Search results for ‘Subject term:"end of life care"’ Sort:
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Open to all? Meeting the needs of lesbian, gay, bisexual and trans people nearing the end of life
- Authors:
- NATIONAL COUNCIL FOR PALLIATIVE CARE, CONSORTIUM OF LESBIAN, GAY, BISEXUAL AND TRANSGENDERED VOLUNTARY AND COMMUNITY ORGANISATIONS, PFLIX FILMS
- Publisher:
- National Council for Palliative Care
- Publication year:
- 2012
- Place of publication:
- London
This DVD accompanies the 'Open to all?' report on end of life care for lesbian, gay, bisexual and transgender people (LGBT). The film comprises the personal experiences of LGBT people nearing the end of life and those caring for them. It highlights the importance of meeting everyone's end of life needs appropriately and sensitively, whatever their sexual orientation and/or gender identity. (Edited publisher abstract)
First national VOICES survey of bereaved people: key findings report
- Author:
- SAUNDERS Cicely
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2012
- Pagination:
- 52p.
- Place of publication:
- London
This report provides an overview of the findings from the first ever national survey of bereaved relatives in England. The overall aims of the survey were to assess the quality of care delivered to people in the last three months of their lives and to assess variations in the quality of care delivered in different parts of the country and to different groups of patients. The survey was commissioned by the Department of Health in line with a commitment made in the End of Life Care Strategy (2008) to carry out surveys of bereaved relatives. A questionnaire was posted to the person who had informed the registrar of deaths about the death. A total of 22,292 people responded giving a response rate of 45.7%. Overall quality of care across all services and settings was reported for around 84% of patients. Of these 12% rated the care given as outstanding, 30% as excellent, 33% reported care as good, 14% as fair and 10% as poor. The highest proportions of ratings as outstanding were for patients who died in hospices (20%) and at home (19%) compared with 7% for hospitals, those who died of cancer (16% versus 9% for CVD and 11% other) and patients under 65 years (16% vs. 11% for those aged 80 or over).
End-of-life care for people with dementia from ethnic minority groups: a systematic review
- Authors:
- CONNOLLY Amanda, SAMPSON Elizabeth L., PURANDARE Nitin
- Journal article citation:
- Journal of the American Geriatrics Society, 60(2),, pp.351-360.
- Publisher:
- Blackwells Publishing
All of the 20, mainly quantitative, studies included in this review were conducted in the USA. Study quality was generally good but study methodology varied considerably. Overall, there was a tendency for ethnic minorities to choose more aggressive end-of-life care for patients with dementia. Future research focusing on the reasons for differences in end-of-life care for ethnic minorities with dementia in relation to patient and caregiver attitudes, and barriers within medical systems, is recommended.
A good death: the role of the local authority in end of life care
- Author:
- LUCAS Lauren
- Publisher:
- Local Government Information Unit
- Publication year:
- 2012
- Pagination:
- 17p.
- Place of publication:
- London
This report considers the role of local authorities in end of life care. The engagement of local authorities in this arena has been mixed; despite the fact that many of their core services, such as social care and housing, are important components of a high quality approach to end of life care. The survey received 135 responses, representing 91 out of 152 upper tier authorities. The replies showed that: six out of 10 respondents thought that their existing end of life care arrangements would not be sufficient in future. Four out of 10 thought that Health and Wellbeing Boards should lead on end of life care in future. Progress made on end of life care varied considerably across the country, but 60 per cent of respondents said that their authority intended to develop their role in promoting better end of life care in future. There were three main conclusions from the findings: there is a need for more work to raise awareness in local government in relation to end of life care; there are opportunities for local authorities to take greater ownership of end of life care; housing could still be better connected into this agenda.
Managing in the trenches of consumer care: the challenges of understanding and initiating the advance care planning process
- Authors:
- BAUGHMAN Kristin R., et al
- Journal article citation:
- Journal of Gerontological Social Work, 55(8), November 2012, pp.721-737.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This study aimed to better understand how community-based long-term care providers defined advance care planning, and their role in the process. It conducted 8 focus groups with 62 care managers, including social workers and registered nurses, providing care for Ohio's Medicaid waiver programme. Findings revealed that most consumers had little understanding of advance care planning. The care managers defined it broadly, including legal documentation, social aspects, medical considerations, ongoing communication, and consumer education. Care managers saw their roles as information providers, healthcare team members, and educators/coaches. The authors concluded that better education, resources, and coordination were needed to ensure that consumer preferences were realised. Implications for practice are discussed.
Causes of death among an urban homeless population considered by the medical examiner
- Authors:
- PAGE Stacey A., THURSTON Wilfreda E., MAHONEY Connie E.
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 8(3), July 2012, pp.265-271.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
Deaths among homeless people occur at rates significantly higher than the general population. Homeless people face illness and death in environments that may not appropriately meet their care needs or preferences. In order to be able to design programmes to address the needs of chronically and seriously ill homeless people, information on the numbers and causes of death must be examined. The aim of this study was to obtain information on the numbers and classifications of people identified as homeless in a large, Canadian urban centre. Data were requested from the Office of the Chief Medical Examiner for Alberta Justice, Canada, for people determined to be homeless in the period 2007-2009. A total of 132 deaths were reported. Drug and alcohol-related illness caused the highest number of deaths. These deaths were not only the result of overdoses, but also the consequence of long-term substance use leading to chronic conditions. The next main cause of death was classified as natural causes, and included coronary artery disease, pneumonia and cancer. For many of these people, end-of-life circumstances may have been improved through provision of palliative care delivered in a hospice setting.
Identifiable grief responses in persons with Alzheimer’s disease
- Authors:
- GRUETZNER Howard, ELLOR James W., BACK Nicole
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 8(2), April 2012, pp.151-164.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
Physicians and nurses of those in end-of-life care report that they frequently have residents for whom a primary loved one, such as a spouse, has died. Questions quickly arise as to whether or not to tell an older person with Alzheimers, how to tell the person, and how that person's response will impact the family. In two separate focus groups, one with 16 family members, and the other with 6 professionals, these questions were discussed with a group of family members and an interdisciplinary group of physicians, nurses, and social workers connected to long-term care facilities in one mid-sized community in Texas, United States. Findings revealed three patterns of response: self-threat described situations in which the individual responds to the announcement of the death by questioning who will take care of them now; substitution referred to the individual's inability to remember who has died and confused with a relative who died years ago; and metaphone, substitution of an object or unrelated item for the loss of a loved one. The authors suggest that those with dementia should be told in most circumstances that their loved one has died, but that behavioural interventions need to be designed to address the confusion can arise. Implications for practice are discussed.
End of life care
- Authors:
- GOODMAN Claire, FROGGATT Katherine, MATHIE Elspeth
- Publisher:
- NIHR School for Social Care Research
- Publication year:
- 2012
- Pagination:
- 65p.
- Place of publication:
- London
This review provides an overview of the range of research methods that have been commonly used in end of life care research and their relevance for social care. It is a resource and reference point for researchers who are about to undertake social care research with adults who are living with life-limiting illnesses or are dying, and with carers, family members and practitioners that support them in a range of settings. The review sets out a policy and service context for understanding end of life care research in social care and, using examples from relevant research, considers the advantages and disadvantages of different research methods and tools. The particular ethical challenges and practical issues that may arise are discussed along with some strategies and sources of support for address these. The review draws on the authors’ experiences of researching sensitive subjects in social care environments, specifically care homes and is informed by a review of the literature. Recommendations for research on adult social care practice are provided. These include; the value of user participation despite the challenges, the need for more research into costs and resources for end of life care in social care settings, the need for resources specific to social care to complement palliative care, and a requirement for more social care-appropriate theoretical frameworks.
'Choice is a small word with a huge meaning': autonomy and decision making at the end of life
- Authors:
- SUTTON Eileen, COAST Joanna
- Journal article citation:
- Policy and Politics, 40(2), April 2012, pp.211-226.
- Publisher:
- Policy Press
The United Kingdom End-of-Life Care Strategy, published in June 2008, recommends the identification, documentation and review of people's preferences for care and highlights the importance of choice at an individual level. This article, drawing on qualitative data, reflects on the complex range of interconnected factors impacting on older people's preferences and decision-making processes at the end of life. Interviews were conducted with 23 people over the age of 65 from the Bristol area of England – 7 people were living in residential care facilities, 5 receiving palliative care, and 11 from the general population. Findings revealed that, as older people began to consider not only themselves but also the impact on loved ones when making decisions, the pertinence of a relational conceptualisation of autonomy was considered. The impact of structural issues on the realisation of preferences is also explored. Implications for theory and practice are discussed.
Deprivation and death: variation in place and cause of death
- Authors:
- PRING Andy, VERNE Julia
- Publisher:
- National End of Life Care Intelligence Network
- Publication year:
- 2012
- Pagination:
- 44p.
- Place of publication:
- Bristol
Following on from a related report, Variations in Place of Death in England (2010), this report looks at patterns of death by socioeconomic deprivation and socioeconomic deprivation as a factor influencing end of life care. It presents analysis of data and examines the interaction between deprivation, sex and age group, and place and underlying cause of death. The key findings include: socioeconomic deprivation is a major determinant of where, when and how people die; there are fewer deaths in the least deprived quintile (20%) of the population; people living in the most deprived quintile were more likely to die in hospital than others; and people living in the most deprived quintile die younger, with twice as many deaths of people aged under 65 years in the most deprived quintile as in the least deprived quintile.