Search results

1 – 10 of over 69000
Article
Publication date: 1 August 2007

Alice Shiner and Jennifer Stothard

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…

Abstract

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.

Details

Journal of Integrated Care, vol. 15 no. 4
Type: Research Article
ISSN: 1476-9018

Keywords

Article
Publication date: 9 September 2014

Tina Maschi, Suzanne Marmo and Junghee Han

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…

1147

Abstract

Purpose

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.

Design/methodology/approach

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.

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.

Research limitations/implications

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.

Practical implications

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.

Social implications

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.

Originality/value

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.

Details

International Journal of Prisoner Health, vol. 10 no. 3
Type: Research Article
ISSN: 1744-9200

Keywords

Article
Publication date: 9 September 2013

Randall Smith

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

Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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.

Originality/value

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.

Details

Quality in Ageing and Older Adults, vol. 14 no. 3
Type: Research Article
ISSN: 1471-7794

Keywords

Article
Publication date: 1 December 2008

Catherine Evans and Claire Goodman

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…

Abstract

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

Details

Journal of Integrated Care, vol. 16 no. 6
Type: Research Article
ISSN: 1476-9018

Keywords

Book part
Publication date: 12 October 2011

Eva Kahana, Boaz Kahana, Loren Lovegreen, Jeffrey Kahana, Jane Brown and Diana Kulle

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…

Abstract

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.

Details

Access to Care and Factors that Impact Access, Patients as Partners in Care and Changing Roles of Health Providers
Type: Book
ISBN: 978-0-85724-716-2

Keywords

Book part
Publication date: 19 July 2018

Harold Braswell

This article intervenes in the debate, among US disability rights advocates, about physician-assisted suicide (PAS). Through an ethnographic study, I situate this debate in the…

Abstract

This article intervenes in the debate, among US disability rights advocates, about physician-assisted suicide (PAS). Through an ethnographic study, I situate this debate in the context of the dominant form of end-of-life care in the US hospice. Based on this analysis, I argue that PAS should be an issue of secondary concern to disability rights advocates, and that their primary concern, at the end-of-life, should be the improvement of US hospice care. By thus “putting the ‘right to die’ in its place,” they can achieve consensus among themselves and leverage this consensus to achieve the most substantial advancement of disability rights.

Details

Studies in Law, Politics, and Society
Type: Book
ISBN: 978-1-78756-208-0

Keywords

Article
Publication date: 2 May 2017

Karen Gillett, Liz Reed and Liz Bryan

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.

Abstract

Purpose

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.

Design/methodology/approach

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.

Findings

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.

Practical implications

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.

Originality/value

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.

Details

Leadership in Health Services, vol. 30 no. 2
Type: Research Article
ISSN: 1751-1879

Keywords

Article
Publication date: 1 September 2002

Tushna Vandrevala, Sarah Hampson and Theopisti Chrysanthaki

The greater availability of life‐sustaining technology, such as cardiopulmonary resuscitation, and the medical, legal and moral pressures to use them, often enable the…

Abstract

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 endoflife 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 endoflife care. Finally, results were discussed with regard to practice and policy development.

Details

Quality in Ageing and Older Adults, vol. 3 no. 3
Type: Research Article
ISSN: 1471-7794

Keywords

Open Access

Abstract

Details

How Gay Men Prepare for Death
Type: Book
ISBN: 978-1-83909-587-0

Article
Publication date: 13 October 2023

Peter Scourfield

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…

Abstract

Purpose

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.

Design/methodology/approach

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

Findings

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.

Practical implications

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.

Social implications

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.

Originality/value

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.

Details

Working with Older People, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 1366-3666

Keywords

1 – 10 of over 69000