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Journal of the American Medical... Feb 2011The goals of palliative care address critical issues for individuals with complex and serious illness residing in nursing homes, including pain and symptom management,...
The goals of palliative care address critical issues for individuals with complex and serious illness residing in nursing homes, including pain and symptom management, communication, preparation for death, decisions about treatment preferences, and caregiver support. Because of the uncertain prognosis associated with chronic nonmalignant diseases such as dementia, many nursing home residents are either not referred to hospice or have very short or very long hospice stays. The integration of palliative care into nursing homes offers a potential solution to the challenges relating to hospice eligibility, staffing, training, and obtaining adequate reimbursement for care that aligns with resident and surrogate's preferences and needs. However, the delivery of palliative care in nursing homes is hindered by both regulatory and staffing barriers and, as a result, is rare. In this article, we draw on interviews with nursing home executives, practitioners, and researchers to describe the barriers to nursing home palliative care. We then describe 3 existing and successful models for providing nonhospice palliative care to nursing home residents and discuss their ongoing strengths and challenges. We conclude with specific policy proposals to expedite the integration of palliative care into the nursing home setting.
Topics: Government Regulation; Humans; Interviews as Topic; Models, Theoretical; Nursing Homes; Palliative Care; Personnel Staffing and Scheduling; Program Development; United States
PubMed: 21266284
DOI: 10.1016/j.jamda.2010.07.016 -
Journal of Pain and Symptom Management Jan 2013Social relations and networks are vital for sustaining and enhancing end-of-life care. The social capital concept supports a framework to understand the association... (Review)
Review
A social capital framework for palliative care: supporting health and well-being for people with life-limiting illness and their carers through social relations and networks.
CONTEXT
Social relations and networks are vital for sustaining and enhancing end-of-life care. The social capital concept supports a framework to understand the association between social relations and well-being; yet, to date, there has been very limited investigation of social capital in the palliative care literature. A framework for understanding social contexts in end-of-life care is necessary.
OBJECTIVES
To summarize the literature on social capital, well-being, and quality of life for key outcomes to inform a model of social capital in palliative care.
METHODS
The electronic databases MEDLINE (1997 to March 2011), Embase (1997 to March 2011), CINAHL (1997 to March 2011), and PsycINFO (1997 to March 2011) were searched using key/MeSH search terms of "social capital," "palliative care," and "well-being" and/or "quality of life." The literature was reviewed to identify key concepts to develop and inform a palliative care social capital framework.
RESULTS
A total of 93 articles were included in the literature review, with only two articles identifying discourse on social capital and palliative care. Four key areas integrating the social capital outcomes informed a framework for palliative care.
CONCLUSION
The social capital concept provides a structure for understanding how the organization and meaning of social contexts can potentially enhance or hinder end-of-life care. Research that identifies specificity in application of social capital concepts is fundamental to issues of access to services, sustaining levels of care, quality of life, and well-being. The importance of "bridged" social capital relations and networks for improved resource acquisition and information flow was identified in the literature and outlined within the palliative care social capital framework. Differential access to social capital by disadvantaged groups provides further impetus to engage a model of social capital for palliative care.
Topics: Caregivers; Humans; Palliative Care; Personal Satisfaction; Quality of Life; Social Support
PubMed: 22795051
DOI: 10.1016/j.jpainsymman.2011.12.283 -
Annals of Oncology : Official Journal... Feb 1996Cancer patients have physical, social, spiritual an emotional needs. They may suffer from severe physical symptoms, from social isolation and a sense of spiritual... (Review)
Review
Cancer patients have physical, social, spiritual an emotional needs. They may suffer from severe physical symptoms, from social isolation and a sense of spiritual abandonment, and emotions such as sadness and anxiety, or feeling of deception, helplessness, anger and guilt. In some of them, the disease is rapidly progressive and they ultimately die. Their demanding care evokes intense feelings in health care providers, the more so since these incurable patients represent a challenge, which can be characterized as one of 'medical omnipotence'. It may be assumed that the way health care providers cope with these circumstances profoundly influences the way these patients are cared for. Attitudes regarding the emerging heterogeneous movement of palliative and supportive care and its different models of implementation can be viewed form this vantage point. Here we look at these interrelations and discuss the potential pitfalls if they are ignored and remain unexamined.
Topics: Health Knowledge, Attitudes, Practice; Humans; Neoplasms; Palliative Care; Social Support; Terminal Care
PubMed: 8777168
DOI: 10.1093/oxfordjournals.annonc.a010539 -
Journal of Pain and Symptom Management Feb 2018The International Association for Hospice and Palliative Care (IAHPC) is a membership-based organization dedicated to the development and improvement of hospice and...
The International Association for Hospice and Palliative Care (IAHPC) is a membership-based organization dedicated to the development and improvement of hospice and palliative care worldwide. The mission of IAHPC is to improve the quality of life of adults and children with life-threatening conditions and their families. The vision of IAHPC is universal access to high-quality palliative care, integrated into all levels of health care systems in a continuum of care with disease prevention, early diagnosis, and treatment, to assure that any patient's or family caregiver's suffering is relieved to the greatest extent possible. IAHPC focuses on the advancement of four areas of palliative care: education, access to medicines, health policies, and service implementation. IAHPC works on three levels: at the grass roots, developing resources, and educational strategies that enable health workers to provide cost-effective palliative care; at the national level, working with government representatives to improve national policies to ensure adequate care and access to medicines; and at the international level, advocating with the UN organizations to ensure that access to palliative care and to essential medicines for palliative care and pain treatment is stipulated and incorporated as an obligation of member states.
Topics: Health Policy; Health Services Accessibility; Hospice Care; Humans; International Agencies; Internationality; Internet; Palliative Care; Patient Advocacy
PubMed: 28797849
DOI: 10.1016/j.jpainsymman.2017.03.023 -
BMC Medical Education Nov 2016Over recent years there has been an increase in teaching of both palliative care and reflective practice in UK medical schools. The palliative care teaching at the...
BACKGROUND
Over recent years there has been an increase in teaching of both palliative care and reflective practice in UK medical schools. The palliative care teaching at the University of Cambridge School of Clinical Medicine is multi-faceted and involves students writing reflective essays after individually meeting patients approaching the end of life during their final year general practice and hospital medicine placements. This paper draws on two studies examining this teaching element to analyse what the students found valuable about it and to comment on the practice of meeting patients and subsequent reflective writing.
METHODS
Two studies have explored students' perceptions of these course components. The first was a thematic analysis of 234 reflective essays from 123 students written in 2007-2008, including examining what students wrote about the exercise itself. The second project involved a semi-structured questionnaire that students completed anonymously; this paper reports on the free text elements of that study [sample size =107]. Since similar themes were found in both studies, the coding structures from each project were compared and combined, enabling triangulation of the findings around what the students found valuable from the palliative care teaching involving meeting patients and reflective writing.
RESULTS
Overall, students reported that these components of the palliative care teaching are valuable. Four main themes were identified as aspects that students valued: (1) dedicated time with patients, (2) learning about wider elements of treatment and holistic care, (3) practicing communication skills, and (4) learning about themselves through reflective writing. Some students expressed a dislike for having to formally write a reflective essay.
CONCLUSION
It is possible to arrange for all of the medical students to individually meet at least two patients receiving palliative or end of life care. Students found these encounters valuable and many wrote about the benefit of formally writing about these experiences. Students reported finding this model useful in widening their skill-set and understanding of palliative care.
Topics: Curriculum; Education, Medical, Undergraduate; Empathy; Female; Focus Groups; Humans; Male; Palliative Care; Students, Medical; Terminal Care; United Kingdom; Writing
PubMed: 27887622
DOI: 10.1186/s12909-016-0827-6 -
BMC Palliative Care Oct 2020With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to... (Review)
Review
BACKGROUND
With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to alleviate suffering and to promote well-being for patients with progressive, incurable disease or injury. E-Health entails using of information and communication technology for healthcare provision. It is unclear to how patients experience use of eHealth technology within palliative care.
METHODS
The aim of this study was to describe patients' experiences of eHealth in palliative care. A systematic integrative review was performed using six databases: Cinahl Complete; MEDLINE; PubMed; Psychology and Behavioral Sciences Collection; Nursing and Allied Health; and PsycINFO. Twelve studies met the inclusion criteria of adult patients in palliative care, English language, published 2014-2019: comprising 397 patients. Six studies were from European countries, four from North America, one from South America and one from Oceania. Seven were feasibility or pilot studies.
RESULTS
The findings are synthesized in the main theme: E-health applications - promoting communication on patients' and families' terms, and three sub- themes: usability and feasibility of eHealth applications; symptom control and individualized care; and use of eHealth applications increased sense of security and patient safety. Patients' experiences were that eHealth promoted individualized care, sense of security, better symptom management and participation in care. Communication was facilitated by the inherent flexibility provided by technology.
CONCLUSIONS
E-Health applications seem promising in promoting equal, individualized care, and may be a tool to endorse accessibility and patient participation in palliative care settings. Indications are that eHealth communication resulted in patients and families receiving more information, which contributed to experiences of patient safety and feelings of security. At organizational and societal levels, eHealth may contribute to sustainable development and more efficient use of resources.
Topics: Humans; Palliative Care; Patient Satisfaction; Randomized Controlled Trials as Topic; Telemedicine
PubMed: 33054746
DOI: 10.1186/s12904-020-00667-1 -
Annals of Oncology : Official Journal... Apr 2012The data are relatively clear cut that palliative care improves quality of life and symptom control, improves quality of care by reducing aggressive but unsuccessful end... (Review)
Review
The data are relatively clear cut that palliative care improves quality of life and symptom control, improves quality of care by reducing aggressive but unsuccessful end of life care, and reduces costs. That should be an easy message to deliver to the public, health care administrators, payers, and governments. In fact, the arguments to develop palliative care services must be clear and concise, and make the clinical and financial case for the services that the palliative care team wants to deliver. Here, we discuss some of the types of models including consult services, outpatient programs, and inpatient units; the important components; some easy to use screening tools; components of the consultation team; a model medical record that increases "prompts" to do best palliative care; and data to report to supervisors.
Topics: Humans; Neoplasms; Palliative Care; Practice Guidelines as Topic
PubMed: 22628420
DOI: 10.1093/annonc/mds092 -
BMC Palliative Care Sep 2018Globally the state of palliative care research remains uncertain. Questions remain regarding impact, funding, and research priorities. Building upon previous research,...
BACKGROUND
Globally the state of palliative care research remains uncertain. Questions remain regarding impact, funding, and research priorities. Building upon previous research, this review examines palliative care research in Ireland and contributes to a wider international debate on the state of palliative care research.
METHODS
A systematic mapping review was undertaken. Eight bibliographic databases and thesis repositories were searched from May 2012 to April 2017. Palliative care related search terms were combined with "Ireland" or "Irish" to increase search sensitivity. Inclusion criteria were applied by two independent reviewers. Descriptive analysis was completed using IBM SPSS v23. Thematic analysis was undertaken using a data-driven approach to develop new themes.
RESULTS
In total, 808 studies were screened and 151 papers from 117 studies were included for review. The top two areas of research focus included: (1) specific groups, services, and settings (n = 70); and (2) identification, communication and education (n = 37). A diverse variety of research methods were used including mixed methods (25%), surveys (22%), interviews (20%), and reviews (17%). One randomised control trial was conducted. The predominance of research papers focused solely on health care professionals (n = 35%), and the community setting was the most frequent location for data collection (41%). The majority of data was collected across the two jurisdictions of the Republic of Ireland (ROI) and Northern Ireland (NI) (37%), and 23% of studies included data outside of Ireland and the UK. The most frequent sources of funding were: consortiums (n = 40); government (n = 24); and philanthropic bodies (n = 20). Forty percent (n = 60) of papers were either unfunded or did not acknowledge a funder.
CONCLUSIONS
There is a continued increase in palliative care research in Ireland with increased collaborative working nationally and internationally. The quantity and impact of research has increased from the previous review, which can be attributed to significant investment in research funding and collaborative networks. However, research gaps continue to exist including out of hours' care, physical and psychological symptom control, intervention studies, and the patient and family perspective. Areas for attention include the need to ensure knowledge exchange and demonstrate impact of the research on patient and family carer outcomes.
Topics: Humans; Ireland; Needs Assessment; Palliative Care; Research; Terminal Care
PubMed: 30261860
DOI: 10.1186/s12904-018-0364-7 -
BMC Palliative Care Feb 2016Despite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery... (Review)
Review
Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways.
BACKGROUND
Despite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review.
METHODS
Search results were screened by two reviewers. Eligible studies of adult patients with CHF or COPD published between 01/01/1995 and 31/12/2013 in Europe in 6 languages were included. Nine electronic databases were searched, 6 journals were hand-searched and citation tracking was also performed. For the analysis, a narrative synthesis was employed.
RESULTS
The search strategy revealed 26,256 studies without duplicates. From these, 19 studies were included in the review; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The involvement of a PC team was mentioned in 13/19 studies, the assessment of the patients' goals of care in 12/19 and the advance care planning in 11/19. Only 4/19 studies elaborated on aspects such as grief and bereavement care, 7/19 on treatment in the last hours of life and 8/19 on the continuation of goal adjustment.
CONCLUSION
The results illustrate that there is a growing awareness for the importance of integrated PC in patients with advanced CHF or COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated.
Topics: Advance Care Planning; Chronic Disease; Europe; Heart Failure; Humans; Palliative Care; Pulmonary Disease, Chronic Obstructive; Quality of Life
PubMed: 26872741
DOI: 10.1186/s12904-016-0089-4 -
Oncology (Williston Park, N.Y.) Apr 2002In the United States, hospice and palliative care are two distinct expressions of the hospice interdisciplinary team approach to end-of-life care, which originated in... (Review)
Review
In the United States, hospice and palliative care are two distinct expressions of the hospice interdisciplinary team approach to end-of-life care, which originated in Great Britain in the 1960s. The hospice movement developed largely as a home-care program and alternative to conventional care. Hospice regulations and reimbursement allowances limit services to patients who are expected to die within 6 months and who forego many common oncologic treatments. On the other hand, palliative care is a more recent academic, medically mainstream discipline that attempts to integrate the hospice approach into oncology and other areas of clinical medicine from the earliest phases of diagnosis and treatment. Palliative care entertains all appropriate forms of care at any phase of an illness. In this review, we describe the key goals of palliative care, which include excellent pain and symptom control, psychosocial and spiritual support for the patient and family, informed decision-making, and coordinated services across the continuum of care. We focus on selected recent developments that are important to oncology practice: the role of artificial nutrition; management of malignant small bowel obstruction; communication tasks, such as information sharing, recognition of patient preferences, advanced-care planning, and bereavement care; and ethical principles related to the hastening of death.
Topics: Bereavement; Ethics, Medical; Hospice Care; Humans; Neoplasms; Palliative Care
PubMed: 12017537
DOI: No ID Found