This report is a compilation of key findings and information on end of life care that was produced by NEoLCIN and its partners during 2014. It shows that there is a growing understanding within the health sector of what is important to people at the end of life. Key findings from the report include: the proportion of people dying at home or in care homes continues to increase; patients
(Edited publisher abstract)
This report is a compilation of key findings and information on end of life care that was produced by NEoLCIN and its partners during 2014. It shows that there is a growing understanding within the health sector of what is important to people at the end of life. Key findings from the report include: the proportion of people dying at home or in care homes continues to increase; patients with an Electronic Palliative Care Co-ordination System (EPaCCS) record and those receiving palliative care services such as hospice at home, Gold Standards Framework or Macmillan services are more likely to die in the place of their preference; two in five people with dementia die in hospital, indicating that the trend towards increasing hospital deaths for people living with dementia has reversed; factors most important to people at the end of their life were having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity; and more GPs are having conversations with people about their end of life care wishes but 25 per cent still say they have never initiated such a conversation.
(Edited publisher abstract)
Subject terms:
end of life care, palliative care, dementia, dignity, dying;
The current conceptual review sought to identify and describe how the end of life was conceptualized and operationalized in top-ranking, peer-reviewed social work journals considering the highly individualized and multidimensional experience of dying put forth by modern scholars and social work practitioners. An iterative content analysis of included articles (N = 103) revealed six themes within reported definitions and four themes within eligibility criteria. Definitions (n = 66) related to treatment responsiveness, the death process, dying, prognosis, admission to specific services, and old age. Eligibility criteria (n = 18) related to proxy assessment, diagnosis, prognosis, and functional ability assessments. Over one-third of included articles did not define what was meant by the end of life (36%; n = 37) and the majority did not include eligibility criteria (83%; n = 85). In conclusion, the complex lived experience of dying was not manifest within included articles raising important implications for research (e.g., measurement, meta-analysis) and social work practice (viz. service eligibility).
(Edited publisher abstract)
The current conceptual review sought to identify and describe how the end of life was conceptualized and operationalized in top-ranking, peer-reviewed social work journals considering the highly individualized and multidimensional experience of dying put forth by modern scholars and social work practitioners. An iterative content analysis of included articles (N = 103) revealed six themes within reported definitions and four themes within eligibility criteria. Definitions (n = 66) related to treatment responsiveness, the death process, dying, prognosis, admission to specific services, and old age. Eligibility criteria (n = 18) related to proxy assessment, diagnosis, prognosis, and functional ability assessments. Over one-third of included articles did not define what was meant by the end of life (36%; n = 37) and the majority did not include eligibility criteria (83%; n = 85). In conclusion, the complex lived experience of dying was not manifest within included articles raising important implications for research (e.g., measurement, meta-analysis) and social work practice (viz. service eligibility).
(Edited publisher abstract)
Subject terms:
literature reviews, death, dying, end of life care, older people, research, social work;
The main findings and recommendations from a Cochrane review are briefly reported. The review explored whether following end of life care pathways improved quality of life for patients and families and ensured they were treated with dignity. No studies fulfilled the inclusion criteria. It is recommended that well designed randomised controlled trials and other studies are need.
The main findings and recommendations from a Cochrane review are briefly reported. The review explored whether following end of life care pathways improved quality of life for patients and families and ensured they were treated with dignity. No studies fulfilled the inclusion criteria. It is recommended that well designed randomised controlled trials and other studies are need.
Subject terms:
patients, palliative care, quality of life, care pathways, dying, families, end of life care;
This briefing reports on the initial findings from a survey which asked doctors about decisions they had made about the provision, withdrawing or withholding of treatment at the end of life. It also contained questions about doctors’ attitudes to the legalisation of physician-assisted suicide and euthanasia. The purpose of this briefing is to give an overview of the main findings together with some commentary on some of the significant aspects, including 'double effect', the difference between public and medical opinion, and the use of continuous deep sedation.
This briefing reports on the initial findings from a survey which asked doctors about decisions they had made about the provision, withdrawing or withholding of treatment at the end of life. It also contained questions about doctors’ attitudes to the legalisation of physician-assisted suicide and euthanasia. The purpose of this briefing is to give an overview of the main findings together with some commentary on some of the significant aspects, including 'double effect', the difference between public and medical opinion, and the use of continuous deep sedation.
Subject terms:
palliative care, attitudes, decision making, doctors, dying, euthanasia;
Journal of Human Behavior in the Social Environment, 24(3), 2014, pp.281-295.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
... of terminal patients (n = 1,017) across settings. Only one study utilized a non-treatment control group. The remaining studies compared variations of program inclusions, settings, or quality of life scores across carcinoma site. The studies included indicated mixed outcomes related to the effect of hospice on quality of life in the dying, therefore the hypothesis of hospice and palliative end-of-life care positively impacting QoL scores in the dying is not clearly supported
(Edited publisher abstract)
A literature review was conducted to summarizes the impact of hospice and palliative end-of-life care on the self-assessed quality of life in terminally ill persons. For the review one electronic search was conducted through the ProQuest online bibliographic database and included MEDLINE, ProQuest Dissertations & Theses Full Text, PsycINFO, Social Service Abstracts, and Sociological Abstracts. Articles had to include at least one empirical self-assessed quality of life outcome measure administered at two separate points in time after admission to the hospice or palliative end-of-life care service. Studies were published in English between January of 2000 and December 2012. A total of six articles were included in the final review. Findings from included studies synthesize results of a variety of terminal patients (n = 1,017) across settings. Only one study utilized a non-treatment control group. The remaining studies compared variations of program inclusions, settings, or quality of life scores across carcinoma site. The studies included indicated mixed outcomes related to the effect of hospice on quality of life in the dying, therefore the hypothesis of hospice and palliative end-of-life care positively impacting QoL scores in the dying is not clearly supported
(Edited publisher abstract)
Subject terms:
terminal illness, palliative care, end of life care, quality of life, self-assessment, outcomes, dying, patients;
Quality in Ageing and Older Adults, 12(3), October 2011, pp.141-151.
Publisher:
Emerald
This paper offers an overview of various views of spirituality in relation to dying and death. The author discusses the content and import of a conference held in partnership between Staffordshire University and The National Spirituality and Mental Health Forum on the importance of considering life in the context of human mortality, and the meaning and purpose of our lives. This was one of a series of conferences on the theme of health and multi-belief systems. The conference and its format, including case studies is placed within current debates concerning the meaning of life in the context of death, what might be beyond “the grave” and the issue of assisted dying. In the light of this the author brings into the paper not just philosophical writings but also examples from novels and “popular culture” to highlight the intensity of the dialogue. He believes that considering the perspectives of a variety of major belief systems assists in relating to and caring for the increasing diversity of older people and their carers. As the discourse around assisted dying, belief systems and dignity come more to the fore, staff in health and social care will need time to discuss what the crucial
This paper offers an overview of various views of spirituality in relation to dying and death. The author discusses the content and import of a conference held in partnership between Staffordshire University and The National Spirituality and Mental Health Forum on the importance of considering life in the context of human mortality, and the meaning and purpose of our lives. This was one of a series of conferences on the theme of health and multi-belief systems. The conference and its format, including case studies is placed within current debates concerning the meaning of life in the context of death, what might be beyond “the grave” and the issue of assisted dying. In the light of this the author brings into the paper not just philosophical writings but also examples from novels and “popular culture” to highlight the intensity of the dialogue. He believes that considering the perspectives of a variety of major belief systems assists in relating to and caring for the increasing diversity of older people and their carers. As the discourse around assisted dying, belief systems and dignity come more to the fore, staff in health and social care will need time to discuss what the crucial issues are for those they serve.
Subject terms:
multicultural approach, religions, spirituality, dignity, dying, end of life care, ethnicity, euthanasia;
Health and Social Work, 35(2), May 2010, pp.109-117.
Publisher:
Oxford University Press
... dealing with the dying process and social support. Implications for social work practice and areas for future research are discussed. The authors comment that social workers, who encounter people with HF in a variety of practice settings, can play a keen role by focusing on the needs of people with HF, addressing and strengthening their ability to manage their condition, facilitating social support, and helping them to cope with the dying process. Greater attention to these issues in the social work literature is needed, with a particular focus on the role of racial and ethnic diversity as they pertain to people with HF facing end-of-life issues.
The authors conducted a systematic literature review, combined with thematic analysis of articles addressing the lived experience of end-of-life care for people with heart failure (HF). Fifteen studies that gave first-person accounts of heart failure were included. The majority of the studies involved one-to-one interviews with people who had HF. Age distribution among the studies was from 38 to 100 years. One hundred and eleven men and 59 women participated in the studies. The majority of the studies took place in European countries. The results suggested that people with HF face many challenges, including those associated with the formal health care system, life disruption, social isolation, symptoms, and uncertainty about prognosis and symptoms. Coping strategies include HF management, dealing with the dying process and social support. Implications for social work practice and areas for future research are discussed. The authors comment that social workers, who encounter people with HF in a variety of practice settings, can play a keen role by focusing on the needs of people with HF, addressing and strengthening their ability to manage their condition, facilitating social support, and helping them to cope with the dying process. Greater attention to these issues in the social work literature is needed, with a particular focus on the role of racial and ethnic diversity as they pertain to people with HF facing end-of-life issues.
Subject terms:
long term conditions, palliative care, terminal illness, user views, coping behaviour, dying, end of life care, heart diseases;
International Journal of Geriatric Psychiatry, 25(4), April 2010, pp.329-337.
Publisher:
Wiley
... used, with each study selected being screened independently by two reviewers using a standardised check list. Of the 68 papers included, only 12 were exclusively concerned living and dying with dementia at home, and 6 studies included evidence from people with dementia. The studies grouped into four broad categories: dementia care towards the end of life; palliative symptom management for people the particular challenges that dying with dementia poses, and that there is a need for further investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.
This paper reviews the literature for end-of-life care for older people with dementia living in the community. Reviewing studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included, a user representative group informed decisions on the breadth of literature used, with each study selected being screened independently by two reviewers using a standardised check list. Of the 68 papers included, only 12 were exclusively concerned living and dying with dementia at home, and 6 studies included evidence from people with dementia. The studies grouped into four broad categories: dementia care towards the end of life; palliative symptom management for people with dementia; predicting the approach of death for people with dementia; and decision-making. The few studies that developed dementia specific tools to guide end of life care and outcome measures demonstrated both what could be achieved, and how much more needs to be done. The authors concluded that research pertaining to end-of-life care for people with dementia has yet to develop interventions that address the particular challenges that dying with dementia poses, and that there is a need for further investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.
Subject terms:
intervention, older people, outcomes, palliative care, planning, community care, decision making, dementia, dying, end of life care;
The purpose of this article is to describe how the caring experience affects bereavement, with an emphasis on the relationship between challenging caring situations and difficult grieving processes, often referred to as ‘complicated grief’. The article starts with a brief summary of the general literature on caring and bereavement. It then defines complicated grief and discusses why some carers may struggle with the bereavement. Finally it offers practical suggestions for what professionals can do to help carers both before and after the death has occurred.
The purpose of this article is to describe how the caring experience affects bereavement, with an emphasis on the relationship between challenging caring situations and difficult grieving processes, often referred to as ‘complicated grief’. The article starts with a brief summary of the general literature on caring and bereavement. It then defines complicated grief and discusses why some carers may struggle with the bereavement. Finally it offers practical suggestions for what professionals can do to help carers both before and after the death has occurred.
Diversity in Health and Care, 6(1), March 2009, pp.23-29.
Publisher:
Radcliffe Publishing
Care homes for older people are major providers of end-of-life care. There are over half a million deaths a year in the UK, the vast majority occurring among older people, and one in five members of the population dies in a care home. Ensuring the provision of high quality end-of-life care in care homes for older people is an important healthcare issue, and has recently been scrutinised as part of an overall review of end-of-life care in the UK. It is acknowledged that little is known either about the numbers of people from black and minority ethnic groups who are resident in care homes, or about the extent to which their end-of-life care needs are addressed in line with their specific requirements. This paper summarises the current research evidence on cultural issues relating to ethnicity in end-of-life care in care homes, identifying the need for both monitoring and research data on the experiences and perspectives of residents from black and ethnic minorities, and their family carers.
Care homes for older people are major providers of end-of-life care. There are over half a million deaths a year in the UK, the vast majority occurring among older people, and one in five members of the population dies in a care home. Ensuring the provision of high quality end-of-life care in care homes for older people is an important healthcare issue, and has recently been scrutinised as part of an overall review of end-of-life care in the UK. It is acknowledged that little is known either about the numbers of people from black and minority ethnic groups who are resident in care homes, or about the extent to which their end-of-life care needs are addressed in line with their specific requirements. This paper summarises the current research evidence on cultural issues relating to ethnicity in end-of-life care in care homes, identifying the need for both monitoring and research data on the experiences and perspectives of residents from black and ethnic minorities, and their family carers.
Subject terms:
literature reviews, multicultural approach, older people, palliative care, black and minority ethnic people, care homes, dying, end of life care, ethnicity;