained from a literature review, interviews with key persons, and survey data from service providers.The findings show very limited CPC service coverage for children in the public sector. In addition, services are mainly localised, with minimal reach. Less than 5% of the children needing care in South Africa are receiving it, with those receiving it being closer to the end of life. Barriers to the delivery of CPC include fear of opioid use, lack of education on CPC, lack of integration into the primary care system, lack of policies on CPC, and lack of community and health professional awareness of CPC needs and services. Estimating the need for CPC is a critical step in meeting the needs of children with life-threatening conditions and provides a sound platform to advocate for closure of the unacceptably wide gaps in coverage. PMID:24675539

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

    PubMed Central

    2014-01-01

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

  5. Psychiatric Issues in Palliative Care: Assessing Mental Capacity

    PubMed Central

    Udo, Itoro; Mohammed, Zeid; Gash, Amanda

    2013-01-01

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

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

    PubMed

    Fuhrman, M Patricia; Herrmann, Virginia M

    2006-04-01

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

  7. 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. Survey of Consumer Informatics for Palliation and Hospice Care

    PubMed Central

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

    2012-01-01

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

  9. [Pain and palliative care. Comments by a witness].

    PubMed

    Gomas, Jean-Marie

    2006-12-01

    Physical pain is well analysed by medical science, but still often neglected by the practicians. It is entangled with moral suffering at the end of life. The distinction between these two fundamental experiences is difficult but necessary for the care of patients. The concept of palliative care is far from being integrated by health professionals as well as by everybody, because it questions our finitude, the signification of life and human solidarity. PMID:17194645

  10. Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences

    PubMed Central

    Davies, Nathan; Maio, Laura; Vedavanam, Krish; Manthorpe, Jill; Vernooij-Dassen, Myrra; Iliffe, Steve

    2014-01-01

    Approaches to palliative care that were originally developed for people with cancer are now being adopted for people with dementia, as a response to many reports of poor-quality care for people with dementia at the end of life. This study explored perceived barriers to the delivery of high-quality palliative care for people with dementia using semi-structured interviews. Recordings were transcribed verbatim and analysed using thematic analysis with an inductive approach and a coding strategy. To improve the trustworthiness of the analysis, independent reading and coding of the transcripts were undertaken, followed by discussions among the four researchers to reach agreement and consensus of the themes. Two group interviews (n=7 and n=6), 16 individual interviews and five interviews of pairs of professionals were conducted in 2011/2012 with participants from backgrounds in palliative care, dementia services, palliative care research and policy making. Four themes were identified as barriers to providing high-quality palliative care for people with dementia: (i) ambivalence towards the systematisation of palliative care; (ii) disconnection between services; (iii) different assumptions about training needs; and (iv) negotiation of risk. Understanding these barriers to providing high-quality palliative care for people with dementia could help in the development of a dementia-specific palliative care pathway. PMID:24372976

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

    PubMed

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

    2001-01-01

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

  12. 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…

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

    PubMed Central

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

    2014-01-01

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

  14. Understanding Models of Palliative Care Delivery in Sub-Saharan Africa: Learning From Programs in Kenya and Malawi.

    PubMed

    Downing, Julia; Grant, Liz; Leng, Mhoira; Namukwaya, Elizabeth

    2015-09-01

    The need for palliative care has never been greater. From being significantly present in only five African countries in 2004, palliative care is now delivered in nearly 50% of African countries; however, less than 5% of people in need receive it. To scale-up palliative care, we need greater knowledge about how different models of palliative care work within different health systems. A case study evaluation was undertaken in Kenya and Malawi to define the models used, contextualize them, and identify challenges, best practices, and transferable lessons for scale-up. Visits were made to seven sites and, using an audit tool, data were collected from program staff, hospital staff, and local stakeholders, and care observed as appropriate. Three models of palliative care service delivery were identified, which supports the existing literature, that is, specialist, district hospital level, and community level. However, in looking further, findings show that the major determinants for each model were a set of philosophical questions and assumptions underpinning each and influencing staff and patient decision-making, planning, and allocation of resources. The health system structure and the beliefs about palliative care determined, and were determined most by, referrals, the patient journey, the centeredness of the model, and role definition and training. The models are also closely associated with the physical setting of services. Understanding how the services have developed because of, and indeed despite the geographical setting and the system level, provides us with a different set of indicators of program structure incorporated into the three models. The analysis of models provides pointers to future planning for palliative care. PMID:25936938

  15. Palliative Care and Symptom Management in Older Patients with Cancer.

    PubMed

    Alexander, Koshy; Goldberg, Jessica; Korc-Grodzicki, Beatriz

    2016-02-01

    Older patients with cancer are best served by a multidisciplinary approach with palliative care (PC) playing an integral role. PC focuses on symptom control irrespective of its cause and should not be associated only with terminal care. It provides an additional layer of support in the care of patients with cancer with an emphasis on quality of life. This article discusses the evaluation and management of pain and other common nonpain symptoms that occur in elderly patients with cancer, as well as end-of-life care. PMID:26614860

  16. A guide to wound managment in palliative care.

    PubMed

    Naylor, Wayne A

    2005-11-01

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

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

    PubMed

    Omilion-Hodges, Leah M; Swords, Nathan M

    2016-01-01

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

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

    PubMed

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

    2015-05-01

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

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

    PubMed Central

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

    2005-01-01

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

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

    PubMed Central

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

    2012-01-01

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

  1. Reflecting on patient and carer biographies in palliative care education.

    PubMed

    Read, Sue; Spall, Bob

    2005-05-01

    This paper describes an evaluation study which explored the impact of the introduction of a selection of stories and biographical literature within a post-registration Palliative Care Diploma (nursing) course. The aim was to explore how this literature could help participants to understand more about palliative care. Participants were asked to reflect, for example, on the kind of language used, why the author wrote the book and the most important message conveyed. The rationale for using this approach is explained, the learning process described and the impact of using this literature evaluated. Participants found this to be an interesting exercise, which aided reflection on the personal meanings of serious illness. Such insights could clearly have implications for reflective practice in palliative care. The paper concludes by offering recommendations for using this kind of literature in a similar learning context in the future. It also considers possible ways of formally evaluating this approach with different health care groups and identifies potential research methods for doing this. PMID:19038192

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

    PubMed

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

    2007-03-01

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

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

    PubMed

    Jordhy, 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

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

    PubMed Central

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

    2015-01-01

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

  5. Dealing sensitively with sexuality in a palliative care context.

    PubMed

    Woodhouse, Jan; Baldwin, Moyra A

    2008-01-01

    Sexuality is integral to a person's identity and is encompassed in holistic palliative care. Current directives emphasize psychosocial support that is sensitive to a variety of issues, including sexuality, and offer community nurses the mandate to facilitate expressing sexuality. Nurses fail to address sexuality for a variety of reasons. Appreciating patients' individuality and avoiding making assumptions are some of the requirements to enabling expression of sexuality. Nurses need wisdom and determination to discuss such issues, and it is important that they recognize opportunities and cues as they arise. This article provides an examination of the issues surrounding sexuality outlining an approach that captures' constant attention to details. This guides the 'what', 'how' and 'why' sexuality in palliative care can be addressed. Ethics and safety aspects are briefly discussed and implications for practice suggested. Educating staff and focused education for the patient can positively influence sexuality and individuals' quality of life. PMID:18399367

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

    PubMed

    Larsen, Ann-Claire

    2012-12-01

    Community palliative care nurses in Perth have joined the throng of healthcare workers relying on personal digital assistants (PDAs) to store, access and send client information in 'real time'. This paper is guided by Heidegger's approach to technologies and Habermas' insights into the role of law in administering social welfare programs to reveal how new ethical and legal understandings regarding patient information add to nursing's professional responsibilities. This qualitative research interprets data from interviews with twenty community palliative care nurses about clients' legal rights to informational privacy and confidentiality. It explores nurses' views of their nursing responsibilities regarding clients' legal rights, liability issues, bureaucratic monitoring and enforcement procedures. It concludes that nurses and clients are construed as legal subjects entrenched in legal relations that have magnified since these nurses began using PDAs in 2005/2006. PMID:23134278

  7. 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

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

    PubMed Central

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

    2013-01-01

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

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

    PubMed Central

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

    2013-01-01

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

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

    PubMed Central

    Mummudi, Naveen

    2014-01-01

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

  11. [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

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

    Cancer.gov

    Supportive and palliative care research includes studies to prevent or treat the acute and chronic symptoms and morbidities related to cancer and its treatment, and to examine the effects of cancer and its treatment on quality of life and psychosocial issues and treatment strategies at the end of life. Active Projects can range from caregiver issues to geriatrics, physical functioning to cognitive dysfunction.  | Examining symptoms and morbidities related to cancer, its treatment, quality of life and end of life.

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

    Cancer.gov

    Supportive and palliative care research includes studies to prevent or treat the acute and chronic symptoms and morbidities related to cancer and its treatment, and to examine the effects of cancer and its treatment on quality of life and psychosocial issues and treatment strategies at the end of life. Active Projects can range from caregiver issues to geriatrics, physical functioning to cognitive dysfunction. | Examining symptoms and morbidities related to cancer, its treatment, quality of life and end of life.

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

    PubMed Central

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

    2011-01-01

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

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

    PubMed

    Swetz, Keith M; Mansel, J Keith

    2013-11-01

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

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

    PubMed

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

    2001-07-01

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

  17. Is Palliative Care Right for You?

    MedlinePLUS

    ... and values to your medical care Understanding the pros and cons (benefits/burdens) of treatments (e.g., dialysis, additional cancer treatments, surgery, etc.) Yes No 5. Do you, or someone close to you, need ...

  18. 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

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

    PubMed

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

    2016-05-01

    In the majority of U.S. hospitals, inpatient medicine teams make palliative care decisions in the absence of a formalized palliative system. Using a grounded theory approach, interviews with inpatient team members were systematically analyzed to uncover how participants conceptualize palliative care and how they regard the communicative structures that underlie its delivery. During analysis, Weick's model of organizing emerged as a framework that fit the data. The 39 participant inpatient team members discussed palliative care as primarily a communicative process. Themes describing the meaning of palliative care emerged around the concepts of receiver of care, timeline of care, and location of care. The emerging model included four stages in the communicative processes of inpatient palliative care: (a) interpret the need, (b) initiate the conversation, (c) integrate the processes, and (d) identify what works. In contrast to stable, focused palliative care teams or hospice care teams, which have prescribed patient populations and processes, the inpatient medicine team faces the equivocality of providing palliative care within a broader practice. This research offers a four-phase model to show how these inpatient teams communicate within this context. Implications for the provision of palliative care are discussed. PMID:26431077

  20. 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; Garca-Pea, Francisco; Fernndez-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

  1. Teaching Palliative Care in the Intensive Care Unit: How to Break the News

    PubMed Central

    Seoane, Leonardo; Bourgeois, Deborah A.; Blais, Christopher M.; Rome, Robin B.; Luminais, Hillary H.; Taylor, David E.

    2012-01-01

    Background Palliative care education is often lacking in graduate medical education curricula. Studies show that many physicians are uncomfortable discussing end-of-life issues with patients and providing palliative care to dying patients and their families. We used a case-based approach to improve resident confidence in delivering bad news, discussing poor prognoses, explaining the dying process, and providing palliative care in the intensive care unit. Methods The medical intensive care unit (MICU) curriculum involved a 3-pronged approach, including role modeling by the attending physician and palliative care team, tutorials, and a case-based debriefing at the end of each month-long rotation. Case-based debriefing consisted of discussions by the house officers of cases they encountered during the MICU rotation. Sessions were moderated by a staff physician trained in palliative care and a palliative care advanced practice nurse. Open-ended questions stimulated the residents' reflection on their decisions and guided the discussion pertinent to palliative care. Using a survey instrument with a 4-point Likert scale, house officers assessed themselves before and after the rotation, rating their confidence in 9 areas of palliative care. Paired t tests were used to compare the cohort's scores before and after the rotation. Results A total of 214 house officers completed prerotation and postrotation surveys from April 2007 to September 2011. After completing the course, house officers demonstrated statistically significant improvement in confidence with conducting family conferences (mean 2.6 before vs 3.1 after [P<0.001]), delivering bad news (mean 3.1 before vs 3.5 after [P<0.001]), discussing do not resuscitate orders (3.1 before vs 3.6 after [P<0.001]), discussing comfort care (mean 2.8 before vs 3.4 after [P<0.001]), discussing withdrawal of life-sustaining treatment (mean 2.6 before vs 3.2 after [P<0.001]), managing pain (mean 3.0 before vs 3.5 after [P<0.001]), managing terminal symptoms (mean 2.8 before vs 3.4 after [P<0.001]), assessing decision-making capacity (mean 2.8 before vs 3.4 after [P<0.001]), and discussing advance directives (mean 2.8 before vs 3.4 after [P<0.001]). Conclusion Using a multidisciplinary team to teach a structured curriculum that includes a case-based debriefing improves house officer confidence in discussing end-of-life care and providing palliative care to patients in the intensive care setting. PMID:23267256

  2. [Quality of life in palliative care--a comparison of hospital and home care].

    PubMed

    Jocham, Hubert R

    2006-06-01

    The aim of palliative care for seriously ill and dying patients suffering from oncological diseases is to obtain or enhance the quality of their lifes. It will become more and more necessary to evaluate and record the efficiency of different kinds of medical care with reliable and validated instruments. Professional home care will gain in importance for various political and economic reasons. The central question asked of palliative care will be how outpatient and inpatient care affects quality of life and if differences can be detected between both kinds of care. A representative group of 121 patients was chosen from a group of 250 terminally ill cancer patients who were either in ambulant or inpatient palliative care (outpatients n = 57, inpatients n = 64). Within the first 24 hours after either admission into the palliative sector of a hospital or first contact with the ambulant "Palliative Home Care Team" at home the patient's quality of life was estimated. After one week another estimation followed. The questionnaire EORTC-QLQ-C30, developed by the European Organisation for Research and Treatment of Cancer and translated into German, was used for this. Both groups of patients were homogeneous in their demographic parameters. In both groups improvements in nearly every dimension of quality of life were achieved between the first and the second assessment. The dimensions of symptom control (pain, fatigue, vomiting, and breathlessness) improved most distinctively in the outpatient care group. The German EORTC-QLQ-C30 turned out to be a reliable evaluation instrument for measuring patients' quality of life in out-patient or inpatient palliative care. Ambulant care always has to be considered as an alternative to inpatient care without leading to any quality deficits. PMID:16826966

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

    PubMed

    Larson, Anne M

    2015-05-01

    Liver disease results in over four million physician visits and over 750,000 hospitalizations per year in the USA. Those with chronic liver disease frequently progress to cirrhosis, end-stage liver disease (ESLD), and death. Patients with ESLD experience numerous complications, including muscle cramps, confusion (hepatic encephalopathy), protein calorie malnutrition, muscle wasting, fluid overload (ascites, edema), bleeding (esophagogastric variceal hemorrhage), infection (spontaneous bacterial peritonitis), fatigue, anxiety, and depression. Despite significant improvements in palliation of these complications, patients still suffer reduced quality of life and must confront the fact that their disease will often inexorably progress to death. Liver transplantation is a valid option in this setting, increasing the duration of survival and palliating many of the symptoms. However, many patients die waiting for an organ or are not candidates for transplantation due to comorbid illness. Others receive a transplant but succumb to complications of the transplant itself. Patients and families must struggle with simultaneously hoping for a cure while facing a life-threatening illness. Ideally, the combination of palliative care with life-sustaining therapy can maximize the patients' quality and quantity of life. If it becomes clear that life-sustaining therapy is no longer an option, these patients are then already in a system to help them with end-of-life care. PMID:25855211

  4. National Hospice and Palliative Care Organization

    MedlinePLUS

    ... Set (NDS) Survey of Team Attitudes and Relationships (STAR) Quality Reporting Staffing Guidelines QAPI Resources Quality Updates ... hours ago. NHPCO News Dementia & Alzheimer’s Care, The Black Hole in Our Society t.co/eDzJ3aQPSL via @ ...

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

    PubMed

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

    2003-06-01

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

  6. [Problems and potential solutions of regional palliative care: a trial of the multiregional and multidisciplinary conference in the OPTIM study].

    PubMed

    Yamagishi, Akemi; Morita, Tatsuya; Komura, Kazue; Sueda, Chie; Shirahige, Yutaka; Kinoshita, Hiroya; Akizuki, Nobuya; Suzuki, Satoshi; Kato, Masashi; Eguchi, Kenji

    2011-11-01

    Quality palliative care is required at the community level, and interaction among multidisciplinary practitioners from various regions might be useful for improving community palliative care. The aims of the present study are: 1)to evaluate the participant's-perception of the usefulness of the interactive conference of multidisciplinary multiregional healthcare practitioners, and 2)to clarify the areas needing to be improved in community palliative care, raised in the conference. A total of 336 multidisciplinary practitioners from 4 areas of Japan participated in the conference. Overall, more than 80% of the participants evaluated the conference as very useful or useful; more than half reported that the conference was very useful or useful to obtain a concrete solution for the obstacles and to utilize the lessons though the conference as a means to improve quality of care in their own community. The identified areas needing improvement are: 1)developing an interactive networking among healthcare practitioners and/or organizations in the community; 2)developing a system of high quality, easily-available specialized palliative care service; 3)improving the knowledge and perception of medical professionals concerning palliative care and home care; 4)developing a collaborative care system between hospitals and community healthcare practitioners and/or organizations; 5)developing a collaborative care system among community healthcare practitioners and/or organizations; 6)optimizing existing resources available in the community; 7)improving the perception of patients and the general public about palliative care, home care, and cancer; and 8)to reevaluate the regulations, laws, healthcare system, and financial or human resources at the social level. PMID:22083205

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

    PubMed

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

    2010-01-01

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

  8. Palliative Care for Patients with Malignancy and End-Stage Renal Failure on Peritoneal Dialysis

    PubMed Central

    Jing, Lv; Wu-Jun, Xue; Feng, Tan

    2014-01-01

    Background: Many patients on peritoneal dialysis experience a poor quality of life because of a high burden of comorbid conditions. Dialysists must pay more attention to reducing a patient's pain and suffering, both physical and psychological and improve the quality of life for the patients as much as possible. A consensus regarding eligibility for palliative care and the delivery of these inventions does not currently exist. Objective: The present study aimed to describe the implementation of palliative care for end-stage renal failure patients on peritoneal dialysis. Design: A report on three cases. Materials and Methods: This study included three outpatients on peritoneal dialysis who received palliative care and died between January 2008 and June 2010. Measurements: The patients' comorbidities, nutritional status, and functional status were evaluated using the Charlson comorbidity score, subjective global assessment, and Karnofsky Performance Score index, respectively. The Hamilton depression and Hamilton anxiety scales were also employed. The patients' clinical manifestations and treatments were reviewed. Results: Each patient displayed 11-16 symptoms. The Charlson comorbidity scores were from 11 to 13, the subjective global assessment indicated that two patients were class assigned to C and one to class B, and the mean Karnofsky index was <40. Among these patients, all experienced depression and two experienced anxiety, Low doses of hypertonic glucose solutions, skin care, psychological services, and tranquillizers were intermittently used to alleviate symptoms, after making the decision to terminate dialysis. The patients died 5 days to 2 months after dialysis withdrawal. Conclusion: The considerable burden associated with comorbid conditions, malnutrition, poor functional status, and serious psychological problems are predictors of poor patient prognoses. Withdrawal of dialysis, palliative care, and psychological interventions can reduce patient distress and improve the quality of life before death, with the care provided. PMID:25125871

  9. Communications by professionals in palliative care.

    PubMed

    Schapira, Lidia

    2015-05-01

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

  10. Dignity and palliative care in dementia.

    PubMed

    Holmerov, I; Juraskov, B; Kalvach, Z; Rohanov, E; Rokosov, M; Vankov, H

    2007-01-01

    Care for patients with dementia poses multiple challenges to the caretaker, including issues concerning maintaining patient dignity. In this paper, we discuss dignity in the context of patient autonomy, self-respect and appreciation, and explore issues that relate to dignity of patients in dementia care. As patients become incapacitated by the disease, it becomes the caretaker's responsibility to assure that the patient continues to live with dignity. The uniform manifestation of dementia symptoms across individuals allows for implementation of patient-friendly activities to address their special needs and allow them to express the remaining autonomy. In advanced dementia, a beneficial long-term care outcome becomes secondary and should give way to strategies to maintain patient comfort and dignity. Although it may be challenging to stress dignity in a patient with advanced dementia, where multiple serious health problems are likely to co-exist, it remains important to realize that dignity can be, should be and must be supported, maintained and, in some situations, regained. PMID:17985065

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

    PubMed

    Cox, Christopher E; Curtis, J Randall

    2016-02-01

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

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

    PubMed Central

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

    2006-01-01

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

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

    PubMed

    Lohman, Diederik; Amon, Joseph

    2015-01-01

    Palliative care has been defined as care that is person-centered and attentive to physical symptoms and psychological, social, and existential distress in patients with severe or life-threatening illness. The identification of access to palliative care and pain treatment as a human rights issue first emerged among palliative care advocates, physicians, and lawyers in the 1990s, with a basis in the right to health and the right to be free from cruel, inhuman, and degrading treatment. Using a case study approach, we evaluate the results of a human rights-based advocacy approach on access to pain medicine and palliative care in India, Kenya, and Ukraine. In each country, human rights advocacy helped raise awareness of the issue, identify structural barriers to care, define government obligations, and contribute to the reform of laws, policies, and practices impeding the availability of palliative care services. In addition, advocacy efforts stimulated civil society engagement and high-level political leadership that fostered the implementation of human rights-based palliative care programs. Globally, access to palliative care was increasingly recognized by human rights bodies and within global health and drug policy organizations as a government obligation central to the right to health. PMID:26766856

  14. 77 FR 76053 - Proposed Collection; Comment Request; Pediatric Palliative Care Campaign Pilot Survey

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-12-26

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

  15. 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

  16. 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…

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

    PubMed

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

    2010-03-01

    Nearly half of Americans who die in hospitals spend time in the intensive care unit (ICU) in the last 3 days of life. Minority patients who die in the ICU are less likely to formalize advance directives and surviving family members report lower satisfaction with the provision of information and sensitivity to their cultural traditions at the end-of-life. This is a descriptive report of a convenience sample of 157 consecutive patients served by a palliative care team which was integrated into the operations of an ICU at Montefiore Medical Center in the Bronx, New York, from August 2005 until August 2007. The team included an advance practice nurse (APN) and social worker. A separate case-control study was conducted comparing the length of hospital stay for persons who died in the ICU during the final 6 months of the project, prior to and post-palliative care consultation for 22 patients at the hospital campus where the project team was located versus 24 patients at the other campus. Pharmaco-economic data were evaluated for 22 persons who died with and 43 who died without a palliative care consultation at the intervention campus ICU to evaluate whether the project intervention was associated with an increase in the use of pain medications or alterations in the use of potentially non-beneficial life-prolonging treatments in persons dying in the ICU. Data was abstracted from the medical record with a standardized chart abstraction instrument by an unblinded research assistant. Interviews were conducted with a sample of family members and ICU nurses rating the quality of end-of-life care in the ICU with the Quality of Dying and Death in the ICU instrument (ICUQODD), and a family focus group was also conducted. Forty percent of patients were Caucasian, 35% were African American or Afro-Caribbean, 22% Hispanic and 3% were Asian or other. Exploration of the patients' and families' needs identified significant spiritual needs in 62.4% of cases. Education on the death process was provided to 85% of families by the project team. Twenty-nine percent of patients were disconnected from mechanical ventilators following consultation with the Palliative Care Service (PCS), 15.9% of patients discontinued the use of inotropic support, 15.3% stopped artificial nutrition, 6.4% stopped dialysis and 2.5% discontinued artificial hydration. Recommendations on pain management were made for 51% of the project's patients and symptom management for 52% of patients. The project was associated with an increase in the rate of the formalization of advance directives. Thirty-three percent of the patients who received PCS consultations had 'do not resuscitate' orders in place prior to consultation and 83.4% had 'do not resuscitate' orders after the intervention. The project team referred 80 (51%) of the project patients to hospice and 55 (35%) patients were enrolled on hospice, primarily at the medical center. The mean time from admission to palliative care consultation at the project site was 2.8 days versus 15.5 days at the other campus (p = 0.0184). Median survival times from admission to the medical center were not significantly different when stratified by palliative care consultation status: 12 days for the control group (95% CI 8-18) and 13.5 days for the intervention group (95% CI 8-20). Median charges for the use of opioid medications were higher (p = 0.01) for the intervention group but lower for use of laboratory (p = 0.004) and radiology tests (p = 0.027). We conclude that the integration of palliative care experts into the operation of critical care units is of benefit to patients, families and critical care clinicians. Preliminary evidence suggest that such models may be associated with improved quality of life, higher rates of formalization of advance directives and utilization of hospices, as well as lower use of certain non-beneficial life-prolonging treatments for critically ill patients who are at the end of life. PMID:19825893

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

    PubMed

    Casaas i Comabella, Carolina; Wanat, Marta

    2015-06-01

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

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

    PubMed Central

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

    2015-01-01

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

  20. Palliative Care teaching in Germany concepts and future developments

    PubMed Central

    Ilse, B.; Hildebrandt, J.; Posselt, J.; Laske, A.; Dietz, I.; Borasio, G. D.; Kopf, A.; Nauck, F.; Elsner, F.; Wedding, U.; Alt-Epping, Bernd

    2012-01-01

    Background: Following recent modifications of the Medical Licensure Act (ApprO) in the year 2009, palliative care was introduced as a compulsory 13th cross-disciplinary subject (Q13) in the undergraduate curriculum. Its implementation must have taken place before the beginning of the final year (practical year) in August 2013 and has to be substantiated for the medical exams taking place in October 2014. Very diverse structures pertaining to palliative care teaching were described in previous surveys at various medical faculties in Germany. As a result, the current and future plans and concepts related to content and exams of a mandatory Q13 course at the respective faculty sites should be ascertained. Methods: Since 2006, the German Medical Students' Association (bvmd) has been carrying out a bi-annual survey at all medical faculties in Germany regarding the current situation of teaching in the field of palliative care. After designing and piloting an online survey in May 2010, a one-month online survey took place. The data was assessed using a descriptive approach. Results: 31 of 36 medical faculties took part in the survey. At the time of questioning, 15 faculties already taught courses according to the requirements of the new ApprO; at three sites the Q13 is yet to be introduced commencing in 2012. A teaching curriculum for Q13 already existed at 15 faculty sites, partly based on the curricular requirements of the German Association for Palliative Medicine (DGP). Six sites described an implementation process as yet without an independent curriculum. Most of the faculties aim for 21-40 course hours, which will for the most part be provided as lectures, seminars or less often in more assisted and intense formats. The majority of the participating faculties intend an examination containing multiple choice questions. At 8 universities there is an independent Chair for palliative medicine (5 more are planned); this was linked with a higher degree of mandatory teaching in alignment with the requirements of the ApprO. A broad spectrum of educationally-involved occupational groups, specialist disciplines and external co-operating partners, were mentioned. Conclusion: The infrastructural prerequisites of the present curricular concepts and the degree of implementation of the Q13 according to the requirements of the new ApprO diverge significantly among the various medical faculties. The efforts made to produce a qualitatively high standard of teaching with regard to the multifaceted questions concerning the support for severely and terminally ill patients is as much reflected in the survey, as the special implications of an independent Chair for palliative medicine for the implementation of the requirements by law. The participation of various occupational groups in this survey as well as the broad spectrum of those involved highlights the interdisciplinary and multi-professional dimension of teaching in palliative care. PMID:22737202

  1. Spanning the canyon between stem cell transplantation and palliative care.

    PubMed

    Roeland, Eric; Ku, Grace

    2015-12-01

    Stem cell transplantation (SCT) and palliative care (PC) may initially appear to be distant extremes in the continuum of care of patients with hematologic malignancies, opposed by multiple obstacles preventing their integration. Rather, we will posit that both fields share many similarities and have much to learn from one another. PC has increasing relevance in cancer care given recent studies that link PC to improved quality-of-life, survival, and decreased cost of care. Understanding modern conceptualizations of PC and its role within SCT is key. Through the report of a single academic medical center experience with an integrated SCT and PC model over the last decade, we will discuss future opportunities for strengthening collaboration between SCT and PC. PC in SCT should be considered from the day of diagnosis and tied to need, not to prognosis. PMID:26637762

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

    PubMed Central

    Carpenter, Joan G.

    2013-01-01

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

  3. 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

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

    PubMed Central

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

    2014-01-01

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

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

    PubMed

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

    2009-03-01

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

  6. The role of the general practitioner in palliative care.

    PubMed

    Mitchell, G

    1994-07-01

    Palliative care tests the general practitioner's generalist skills. The work is not easy. We are trying to control symptoms that progress, feeling at times like the driver of a car with no brakes. It can evoke emotions of disturbing intensity. However, it is intensely rewarding work as well. The privilege of sharing life's journey with a patient, helping to enhance his or her quality of life, is one open to very few in our society. It is a privilege we should eagerly accept, as we are invited to stand with our patients facing their final challenge. PMID:7520231

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

    PubMed

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

    2012-12-01

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

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

    PubMed

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

    2016-01-01

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

  9. 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

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

    PubMed Central

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

    2009-01-01

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

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

    PubMed Central

    2014-01-01

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

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

    PubMed

    Ewing, Bonnie

    2009-01-01

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

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

    SciTech Connect

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

    2010-10-01

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

  14. Towards a standardized method of developing quality indicators for palliative care: protocol of the Quality indicators for Palliative Care (Q-PAC) study

    PubMed Central

    2013-01-01

    Background In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries. Methods and design Firstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project. Conclusion Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care. PMID:23394401

  15. How Outpatient Palliative Care Teleconsultation Facilitates Empathic Patient-Professional Relationships: A Qualitative Study

    PubMed Central

    van Gurp, Jelle; van Selm, Martine; Vissers, Kris; van Leeuwen, Evert; Hasselaar, Jeroen

    2015-01-01

    Objective The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs). This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospital-based palliative care specialists. Methods This work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations. Results The analysis of the empirical data resulted in three key concepts that describe the impact of teleconsultation on the patient-professional relationship in palliative homecare: transcending the institutional walls of home and hospital; transparency of teleconsultation technology; and technologized, intimate patient-professional relationships. Teleconsultation offers (1) condensed encounters between home-based palliative care patients and distant professionals, (2) a unique insight into the patients daily lives for palliative care specialists, and (3) long-term interaction that results in trustful relationships and experiences of intimacy and relief. Conclusions Teleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computer-mediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patients context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily palliative care practice. PMID:25902263

  16. 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

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

    PubMed

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

    2006-12-01

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

  18. 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…

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

    PubMed

    Veqar, Zubia

    2013-04-01

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

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

    PubMed Central

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

    2015-01-01

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

  2. 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

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

    PubMed Central

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

    2014-01-01

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

  4. Palliative care conundrums in an Ebola treatment centre.

    PubMed

    Dhillon, Paul; McCarthy, Sinead; Gibbs, Michael; Sue, Kyle

    2015-01-01

    We describe the treatment course and last days of a 33-year-old man from Western Africa who died from Ebola-related complications. Specifically, the issues around declaring a patient palliative in a low resource environment while dealing with a largely unknown entity, Ebola viral disease, make this an important discussion-stimulating case. The patient presented as a confirmed Ebola-positive case from a peripheral holding centre and then proceeded to deteriorate under our care. Significant neurological decline was noted and the prognosis was felt to be grim by certain providers. Other providers disagreed and a number of treatment algorithms were started and stopped during the patient's last days. He succumbed to Ebola complications after 17?days under our care. PMID:26359461

  5. Integration of Palliative Care in End-Stage Liver Disease and Liver Transplantation

    PubMed Central

    Curry, Michael; Buss, Mary; Chittenden, Eva

    2014-01-01

    Abstract Background: Patients with end-stage liver disease (ESLD) have a life-limiting illness that causes multiple distressing symptoms and negatively affects quality of life (QOL). This population traditionally has not had much attention within the palliative care community. Discussion: This article provides an evidence-based review of palliative care issues that patients with ESLD and those awaiting liver transplant face, including approaches to prognosis, symptom management, advance care planning, and end-of-life care. Conclusion: Tremendous opportunity exists to integrate palliative medicine into the care of these patients. PMID:25390468

  6. Communication About Sexuality in Advanced Illness Aligns With a Palliative Care Approach to Patient-Centered Care.

    PubMed

    Leung, Margaret W; Goldfarb, Shari; Dizon, Don S

    2016-02-01

    Treatment-related sexual complications are common in cancer patients although rarely discussed in the palliative care setting. Sexuality is an important survivorship issue and remains relevant even in the terminal setting. There are multiple barriers in dialoguing about intimacy and sexual functioning from the patient and provider perspectives. Palliative care providers, while not expected to be sexual health experts, can provide comprehensive patient-centered care by including sexual health as part of their evaluation. They can explore how sexual dysfunction can impair functioning and utilize an interdisciplinary approach to manage symptoms. Palliative care providers can help patients identify their goals of care and explore what anticipated sexual changes and treat-related side effects are tolerable and intolerable to the patient's quality of life. Principles on addressing sexuality in the palliative setting and practical ways of incorporating sexual history into the palliative care assessment are provided. PMID:26769116

  7. Oncologists Perspectives on Concurrent Palliative Care in an NCI-designated Comprehensive Cancer Center

    PubMed Central

    Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim

    2013-01-01

    Purpose To understand oncology clinicians perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. Methods Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Results Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) some patients just want to fight, and 4) helping with transitions; timing is everything. Five themes comprised oncologists views on the complementary role of palliative care: 1) refer early and often, 2) referral challenges: Palliative equals hospice; Heme patients are different, 3) palliative care as consultants or co-managers, 4) palliative care shares the load, and 5) ENABLE II facilitated palliative care integration. Conclusions Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care. PMID:23040412

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

    PubMed

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

    2015-06-01

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

  9. Care of the Terminally Ill from Religious Perspectives: Role of Palliative and Hospice Care

    PubMed Central

    Mir, Tanveer

    2012-01-01

    Health care should make an attempt to understand the different religious principles that affect end-of-life decisions in patient care. With advanced illness, defining an ethical framework is essential to understanding sensitive issues. Compassionate care is crucial in all end-of-life care settings. Physician awareness is a key principle in inculcating the religious values of patients. Cultural and religious awareness on the part of the health-care team is needed to provide patients with effective end-of-life palliative and hospice care. PMID:23610503

  10. The role of the home-care worker in palliative and end-of-life care in the community setting: a literature review.

    PubMed

    Devlin, Margaret; McIlfatrick, Sonja

    2009-11-01

    The majority of people would prefer to die at home if assured of high quality care and proper support for their families and informal carers. Home-care workers play a vital role in enabling patients to be cared for in their own homes; however, there is a lack of research on their role, focusing specifically on palliative and end-of-life care. A broad literature search was undertaken as part of a research study to explore the role of home-care workers in palliative and end-of-life care in the community. Key questions for the review included: exploring the role of home-care workers; factors that affect this role and examining training and support needs of home-care workers in providing palliative: and end-of-life care in the community. Positive aspects of their contribution were identified in terms of providing physical and social support, and having a key role to play in caring for patients at home. However, several studies highlighted negative aspects of the role, including limited availability of services, lack of continuity of care, time constraints, lack of flexibility and poor quality of communication with other services. PMID:20081726

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

    PubMed Central

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

    2011-01-01

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

  12. 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 ...

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

    PubMed Central

    2011-01-01

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

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

    PubMed Central

    Klein, Carsten; Lang, Ute; Bkki, Johannes; Sittl, Reinhard; Ostgathe, Christoph

    2011-01-01

    Summary Patients with advanced life-limiting disease often suffer from symptoms that considerably impair their quality of life and that of their families. Palliative care aims to alleviate these symptoms by a multidimensional approach. Pharmacotherapy is an essential component. The objective of this review is to give an overview of symptom-oriented drug therapy for the most important symptoms in palliative care. Leading symptoms that affect quality of life include pain, dyspnea, nausea and emesis, weakness and disorientation. Careful examination and history taking help to understand the individual mechanisms underlying these symptoms. Specific pharmacotherapy provides an efficient way to achieve symptom control in the context of palliative care. PMID:21547023

  15. [Hospice palliative care is a universal value and the essence of nursing].

    PubMed

    Chao, Co-Shi Chantal

    2015-04-01

    This article uses four examples to illustrate the recent rise of hospice palliative care as a universal value. These examples include the story of Dame Cecily Saunders, the pioneer of the palliative care movement in the U.K.; the national healthcare plan currently promoted by United States' President Obama; a survey on the topic of quality of death in 40 countries conducted by the Lien Foundation (Singapore); and the story of the Hospice Movement in Taiwan. This article further describes how hospice palliative care has changed the healthcare culture and presents the World Health Organization's definition of palliative care and the implications of this definition. Additionally, this article identifies the common palliative-care mistakes that have been made by the general public and by healthcare workers. Healthcare professionals must acquire essential relevant knowledge and skills in order to ensure that hospice palliative care addresses the needs of terminally ill patients adequately. Finally, the author describes a novel approach to instilling proper palliative-care concepts and practices that is entitled Life, Peace, Care, and Honor (LPCH or the "3344" concept). PMID:25854942

  16. 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

  17. [Personal and dignified death. The role of pastoral care in palliative medicine].

    PubMed

    Breit-Keßler, Susanne

    2016-03-01

    Palliative pastoral care is not about "adding days to life, but about "adding life to days". It does not matter whether the dying process is short or long. What matters is to ensure the best possible quality of life until the very end through mindful companionship. Palliative pastoral care is a path towards a personal dying, dying where the person is taken seriously as an individual until the last moment. Palliative care includes medical assistance, careful care, psychosocial support, and counselling that addresses the spiritual needs of the dying. This palliative care includes inpatient and outpatient hospice work and accompanies not only the patients but also their relatives. It must become the standard procedure in end of life care.The palliative pastoral care also take the needs of medical staff into account: Time-consuming care for the dying exceeds the staff's time budget. A sudden death can be perceived as traumatic. In this case palliative pastoral care must perform the tasks of crisis management, crisis intervention and de-escalation. The debriefing of involved staff can prevent the development of burn-out syndrome. In the view of holistic healthcare, health insurance funds should co-finance pastoral care. Society and humanity benefit from addressing the needs of the dying. In an economically dominated environment it is a social responsibility to make dying humane. PMID:26983110

  18. Healing Environments: Integrative Medicine and Palliative Care in Acute Care Settings.

    PubMed

    Estores, Irene M; Frye, Joyce

    2015-09-01

    Conventional medicine is excellent at saving lives; however, it has little to offer to address the physical, mental, and emotional distress associated with life-threatening or life-limiting disease. An integrative approach to palliative care in acute care settings can meet this need by creating healing environments that support patients, families, and health care professionals. Mindful use of language enhances the innate healing response, improves communication, and invites patients and families to participate in their care. Staff should be offered access to skills training to cultivate compassion and mindful practice to enhance both patient and self-care. PMID:26333757

  19. Palliative Care Caregivers' Grief Mediators: A Prospective Study.

    PubMed

    Coelho, Alexandra M; Delalibera, Mayra A; Barbosa, António

    2016-05-01

    The aim of the study is to identify the mediators of complicated grief in a Portuguese sample of caregivers. Grief mediators were prospectively evaluated using a list of risk factors completed by the palliative care team members, during the predeath and bereavement period. More than 6 months after the death, we applied PG-13 to diagnose prolonged grief disorder (PGD). The sample was composed of 64 family caregivers. Factors associated with PGD were insecure and dependent relationship, unresolved family crisis, and the perceived deterioration and disfigurement of the patient. The results show relational factors are relevant, but we must consider the reciprocal influence among factors, as well as their impact on specific symptoms. PMID:25601321

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

    PubMed

    Vandergrift, Alison

    2013-01-01

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

  1. Use of amniotic membrane in bullous keratopathy palliative care

    PubMed Central

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

    2014-01-01

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

  2. Palliative Care Training and Research: The Development in Europe and the Bologna Experience

    PubMed Central

    Bolognesi, Deborah; Brighi, Nicole; Muciarelli, Pier-Angelo; Biasco, Guido

    2013-01-01

    Development of palliative care (PC) culture spur the need of proper and formal training. Palliative medicine is not fully recognized as an academic medical discipline due to its humanistic influences, and studies show that physicians declare to be not prepared to provide care and pain management to dying patients. Nowadays, despite leading countries in PC being considered more innovative than other countries,such as Italy, facts show that the achievement of acknowledged discipline went through a long process. In Italy,professionals from about 450 PC units and organizations need to receive a proper and homogeneous training. In Italy, palliative medicine official certification is an undergoing process advocated by a few organizations and in Bologna the Academy of the Sciences of Palliative Medicine operates since 2007 with the defined mission of developing PC culture, also within the University. In order to be as much effective in pursuing its mission, the Academy has strengthened several international cooperation programs and today is leader in PC professional training and research in Italy. The recent law and its feasibility is fastening the process of development of Palliative Care Culture in Italy even if training is not properly regulated and official certification for physician is under evaluation. In Europe, the European Association of Palliative Care is stressing the need for training programs in palliative medicine and the outcomes of the dedicated task force on official certification and specialty in Palliative Medicine will remarkably force policy makers and national councils to officially recognize the discipline. PMID:23766591

  3. Global warming in the palliative care research environment: adapting to change.

    PubMed

    Fainsinger, R L

    2008-06-01

    Advocates of palliative care research have often described the cold and difficult environment that has constrained the development of research internationally. The development of palliative care research has been slow over the last few decades and has met with resistance and sometimes hostility to the idea of conducting research in 'vulnerable populations'. The seeds of advocacy for research can be found in palliative care literature from the 1980s and early 1990s. Although we have much to do, we need to recognize that palliative care research development has come a long way. Of particular note is the development of well-funded collaboratives that now exist in Europe, Canada, Australia and the USA. The European Association for Palliative Care and the International Association for Hospice and Palliative Care has recognized the need to develop and promote global research initiatives, with a special focus on developing countries. Time is needed to develop good research evidence and in a more complex healthcare environment takes increasingly more resources to be productive. The increased support (global warming) evident in the increased funding opportunities available to palliative care researchers in a number of countries brings both benefits and challenges. There is evidence that the advocacy of individuals such as Kathleen Foley, Neil MacDonald, Balfour Mount, Vittorio Ventafridda, Robert Twycross and Geoff Hanks is now providing fertile ground and a much friendlier environment for a new generation of interdisciplinary palliative care research. We have achieved many of the goals necessary to avoid failure of the 'palliative care experiment', and need to accept the challenge of our present climate and adapt and take advantage of the change. PMID:18541636

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

    PubMed Central

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

    2016-01-01

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

  5. Palliative and end-of-life care: precepts and ethics for the orthopaedic population.

    PubMed

    Petersen, Cheryl L; Breakwell, Susan; Callahan, Margaret

    2014-01-01

    Since the emergence of reports such as the and the , there continues to be a growing recognition of the multiple adverse effects of serious illness and chronic conditions, as well as the potential benefits of receiving palliative or end-of-life care. As modern technology expands its ability to support life, ethical dilemmas may be encountered in the provision of palliative or end-of-life care. Through integration of the precepts of palliative care and consideration of the relevant ethical principles, orthopaedic nurses may best meet their patients' comprehensive needs at an exceedingly difficult time. PMID:24845834

  6. Palliative care for the terminally ill in America: the consideration of QALYs, costs, and ethical issues.

    PubMed

    Yang, Y Tony; Mahon, Margaret M

    2012-11-01

    The drive for cost-effective use of medical interventions has advantages, but can also be challenging in the context of end-of-life palliative treatments. A quality-adjusted life-year (QALY) provides a common currency to assess the extent of the benefits gained from a variety of interventions in terms of health-related quality of life and survival for the patient. However, since it is in the nature of end-of-life palliative care that the benefits it brings to its patients are of short duration, it fares poorly under a policy of QALY-maximization. Nevertheless, we argue that the goals of palliative care and QALY are not incompatible, and optimal integration of palliative care into the calculation of QALY may reveal a mechanism to modify considerations of how optimal quality of life can be achieved, even in the face of terminal illness. The use of QALYs in resource allocation means that palliative care will always compete with alternative uses of the same money. More research should be conducted to evaluate choices between palliative care and more aggressive therapies for the terminally ill. However, current limited data show that investing in palliative care makes more sense not only ethically, but also financially. PMID:22071573

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

    PubMed

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

    2013-02-25

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

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

    PubMed

    Galiana, Laura; Oliver, Amparo; Sans, Noem; Benito, Enric

    2015-01-01

    Self-care is a cornerstone issue for those who deal with stressful events, as it is the case of palliative care professionals. It has been related to awareness, coping with death and quality of life, among others, but no measurement instruments have been used in palliative care professionals. This research presents and validates a brief new measure with clinical and psychometric good properties, called Professional Self-Care Scale (PSCS). The PSCS assesses professionals' self-care in three areas: physical self-care, inner self-care, and social self-care. Data come from a cross-sectional survey in a sample of 385 professionals of palliative care. The Mindful Attention Awareness Scale, the Coping with Death Scale, and the Professional's Quality of Life measure were also used. Results of the CFA showed adequate fit (?2(24, N = 385) = 140.66, p < .01; CFI = .91; GFI = .93; SRMR = .09; and RMSEA = .10). Evidence pointed better reliability indices for the 3-item physical and inner factors of self-care than for the social dimension (Rho and GLB of .64, .90, and .57, respectively). Evidence regarding validity was consistent with previous literature. When levels of self-care were examined, women showed higher levels of inner and social self-care (F(3, 371) = 3.19, p = .02, ?2 = .03, as also did psychologists when compared to doctors and nurses (F(9, 1074) = 2.00, p = .04, ?2 = .02. The PSCS has shown adequate psychometric properties, and thus it could be used as diagnostic instrument when studying professionals' health. PMID:26364786

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

    PubMed

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

    2013-09-01

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

  10. Professional and educational needs of hospice and palliative care social workers.

    PubMed

    Weisenfluh, Sherri M; Csikai, Ellen L

    2013-01-01

    In the past decade much growth has occurred in the numbers of patients and families served by hospices and palliative care services. Thus, not surprisingly, these services have also been subject to increasing regulation by governmental and accrediting entities. In order to stay up-to-date in this ever-changing environment and to continue to provide effective interventions, social workers must stay engaged in the professional community and continuing education. In this quantitative study, 1,169 practicing hospice and palliative care social workers provided information about their practice activities and agency characteristics, professional affiliations and certification, and ongoing educational needs. About one-half of respondents carried a caseload of 21-50 and were most engaged in communicating the psychosocial needs of the patient and family to other members of the team and assessing for grief and bereavement issues. The most important educational needs pertained to the psychological and social needs of patients and families and psychosocial interventions. Most were members of professional organizations and three-quarters were members of NASW. Although many were aware of the joint NASW-NHPCO social work hospice specialty certification, few held this certification yet. The results of this survey can be utilized in the design of continuing education programs and advocacy for programmatic and policy change within agencies and the industry. PMID:23438645

  11. 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. PMID:26120329

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

    PubMed Central

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

    2015-01-01

    Main Objective Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. Methods We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. Main Results and Their Significance Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.512.12) or COPD (OR 1.39; 95% CI: 1.151.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.221.40), agitation/delirium (OR 1.57; 95% CI: 1.471.68), exhaustion (OR 2.89; 95% CI: 2.613.20), euthanasia-related questions (OR 2.65; 95% CI: 2.372.96) or existential issues (OR 1.55; 95% CI: 1.311.83). Conclusion In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life. PMID:26301746

  13. Specialized Pediatric Palliative Home Care: A Prospective Evaluation

    PubMed Central

    Borasio, Gian Domenico; Nickolay, Carla; Bender, Hans-Ulrich; von Lttichau, Irene; Fhrer, Monika

    2013-01-01

    Abstract Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Methods: Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Husliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening IllnessFamily Carer Version, QOLLTI-F). Results: Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P<0.001) as perceived by the parents; and the parents' own QoL and burden relief significantly increased (QOLLTI-F, P<0.001; 7-point change on a 10-point scale), while their psychological distress and burden significantly decreased (HADS, P<0.001; HPS, P<0.001). Conclusions: The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children. PMID:24168349

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

    PubMed

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

    2000-08-01

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

  15. 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

  16. 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

  17. 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

  18. 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

  19. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach

    PubMed Central

    Kenner, C; Press, J; Ryan, D

    2015-01-01

    Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations. PMID:26597801

  20. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach.

    PubMed

    Kenner, C; Press, J; Ryan, D

    2015-12-01

    Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations. PMID:26597801

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

    MedlinePLUS

    ... cancer, heart disease, lung disease, kidney failure, AIDS, cystic fibrosis and other diseases, experience physical symptoms and emotional distress. Sometimes these are related to the patient's medical treatment. You may want to consider palliative care if ...

  2. Preventing crises in palliative care in the home. Role of family physicians and nurses.

    PubMed Central

    Howarth, G.; Willison, K. B.

    1995-01-01

    With the current shift to community care, the need for palliative care in the home involving the family physician has increased. Potential causes of crises in the home care of the dying are identified. Strategies to prevent crises are suggested that rely on a team's providing comprehensive and anticipatory care. PMID:7539653

  3. 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

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

    PubMed

    Mller-Busch, H C

    2001-12-01

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

  5. What neonatal intensive care nurses need to know about neonatal palliative care.

    PubMed

    Ahern, Kathy

    2013-04-01

    The purpose of this study was to identify and prioritize topics for a professional development program in neonatal palliative care. A total of 276 nurses and midwives who work in an Australian neonatal intensive care unit (NICU) and 26 international healthcare professionals working in NICU and palliative care served as participants. A Delphi technique was used, consisting of a series of rounds of data collection via interview and questionnaire, to identify and consolidate opinions of nurses and other healthcare professionals who work in neonatal intensive care units. The main outcome measures were: (1) Topics to be included in a professional development program for nurses working in neonatal intensive care units and (2) the preferred format of the program. Twenty-three high-priority topics were identified, which included preparing families when death is imminent, how to provide emotional support to grieving parents, advocating for a dying baby, and assessing and managing pain in a dying baby. Care of a dying infant requires the same skill set as caring for older terminally ill children internationally. A combination of face-to-face lectures and interactive workshops using case studies and audiovisual examples is the preferred format. PMID:23532030

  6. 'Someone to talk to' and 'pain control': what people expect from a specialist palliative care team.

    PubMed

    Jarrett, N; Payne, S; Turner, P; Hillier, R

    1999-03-01

    This paper presents a qualitative analysis of a subsample of data from a larger investigation into general practitioner referrals to specialist palliative care services (SPCS). The aim was to identify the expectations and perceptions of patients with advanced cancer and their relatives. Twenty-nine individuals were interviewed (18 patients, 11 relatives). Qualitative analysis of the interview transcripts was undertaken using an approach based on interpretative phenomenological analysis. The results indicated that SPCS were perceived as providing psychosocial services, characterized as 'support' and 'someone to talk to'. SPCS were expected to have 'expertise in symptom control', particularly in relation to pain management. The study demonstrated that patients' and relatives' expectations of a referral to SPCS were of psychosocial support and symptom control. It is argued that the implications of this restricted view of SPCS may mean that other salient concerns are not raised by patients and relatives. PMID:10474696

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

    PubMed

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

    2016-04-01

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

  8. Supportive and palliative care for metastatic breast cancer: resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement.

    PubMed

    Cleary, James; Ddungu, Henry; Distelhorst, Sandra R; Ripamonti, Carla; Rodin, Gary M; Bushnaq, Mohammad A; Clegg-Lamptey, Joe N; Connor, Stephen R; Diwani, Msemo B; Eniu, Alexandru; Harford, Joe B; Kumar, Suresh; Rajagopal, M R; Thompson, Beti; Gralow, Julie R; Anderson, Benjamin O

    2013-10-01

    Many women diagnosed with breast cancer in low- and middle-income countries (LMICs) present with advanced-stage disease. While cure is not a realistic outcome, site-specific interventions, supportive care, and palliative care can achieve meaningful outcomes and improve quality of life. As part of the 5th Breast Health Global Initiative (BHGI) Global Summit, an expert international panel identified thirteen key resource recommendations for supportive and palliative care for metastatic breast cancer. The recommendations are presented in three resource-stratified tables: health system resource allocations, resource allocations for organ-based metastatic breast cancer, and resource allocations for palliative care. These tables illustrate how health systems can provide supportive and palliative care services for patients at a basic level of available resources, and incrementally add services as more resources become available. The health systems table includes health professional education, patient and family education, palliative care models, and diagnostic testing. The metastatic disease management table provides recommendations for supportive care for bone, brain, liver, lung, and skin metastases as well as bowel obstruction. The third table includes the palliative care recommendations: pain management, and psychosocial and spiritual aspects of care. The panel considered pain management a priority at a basic level of resource allocation and emphasized the need for morphine to be easily available in LMICs. Regular pain assessments and the proper use of pharmacologic and non-pharmacologic interventions are recommended. Basic-level resources for psychosocial and spiritual aspects of care include health professional and patient and family education, as well as patient support, including community-based peer support. PMID:23972474

  9. Palliative care at home: an audit of cancer deaths in Grampian region.

    PubMed Central

    Millar, D G; Carroll, D; Grimshaw, J; Watt, B

    1998-01-01

    BACKGROUND: Ninety per cent of the last year of life of cancer patients is spent at home. Some studies have suggested that care in this setting is often suboptimal. Information on the standard of palliative care delivered at home by general practitioners (GPs) and their teams is limited, and clarification of the problems faced is needed. AIM: To audit the home-based palliative care of patients dying of cancer. METHOD: Matched postal questionnaires were sent to the GPs and nurses of 1086 successive patients dying of cancer in whatever setting in the Grampian region of Scotland some six weeks after the death to establish the professionals' perception of symptom control, communication problems, use of services, and information given to patients and relatives. RESULTS: Response rates were 88.8% for GPs (964 out of 1086) and 87.1% for nurses (325 out of 375 that were passed on to nurses). Two-thirds of patients received palliative care at home. Pain was poorly controlled in 15.7%, and poor control of other symptoms ranged from 13.8% (nausea and vomiting) to 21% (depression and dyspnoea). Communication difficulties were present in 93.7% of cases, although only 5.2% of these were of a major nature. District nurses were involved in 76.7% of cases and Macmillan nurses in 28.0%. Twenty-six per cent of referrals to district nurses were assessed as being late in the course of the illness. Patients were fully informed about the diagnosis in 66.3% of cases and about the prognosis in 55.4%. General practitioners were more likely to report the presence of communication problems between themselves and the patient (when compared with nurses: 43.9% versus 28.0%), more likely to report that patients were 'not at all informed' about self-help groups (57.5% versus 36.3%), and were less likely to report the involvement of occupational therapists (21.8% versus 39.7%). CONCLUSIONS: Levels of reporting of poor symptom control by professionals was much lower than levels reported by relatives in other studies, but there was no difference between the reporting of GPs and nurses. However, a number of areas were identified where care could be enhanced by improved teamwork and further education and training in symptom control, as well as in communication, use of services, and information provision. PMID:9747545

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

    PubMed

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

    2006-03-01

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

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

    PubMed Central

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

    2013-01-01

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

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

    PubMed Central

    Chong, Lee Ai; Khalid, Farah

    2016-01-01

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

  13. A comprehensive picture of palliative care at home from the people involved.

    PubMed

    Appelin, Gunilla; Brobck, Gunilla; Berter, Carina

    2005-12-01

    The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home? The findings indicate that the advantages of palliative care at home is; striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation. PMID:16310139

  14. Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care

    PubMed Central

    Cook, Karen; Jack, Susan; Thabane, Lehana; Browne, Gina

    2013-01-01

    Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults' resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults' health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals. PMID:23997951

  15. The need for hospital-based neonatal palliative care programs in Saudi Arabia.

    PubMed

    Al-Alaiyan, Saleh; Al-Hazzani, Fahad

    2009-01-01

    The terms palliative care, supportive care, and comfort care are used to describe individualized care that can provide a dying person the best quality of life until the end. The term "end-of-life care" is also used in a general sense to refer to all aspects of care of a patient with a potentially fatal condition. While the concept of palliative care is not new, it has only recently been applied to the neonatal population. To the best of our knowledge, none of the neonatal intensive care units (NICUs) in Saudi Arabia have adopted a neonatal program for palliative care. We believe the main reason is lack of knowledge of such programs and the fear of being accused of being heartless and cruel by providing comfort care for dying babies. Comfort care begins with the diagnosis of a life-threatening/terminal condition, and continues throughout the course of illness regardless of the outcome. In this perspective, our aim is to introduce these programs for caregivers in the NICUs in Saudi Arabia. For this purpose, we have reviewed the current recommendations in establishing neonatal palliative care programs and discussed some of the social and religious aspects pertaining to this issue. PMID:19700889

  16. 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 services 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 610?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

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

    PubMed

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

    2007-01-01

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

  18. [The role of neonatal nursing in palliative care of the newborn].

    PubMed

    Herranz-Rubia, Nuria

    2007-01-01

    Nursing dying newborns is an inherent part of working in a neonatal intensive care (NICU). Holistic care involves recognizing the physical, emotional and spiritual needs of the dying infant and the family. The present article aims to explore how nurses can provide the best practices in neonatal palliative care. Palliative care is composed of three components: assistance with end-of-life decision making; pain and comfort management, and bereavement support with cultural competence. These issues have implications for improving nursing practice. PMID:17683690

  19. 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

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

    PubMed Central

    2014-01-01

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

  1. Cannabis in palliative medicine: improving care and reducing opioid-related morbidity.

    PubMed

    Carter, Gregory T; Flanagan, Aaron M; Earleywine, Mitchell; Abrams, Donald I; Aggarwal, Sunil K; Grinspoon, Lester

    2011-08-01

    Unlike hospice, long-term drug safety is an important issue in palliative medicine. Opioids may produce significant morbidity. Cannabis is a safer alternative with broad applicability for palliative care. Yet the Drug Enforcement Agency (DEA) classifies cannabis as Schedule I (dangerous, without medical uses). Dronabinol, a Schedule III prescription drug, is 100% tetrahydrocannabinol (THC), the most psychoactive ingredient in cannabis. Cannabis contains 20% THC or less but has other therapeutic cannabinoids, all working together to produce therapeutic effects. As palliative medicine grows, so does the need to reclassify cannabis. This article provides an evidence-based overview and comparison of cannabis and opioids. Using this foundation, an argument is made for reclassifying cannabis in the context of improving palliative care and reducing opioid-related morbidity. PMID:21444324

  2. [Nursing in palliative care to children and adolescents with cancer: integrative literature review].

    PubMed

    da Costa, Thailly Faria; Ceolim, Maria Filomena

    2010-12-01

    Pediatric palliative care is a challenge for nursing because it requires emotional balance and knowledge about its specific features. This study is an integrative literature review that aims to identify nursing actions in palliative care for children and adolescents with cancer, considering peculiarities of the disease and dying process. The review was performed by searching for articles indexed in Biblioteca Virtual da Adolescncia (Adolec), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Literatura Latino-Americana e do Caribe em Cincias da Sade (LILACS) and PubMed databases from January 2004 till May 2009. From 29 references found, six met inclusion criteria. Results show teamwork, home care, pain management, dialogue, family support and particularities of childhood cancer fundamental tools for nursing in palliative care. The complexity of care in this situation requires solidarity, compassion, support and relieving suffering. PMID:21805890

  3. 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

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

    PubMed Central

    2013-01-01

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

  5. Understanding the challenges of palliative care in everyday clinical practice: an example from a COPD action research project.

    PubMed

    Hynes, Geralyn; Kavanagh, Fiona; Hogan, Christine; Ryan, Kitty; Rogers, Linda; Brosnan, Jenny; Coghlan, David

    2015-09-01

    Palliative care seeks to improve the quality of life for patients suffering from the impact of life-limiting illnesses. Palliative care encompasses but is more than end-of-life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non-specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports on an action research project aimed at developing respiratory nursing practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non-specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end-of-life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care. PMID:25514830

  6. 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

  7. Palliative and end-of-life decision-making in dementia care.

    PubMed

    Mitchell, Gary

    2015-11-01

    This paper will highlight some of the pertinent issues associated with palliative and end-of-life decision-making in relation to dementia. To achieve this, the author will consider why there is disparity in relation to shared decision-making practices across non-malignant disease through exploration of models of disease trajectories. The author will then go on to highlight how people living with dementia, a non-malignant disease, have a human right to receive palliative care and be an active agent in the shared decision-making process about their future and care preferences. The challenges of shared decision-making in dementia care will be discussed along with some implications for nursing practice. The aim of this paper is to provide nurses, practising across all settings, with an overview of the fundamental importance of timely palliative and end-of-life shared decision-making in dementia care. PMID:26619237

  8. Furry and feathered family members--a critical review of their role in palliative care.

    PubMed

    Chur-Hansen, Anna; Zambrano, Sofia C; Crawford, Gregory B

    2014-09-01

    This article presents a comprehensive critical review of the peer-reviewed literature on palliative care and companion animals (CAs), reporting on the evidence and knowledge base regarding CAs and their role for people at end of life. PubMed, PsycINFO, Medline, Scopus, and Google Scholar were searched for studies pertaining to CAs, end of life, and hospice palliative care. Six studies dealt specifically with empirical research. The remaining literature addressed the topic peripherally or anecdotally. The evidence for efficacy and the knowledge base about the role of CAs at end of life in hospice and palliative care is weak. Further efforts are required to study the conditions under which CAs may be beneficial for patient care, including acceptability to staff, family, and other patients, and with consideration of welfare for the animals involved. PMID:23892336

  9. Using the Canadian Code of Ethics for Registered Nurses to explore ethics in palliative care research.

    PubMed

    Arraf, Kelly; Cox, Ginny; Oberle, Kathleen

    2004-11-01

    Nursing research in palliative care raises specific and challenging ethical issues. Questions have arisen about whether such research is morally justified, given the low likelihood of direct benefit to dying patients as research participants. The Canadian Code of Ethics for Registered Nurses outlines eight primary values intended to guide nursing practice. We use these values to explore the moral dimensions of research with the palliative care population. Our conclusion is that palliative care research is needed to foster excellent care for these patients and their families, but that nurses must remain constantly vigilant to ensure that participants are protected from resultant harms. Through this exploration we highlight particular considerations that nurse researchers must contemplate when accessing a vulnerable population. PMID:15597940

  10. End of Life Care Policy for the Dying: Consensus Position Statement of Indian Association of Palliative Care

    PubMed Central

    Macaden, Stanley C; Salins, Naveen; Muckaden, Maryann; Kulkarni, Priyadarshini; Joad, Anjum; Nirabhawane, Vivek; Simha, Srinagesh

    2014-01-01

    EXECUTIVE SUMMARY Purpose: To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives. Evidence: A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery. Recommendations: Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policyProviding a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom controlPalliative care and EOLC to be part of all hospital and community/home based programsStandards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodiesAll health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education. PMID:25191002

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

    PubMed Central

    Sltten, Kari; Hatlevik, Ove; Fagerstrm, 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

  12. Development of a set of process and structure indicators for palliative care: the Europall project

    PubMed Central

    2012-01-01

    Background By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs. PMID:23122255

  13. Impact of Death Work on Self: Existential and Emotional Challenges and Coping of Palliative Care Professionals.

    PubMed

    Chan, Wallace Chi Ho; Fong, Agnes; Wong, Karen Lok Yi; Tse, Doris Man Wah; Lau, Kam Shing; Chan, Lai Ngor

    2016-02-01

    Palliative care professionals, such as social workers, often work with death and bereavement. They need to cope with the challenges on "self" in working with death, such as coping with their own emotions and existential queries. In this study, the authors explore the impact of death work on the self of palliative care professionals and how they perceive and cope with the challenges of self in death work by conducting a qualitative study. Participants were recruited from the palliative care units of hospitals in Hong Kong. In-depth interviews were conducted with 22 palliative care professionals: five physicians, 11 nurses, and six social workers. Interviews were transcribed to text for analysis. Emotional challenges (for example, aroused emotional distress from work) and existential challenges (for example, shattered basic assumptions on life and death) were identified as key themes. Similarly, emotional coping (for example, accepting and managing personal emotions) and existential coping (for example, rebuilding and actualizing life-and-death assumptions) strategies were identified. This study enhances the understanding of how palliative care professionals perceive and cope with the challenges of death work on the self. Findings may provide insights into how training can be conducted to enhance professionals' self-competence in facing these challenges. PMID:26946884

  14. [Assessment of the spiritual needs of patients in palliative care].

    PubMed

    Hajnová Fukasová, E; Bužgová, R; Feltl, D

    2015-01-01

    The appraisal and the right diagnostics of all needs and problems of patients, including the spiritual needs, are unavoidable for increase of the quality of the all-embracing nursing care. In the case of satisfying of the needs of the patients, it is important to have view the person as a unity of thebody and the soul. Identification and satisfying of the spiritual needs are not uncomplicated; moreover, spirituality does not have a target--ed and clear definition. In the palliative care, the solution and saturation of spiritual needs have a great priority, and it can be the key aspect of psychological activity. Also, medical experts are becoming aware of the meaning of spirituality as the part of psychological contentment more and more. Smaller importance is attached to measurement of spiritual needs, and in many medical institutions ends at the case history with the questions: "Are you a believer?", "Do you have any spiritual needs?". Spirituality and religion are very personal matters of every human. Many patients turn to religion to find answers to difficult questions while others find support through the spiritual beliefs outside the scope of organized religion. Mistaking of meanings of the spirituality and religionism can lead to many misunderstandings. The basic condition for the right diagnostics and satisfaction of spiritual needs are the definition of the used terms and using of standardized measurement devices in the clinical praxis. The target of summarizing study was to define the term of spirituality, to describe a lot of measurement devices these are suitable for the evaluation of human spiritual needs. For methodology for acquiring of the results of research works that are concerned with the questions of spiritual needs in case of the incurable patients, the following databases were used (2005-2013): EBSCO, Bibliographia Medica Čechoslovaca, Google Scholar, Solen - www.solen.cz, Profese on-line as the source of the data. The choice of studies were as follows the systematic overview, the summarizing essay, the qualitative and quantitative study. PMID:25692750

  15. 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

  16. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness.

    PubMed

    Harding, R; Higginson, I J

    2003-01-01

    Informal carers in cancer and palliative care are known to have high needs and psychological morbidity, yet a literature review identified few targeted interventions. This systematic review of interventions for carers of patients using home cancer and palliative care services searched Medline, CancerLit, Psycinfo and Cinahl databases. The terms used were carer(s), caregiver(s), palliative and cancer. Papers that reported interventions for adults actively providing informal care for noninstitutionalized cancer and palliative care patients were reviewed. Twenty-two interventions were identified, comprising home nursing care (four), respite services (three), social networks and activity enhancement (two), problem solving and education (three) and group work (10). Of these, nine were delivered solely to carers (i.e., were targeted services). Only six of the carers' interventions had been evaluated, two of these had used a randomized control trial (RCT; grades IB), three employed a single group methodology (two prospective grades IIIC and one retrospective grade IIIC) and one was evaluated using facilitator feedback. There was a lack of outcome evaluation designs, small sample sizes and a reliance on intervention descriptions and formative evaluations. Methodological challenges may mean alternatives to 'pure' RCTs should be considered. The current evidence contributes more to understanding feasibility and acceptability than to effectiveness. Practitioners and evaluators must prioritize the further development of intervention studies. PMID:12597468

  17. 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

  18. 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

  19. The nursing dimension of providing palliative care to children and adolescents with cancer.

    PubMed

    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

  20. [The nurse-healthcare assistant partnership in a mobile pain and palliative care team].

    PubMed

    Chevaucherie, Isabelle; Fernandes, Martine; Lariche, Stphanie; Mussault, Pascale

    2015-02-01

    The mission of the mobile pain and palliative care team is to improve the quality of care and comfort of patients. At Longjumeau general hospital the nurse-healthcare assistant partnership within this team enables the patient to benefit from the caregivers' two-way perspective, while allowing the professionals to share knowledge and to be stronger in the face of suffering. PMID:26144825

  1. 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

  2. Overcoming the Obstacles in Promoting Hospice Palliative Care--Sharing Experiences of the Taiwan Changhua Christian Hospital.

    PubMed

    Tsai, Pei-Yu

    2015-01-01

    Hospice palliative care for terminal patients is necessary, yet challenges are on the way worldwide. This study demonstrated that hospice palliative care has been quickly developed in Taiwan due to the support of the National Health Insurance system, the promotion by civil societies and religious groups, patient's legal right for DNR, easier access to pain killers through medical prescription, and well-planned hospice staff training programs. This paper introduces how hospice consultation is provided by a comprehensive hospice palliative team at Changhua Christian Hospital to establish trust and cooperation with the medical team, and to improve hospice-palliative care referral and utilization rates. PMID:26867341

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

    PubMed Central

    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 benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement programme in palliative care. Methods Nine care homes involved in the GSFCH took part. We conducted semi-structured interviews with nine care home managers, eight nurses, nine care assistants, eleven residents and seven of their family members. We used the Framework approach to qualitative analysis. The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying. This enabled us to consider benefits of, and barriers to, individual components of the programme, as well as of the programme as a whole. Results Perceived benefits of the GSFCH included: improved symptom control and team communication; finding helpful external support and expertise; increasing staff confidence; fostering residents' choice; and boosting the reputation of the home. Perceived barriers included: increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. Many of the tools and tasks in the GSFCH focus on improving communication. Participants described effective communication within the homes, and with external providers such as general practitioners and specialists in palliative care. However, many had experienced problems with general practitioners. Although staff described the benefits of supportive care registers, coding predicted stage of illness and advance care planning, which included improved communication, some felt the need for more experience of using these, and there were concerns about discussing death. Conclusions Most of the barriers described by participants are relevant to other interventions to improve end of life care in care homes. There is a need to investigate the impact of quality improvement programmes in care homes, such as the GSFCH, on a wider range of outcomes for residents and their families, and to monitor the sustainability of any resulting improvements. It is also important to explore the impact of the different components of these complex interventions. PMID:21658253

  4. Bereaved Caregivers as Educators in Pediatric Palliative Care: Their Experiences and Impact

    PubMed Central

    Green, Angela; Towe, Shannon; Huett, Amy

    2013-01-01

    Abstract Background With the continuing growth of pediatric palliative care, there is an increasing need to develop effective training for health care professionals. Bereaved parents have participated in the training of health care professionals utilizing curriculum from the Initiative for Pediatric Palliative Care (IPPC), but the experience of bereaved parents as educators has not been studied. Objectives This qualitative research examined the experience of bereaved parents involved in pediatric palliative care education of health care professionals and the challenges and possible benefits for the health care professionals. Methods Nine bereaved parents and eleven health care professionals were interviewed about their experiences in a pediatric palliative care education program utilizing the IPPC curriculum. The interviews were recorded, transcribed, coded and analyzed for themes and subthemes. Results Major themes found were a sense of purpose for the parents and benefits and challenges for both parents and professionals. The experience for parents contributed to their meaning-making for both their children's lives and deaths. Parents and professionals identified mutual learning and increased mutual understanding. Some professionals noted that the presence of parents may have limited the openness of discussion of the professionals and parents acknowledged challenges of emotional management in their participation in the educational program. Both parents and professionals recognized and described challenges involved in working sensitively with patients and families without being overwhelmed by the intensity of situations where children die. Conclusion More benefits than burdens were experienced by both parents and health care professionals from the participation of bereaved parents in the palliative care trainings. PMID:23725232

  5. Outpatient Palliative Care for Chronic Obstructive Pulmonary Disease: A Case Series

    PubMed Central

    Yount, Susan; Szmuilowicz, Eytan; Rosenberg, Sharon R.; Kalhan, Ravi

    2014-01-01

    Abstract Background: Patients with chronic obstructive pulmonary disease (COPD) have well-documented symptoms that affect quality of life. Professional societies recommend palliative care for such patients, but the optimal way of delivering this care is unknown. Objective: To describe an outpatient palliative medicine program for patients with COPD. Design: Retrospective case series. Setting/Subjects: Thirty-six patients with COPD followed in a United States academic outpatient palliative medicine clinic. Measurements: Descriptive analysis of sociodemographic data, disease severity and comorbidities, treatments, hospitalizations, mortality, topic discussion, and symptom assessment. Results: Thirty-six patients (representing 5% of the total number of patients with COPD seen in a specialty pulmonary clinic) were seen over 11 months and followed for 2 years. Seventy-seven percent of patients were Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage 34 and 72% were on oxygen at home. No patients had documented advanced directives at the initial visit but documentation increased to 61% for those who had follow-up appointments. The most commonly documented topics included symptoms (100%), social issues (94%), psychological issues (78%), and advance care planning (75%). Of symptoms assessed, pain was the least prevalent (51.6%), and breathlessness and fatigue were the most prevalent (100%). Symptoms were often undertreated prior to the palliative care appointment. During the 3-year study period, there were 120 hospital admissions (median, 2) and 12 deaths (33%). Conclusions: The patients with COPD seen in the outpatient palliative medicine clinic had many comorbid conditions, severe illness, and significant symptom burden. Many physical and psychological symptoms were untreated prior to the palliative medicine appointment. Whether addressing these symptoms through a palliative medicine intervention affects outcomes in COPD is unknown but represents an important topic for future research. PMID:24933590

  6. What about the trach? Tracheotomy removal as a palliative care maneuver.

    PubMed

    Newman, Alfred J; Kvale, Elizabeth A; Williams, Beverly R; Bailey, F Amos

    2007-01-01

    Tracheotomy is performed on patients with airway obstruction or prolonged mechanical ventilation. Tracheotomy patients are increasingly being referred to hospice and palliative care. This case series describes a process for evaluating the ongoing need for tracheotomy and the impact of tracheotomy removal. A retrospective cohort design was used in which charts were reviewed of all tracheotomy patients referred to the palliative care unit between November 1, 1998, and July 31, 2001. Tracheotomy was present in 13 of 791 palliative care unit admissions. Persistent airway obstruction contraindicated tracheotomy removal in 5 patients. The remaining patients had a successful "button" trial with subsequent tracheotomy removal. They incurred no complications and exhibited improved functional status and decreased symptom burden. Tracheotomy removal is safe and beneficial in this patient subset and should be considered an alternative to prolonged tracheotomy. PMID:17601830

  7. Improving medical graduates’ training in palliative care: advancing education and practice

    PubMed Central

    Head, Barbara A; Schapmire, Tara J; Earnshaw, Lori; Chenault, John; Pfeifer, Mark; Sawning, Susan; Shaw, Monica A

    2016-01-01

    The needs of an aging population and advancements in the treatment of both chronic and life-threatening diseases have resulted in increased demand for quality palliative care. The doctors of the future will need to be well prepared to provide expert symptom management and address the holistic needs (physical, psychosocial, and spiritual) of patients dealing with serious illness and the end of life. Such preparation begins with general medical education. It has been recommended that teaching and clinical experiences in palliative care be integrated throughout the medical school curriculum, yet such education has not become the norm in medical schools across the world. This article explores the current status of undergraduate medical education in palliative care as published in the English literature and makes recommendations for educational improvements which will prepare doctors to address the needs of seriously ill and dying patients. PMID:26955298

  8. Palliative care program effectiveness research: developing rigor in sampling design, conduct, and reporting.

    PubMed

    Bakitas, Marie A; Lyons, Kathleen Doyle; Dixon, Jane; Ahles, Tim A

    2006-03-01

    Research on palliative care presents some unique sampling challenges. The purpose of this paper is to articulate the sampling challenges that palliative care researchers face during phases of study design, conduct, and the reporting of results. Challenges include identifying a target population, avoiding selection bias in the face of clinician and patient denial of serious illness, developing eligibility criteria for a seriously ill population, minimizing high patient refusals due to illness, and accurate reporting of all screened and eligible participants. These challenges are explored within the context of a randomized clinical trial testing a palliative care intervention. Suggestions for improving scientific rigor in sampling design include 1) defining a target population that is consistent with research goals; 2) identifying eligibility criteria that are objective and understandable to clinicians to yield the desired sample; and 3) reporting results about the target population, sample eligibility/exclusions, and participation using standardized criteria. PMID:16563321

  9. Addressing the Concerns Surrounding Continuous Deep Sedation in Singapore and Southeast Asia: A Palliative Care Approach.

    PubMed

    Krishna, Lalit Kumar Radha

    2015-09-01

    The application of continuous deep sedation (CDS) in the treatment of intractable suffering at the end of life continues to be tied to a number of concerns that have negated its use in palliative care. Part of the resistance towards use of this treatment option of last resort has been the continued association of CDS with physician-associated suicide and/or euthanasia (PAS/E), which is compounded by a lack clinical guidelines and a failure to cite this treatment under the aegis of a palliative care approach. I argue that reinstituting a palliative care-inspired approach that includes a holistic review of the patient's situation and the engagement of a multidisciplinary team (MDT) guided by clearly defined practice requirements that have been lacking amongst many prevailing guidelines will overcome prevailing objections to this practice and allow for the legitimization of this process. PMID:26173777

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

    PubMed

    de Vasconcelos, Monica Ferreira; da Costa, Solange Ftima Geraldo; Lopes, Maria Emlia Limeira; Abro, Ftima 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 Joo Pessoa in the State of Paraba. 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. Prescription Pattern of Analgesic Drugs for Patients Receiving Palliative Care in a Teaching Hospital in India

    PubMed Central

    Menezes, Vishma Hydie; Nair, Shoba N; Soumya, MS; Tarey, SD

    2016-01-01

    Background: Drugs used in the palliative care unit for managing symptoms are major contributors toward the expenditure occurring in palliative care. This study was conducted to understand the prescription pattern of analgesic drugs in the patients who are receiving palliative care in a teaching hospital in India by a retrospective study of case records. Methods: Case record based, retrospective, descriptive study was conducted at the Pain and Palliative Care Department of St. John's Medical College Hospital, Bengaluru. Case record files of all patients referred to Pain and Palliative Care Department for the treatment of pain in the year of 2012 were studied. Patients’ age, gender, diagnoses, numerical pain rating scale (0–10), drugs prescribed, dosage, frequency, route of administration were recorded. The difference in drug utilization between the genders was done using Chi-square test. Data were collected from 502 patients of which 280 (56%) were males and 222 (44%) were females. Twelve percent of patients had mild pain (1–3), 34% had moderate pain (4–6), and 54% had severe pain (7–10). The most commonly used analgesic drugs were opioids (47%), followed by nonsteroidal anti-inflammatory drugs (36%). The opioids used were tramadol (56%), and morphine (38%). Ninety percent of patients with numerical pain scale more than 6 received morphine. There was no difference in analgesic drug utilization with regards to gender. Prescription pattern differed depending on the severity of pain. Opioids were the most commonly used drugs for pain management. Conclusion: The study shows that prescription pattern in palliative care unit of this hospital was in accordance with WHO pain management guidelines. The study showed the current trend in prescription of analgesic drugs in the teaching hospital where the study was conducted. PMID:26962282

  12. 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

  13. 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

  14. Dying in Palliative Care Units and in Hospital: A Comparison of the Quality of Life of Terminal Cancer Patients.

    ERIC Educational Resources Information Center

    Viney, Linda L.; And Others

    1994-01-01

    Compared quality of life of terminal cancer patients (n=182) in two palliative care units with that of those in general hospital. Patients in specialized palliative care units were found to differ from those dying in hospital, showing less indirectly expressed anger but more positive feelings. They also reported more anxiety about death but less

  15. 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

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

    PubMed

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

    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 Joo Pessoa, State of Paraba. 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

  17. ‘No matter what the cost’: A qualitative study of the financial costs faced by family and whānau 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/whānau 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 whānau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings. PMID:25680378

  18. The challenge of providing palliative care in the nursing home: part 1 external factors.

    PubMed

    Wowchuk, Suzanne M; McClement, Susan; Bond, John

    2006-06-01

    One impact of the baby boom generation and improved medical care is that nursing homes will be the place of care and site of death for growing numbers of frail, older persons dying of chronic progressive illnesses. The nursing home settings may appear to be an appropriate environment wherein residents could receive palliative care, but the literature suggests that provision of such care is replete with challenge. Some of these challenges are external to the nursing home environment and are beyond the setting's control, others have internal origins and to some extent may be under the home's control. In part I of this two-part article, we review and critically analyse the primary external factors identified in the literature -- characteristics of the residents -- as they impact on the ability of care homes to deliver palliative care. PMID:16926736

  19. Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups.

    PubMed

    Inglin, Susanne; Hornung, Rainer; Bergstraesser, Eva

    2011-08-01

    The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland. PMID:21274564

  20. Transmural palliative care by means of teleconsultation: a window of opportunities and new restrictions

    PubMed Central

    2013-01-01

    Background Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural palliative care is, however, largely lacking. This paper aims at describing elements of both the physical workplace and the cultural-social context of the palliative care practice, which are imperative for the use of teleconsultation technologies. Methods A semi-structured expert meeting and qualitative, open interviews were deployed to explore professionals assumptions and wishes, which are considered to contain latent presumptions about the practices physical workplace and latent elements of the cultural-social context, regarding (1) the mediating potential of audio-visual teleconsultation, (2) how the audio-visual teleconsultations will affect medical practice, and (3) the design and usage of the teleconsultation technology. We used a qualitative analysis to investigate how palliative care professionals interpret the teleconsultation package in preparation. The analysis entailed open and axial coding techniques developed in a grounded theory approach. Results Respondents assume: 1. teleconsultation will hinder physical proximity, thereby compromising anamnesis and diagnosis of new or acutely ill patients as well as real contact with the person behind the patient; 2. teleconsultation will help patients becoming more of a pivotal figure in their own care trajectory; 3. they can use teleconsultation to keep a finger on the pulse; 4. teleconsultations have a healing effect of their own due to offered time and digital attention; 5. teleconsultation to open up an additional gray network outside the hierarchical structures of the established chain of transmural palliative care. This network could cause bypassing of caregivers and uncertainty about responsibilities; 6. teleconsultations lead to an extended flow of information which helps palliative care professionals to check the stories of patients and medical specialists. Conclusions Professionals assume teleconsultation co-defines a new patientprofessional relationship by extending hospital-based caregivers perceptions of as well as attention for their patients. At the cost, however, of clinical and personal connectedness. Secondly, a hermeneutics is needed to carefully interpret teleconsultation images. Thirdly, teleconsultations transform caregiving cultures as formerly separated care domains collide, demanding a redefinition of roles and responsibilities. PMID:23497307