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National evidence shows that around 60% of patients would prefer to receive end of life care and die at home, but in 2005 in North Derbyshire only 20% of patients were supported to do so. This article discusses the tools used to improve end of life care services in the community and explores the enablers and barriers.

The growing numbers of terminally ill and dying in prison has high economic and moral costs as global correctional systems and the society at large. However, to date little is known about the extent to which palliative and end-of-life care is infused within global prison health care systems. The purpose of this paper is to fill a gap in the literature by reviewing and critically appraising the methods and major findings of the international peer-reviewed literature on palliative and end-of-life care in prison, identify the common elements of promising palliative and end-of-life services in prison, and what factors facilitate or create barrier to implementation.

A content analysis was conducted of the existing peer-reviewed literature on palliative and end-of-life care in prison. English-language articles were located through a comprehensive search of peer-reviewed journals, such as Academic Search Premier Literature databases using differing combinations of key word search terms, “prison,” “palliative care,” and “end-of-life care.” A total of 49 studies published between 1991 and 2013 met criteria for sample inclusion. Deductive and inductive analysis techniques were used to generate frequency counts and common themes related to the methods and major findings.

The majority (n=39) of studies were published between 2001-2013 in the USA (n=40) and the UK (n=7). Most were about US prison hospice programs (n=16) or barriers to providing palliative and end of life care in prisons (n=10). The results of the inductive analysis identified common elements of promising practices, which included the use of peer volunteers, multi-disciplinary teams, staff training, and partnerships with community hospices. Obstacles identified for infusing palliative and end-of-life care in prison included ethical dilemmas based on custody vs care, mistrust between staff and prisoners, safety concerns, concern over prisoners’ potential misuse of pain medication, and institutional, staff, and public apathy toward terminally ill prisoners and their human rights to health in the form of compassionate and palliative care, including the use of compassionate release laws.

Implications for future research that foster human rights and public awareness of the economic and moral costs of housing the sick and dying in prisons. More research is needed to document human rights violations as well as best practices and evidence-based practices in palliative and end-of-life care in prisons. Future studies should incorporate data from the terminally ill in prison, peer supports, and family members. Future studies also should employ more rigorous research designs to evaluate human rights violations, staff and public attitudes, laws and policies, and best practices. Quantitative studies that use experimental designs, longitudinal data, and multiple informants are needed. Qualitative data would allow for thick descriptions of key stakeholders experiences, especially of the facilitators and barriers for implementing policy reform efforts and palliative care in prisons.

This review provides a foundation on which to build on about what is known thus far about the human right to health, especially parole policy reform and infusing palliative and end-of-life care for the terminally ill and dying in prisons. This information can be used to develop or improve a new generation research, practice, policy, and advocacy efforts for that target terminally ill and dying in prison and their families and communities.

There are significant social implications to this review. From a human rights perspective, the right to freedom from torture and cruel and unusual punishment is a fundamental human right along with prisoners’ rights for an appropriate level of health care. These rights should be guaranteed regardless of the nature of their crime or whether they are in a prison placement. The information provided in this review can be used to educate and possible transform individual's and society's views toward the terminally ill and dying who are involved in the criminal justice system.

This paper extends the extant literature by using both quantitative and qualitative analysis methods to organize, summarize, and critically analyze the international literature on palliative care and end of life care in prison. This review is designed to increase awareness among the international community of the pain and suffering of the terminally ill in prison and the facilitators and barriers to providing them compassionate care while in custody.

The purpose of this paper is to trace the history of official policy on the regulation of care homes in respect of end of life care and to contrast this with the results of research on this important theme, not least in terms of what is required to support care home staff in relation to dying residents and their relatives. A central concern is to argue for the open recognition that care homes now cater primarily for frail people towards the end of their lives. Good end of life care and a good death could become a positive “selling point”. The author concludes that the system of regulation has broadly failed to address a good death or good end of life care in a residential home. Death talk should no longer need to be avoided in care homes. The research suggests that appropriate support for care home staff in relation to dying residents needs careful identification and investment. A cultural shift is required.

Following a review of policy documents on regulation and standards of care in residential homes and a subsequent review of the research literature on death and dying in care homes, the paper illuminates the contrast between the ambitious aims in policy documents with very varied practice in everyday care of frail residents.

The recent systems of regulation have broadly failed to address a good death or good end of life care in residential homes. Open acknowledgement of death and dying should not be avoided in care homes. Appropriate support for care home staff in relation to dying residents needs careful identification and investment.

The focus of this paper is to contrast official policy with everyday practice. Whilst policy documents suggest recognition of the importance of dignity and respect from dying residents, the research literature indicates great variation in the practice of everyday care.

The second in a new series about mental health in old age, this article reviews policies and research evidence on services for people with dementia at the end of their lives, and looks at future commissioning priorities

This chapter discusses challenges faced by older adult health-care consumers in obtaining access to responsive care from physicians relevant to a broad spectrum of health issues ranging from prevention to chronic illness and end-of-life care. Based on our prior research with community-dwelling elders (E. Kahana & B. Kahana, 2003, 2010), we propose a conceptual model of consumer self-advocacy for better access to effective health care in late life. We argue that older adults who are well informed and confident health-care partners and who involve their physicians in active dialogue will experience better care, and will be more satisfied with their health care. We present findings from our studies of cancer prevention and from our research focused on end-of-life care relevant to patient self-advocacy. We also discuss the role of educational interventions and of patient empowerment in facilitating greater access to responsive health communication and health care, particularly among elders who are disadvantaged and who have low health literacy.

The greater availability of life‐sustaining technology, such as cardiopulmonary resuscitation, and the medical, legal and moral pressures to use them, often enable the prolongation of lives of older people. The dying process can be extended regardless of quality of life. Further, there is much public debate on the increasing emphasis on individual rights and personal autonomy in the dying process. This qualitative study examined older people's perspectives on end‐of‐life decision‐making and advance care planning. A sample of 12 older people living in the community was recruited and studied in‐depth. A semi‐structured interview explored patients' conceptualisations of decision‐making in the later stages of life and the significant others they would like involved in the process. The data were analysed using ‘content analysis’. The resulting broad categories, themes and sub‐themes formed the foundation of an emerging model of older people talking about end‐of‐life care. Finally, results were discussed with regard to practice and policy development.

The purpose of this paper is to describe the delivery of facilitated action learning sets as an integral component of a multidisciplinary end-of-life care course.

The educational intervention described in this paper is delivered by specialist palliative care practitioners to those working with dying patients and their families in non-specialist settings. The programme consists of two components: the first taught/experience-based component takes place in a hospice. The second integral component involves action learning sets which are facilitated by specialist palliative care staff over a six-month period. This paper reports the challenges, learning and benefits of using action learning sets to improve end-of-life care.

Action learning sets provide support which enables staff to implement changes to end-of-life care. Participants in the successful action learning sets were motivated to change practice and identified themselves as change agents. Management support was vital to allow participants the authority to implement changes to practice.

Facilitators need to gain participant and management commitment to the action learning process before the programme begins if they are to be successful in achieving changes to end-of-life care.

Hospices and other health care organisations work in partnership to deliver this programme, and this paper demonstrates how action learning sets can increase mutual understanding and communication between specialist and non-specialist end-of-life care settings.

The purpose of this study is to report how the palliative and end of life care community in one region of England worked together to create a new model for integrated palliative and end of life care to respond to the challenges of changing demography, the need to reduce unnecessary hospital admissions of people nearing the end of life and to improve the quality of provision in line with current policy.

A co-production approach to system transformation was adopted involving 73 members of the palliative and end of life care community in one region of England.

A new model for the delivery of integrated palliative and end of life care services was produced. The breadth of membership of the co-production working party and constructive/collaborative working helped ensure a viable model was produced.

Although systems’ thinking perspectives can help address the challenges of large-scale transformation because they focus on promoting the value of relationships, recognise the nuances of context and the need to understand system behaviour over time, the potential for systems to benefit from this approach is limited by the complexity of the processes involved and the sheer number of issues to be addressed in practical terms by policy makers and change leaders.

The paper explores the contribution that theories of large-scale transformation can make to the design of palliative and end of life care services in health and social care.

This viewpoint paper focuses on the important role played by hospices in the UK in providing specialised end-of-life care for older people with complex needs – particularly for the growing number who choose to die at home. With demand for such care growing, the paper highlights the funding issues facing the independent hospice sector and the implications for hospices of receiving more state funding. The purpose of this paper is to highlight the challenges that hospices in the UK face in providing home-based palliative and end of life care for older people.

This a viewpoint paper informed by recent reports and research findings, as well as the author’s own work within the hospice sector.

The demand for specialised community-based and home-based palliative and end-of-life care is growing. The Covid-19 pandemic prompted wider discussion about what constitutes both “a good death” and good end-of-life care. This confirmed that most older people would prefer to end their lives free from pain, in familiar surroundings and not in hospital.

The specialised end-of-life care provided by hospices is rated highly by the regulator and the communities which they serve. In recent years, more attention has been given to providing “hospice at home” services, but coverage is limited largely due to lack of funding, the bulk of which comes from charitable fundraising. To provide a more equitable service, the fragility of the hospice funding model needs to be addressed.

If the state expands its funding of hospice care, it is important that charitable fundraising also continues to take place and is encouraged. This will help ensure that the good links between hospices and local stakeholders are maintained.

The funding of the hospice sector in the UK has been the subject of several reports both by governmental and non-governmental bodies, several in the last year. However, it is an issue of growing importance and the whole subject needs a fuller airing in academic circles.

The purpose of this study was to systematically review literature to investigate trends in compassionate release policies, facility implementation, barriers at both the incarcerated individual and institutional levels, as well as gaps in the literature. The absence of uniform and appropriate policies to address suitable interventions at the end-of-life has aggravated the challenges and issues facing health-care systems within a correctional facility. A response to address and alleviate these barriers is policies related to compassionate release, a complex route that grants eligible inmates the opportunity to die in their community. Despite the existence of compassionate release policies, only 4% of requests to the Federal Bureau of Prisons are granted, with evidence demonstrating similarly low rates among numerous state prison systems, signifying the underuse of these procedures as a vital approach to decarceration.

A systematic review was completed using preferred reporting items for systematic reviews and meta-analyses guidelines. Centre for Agriculture and Biosciences International Abstracts, Cumulative Index to Nursing and Allied Health Literature, Cochrane Library, Education Resources Information Center, Google Scholar, MEDLINE, PsycINFO, PubMed, Social Services Abstracts and Social Work Abstracts were searched from inception to March 2021. Inclusion criteria included: the compassionate release policy (or related policy) is implemented in the USA; reported qualitative and/or quantitative outcomes; and reported original data.

Twenty studies formed the final data set. Data analysis revealed four main themes: language barriers, complexities of eligibility criteria, over-reliance on prognostication and social stigma. Barriers to inmates’ access to compassionate release policies include unclear or technical language used in policy documents. Eligibility criteria appear to vary across the country, including disease prognoses and the ability to predict terminal declines in health, creating confusion amongst inmates, lawyers and review boards. Stigmas surrounding the rights of incarcerated individuals frequently influence policymakers who experience pressure to maintain a punitive stance to appease constituents, thus discouraging policies and interventions that promote the release of incarcerated individuals.

Further research is vital to strengthen the understanding of compassionate release policies and related barriers associated with accessing various types of early parole. To promote social justice for this marginalized population, end-of-life interventions in corrections need to be consistently evaluated with outcomes that improve care for dying inmates.

Within correctional facilities, correctional health-care workers should play an integral role in influencing prison and medical staff attitudes toward dying inmates by providing an understanding of how to effectively support this vulnerable population. Social workers should participate in research that focuses on effective guidelines for correctional facilities to provide compassionate end-of-life care for inmates.

Racial disparities in the US criminal justice system are prevalent and well documented, as individuals of color are arrested far out of proportion to their share of all individuals in the USA. This particular population is thus challenged with poor access to and quality of health care in corrections. Correctional health-care workers can play an integral role in influencing policymakers, as well as prison and medical staff attitudes toward dying inmates by providing an understanding of how to effectively support this vulnerable population.

Currently, there are no published research articles that provide a systematic review of compassionate release policies in the USA.