Journal of Long-Term Care, October 2020, pp.131-143. Online only
Publisher:
King's College London
Place of publication:
London
Context: Interdisciplinary long-term care staff are being challenged with increasing numbers of resident deaths as well as complex resident and family needs. Studies warn that staff responses to the stress generated by residents’ deaths can lead to increased ill health, sick time, burnout, and attrition. Objectives: To alleviate and prevent workplace stress and burnout in staff related to long-term care resident deaths. Methods: Participatory action research design. Qualitative individual interviews and focus groups were carried out within five long-term care homes, Vancouver, British Columbia, Canada. Findings: Two key themes emerged: Challenges Staff Experienced and Supporting Action Strategies. Challenges are reported under five sub-themes: 1) Differing Expectations, 2) Communication, 3) Acknowledgement, 4) Support, and 5) Education. Supporting Action Strategies to minimize the impact of resident death on staff are presented under four sub-themes: 1) the Individual: Practice self-care, awareness, mindfulness; 2) Team: Enhance end-of-life comfort for residents, strengthen support for families, maximize the use of palliative and spiritual care; 3) Organization: Nurture supportive leadership, improve communication, education, resources and 4) Higher learning: Build palliative care/emotional preparation into the curriculum and promote long-term care as a specialist area of healthcare. Limitations: Results may not generalize to other practice contexts; long-term care homes studied are part of a faith-based organization. Implications: Long-term care policy and system changes are needed to support interdisciplinary care staff and provide them with tools, resources, and supports to prevent burnout and cope with the increasing stress of working in long-term care.
(Edited publisher abstract)
Context: Interdisciplinary long-term care staff are being challenged with increasing numbers of resident deaths as well as complex resident and family needs. Studies warn that staff responses to the stress generated by residents’ deaths can lead to increased ill health, sick time, burnout, and attrition. Objectives: To alleviate and prevent workplace stress and burnout in staff related to long-term care resident deaths. Methods: Participatory action research design. Qualitative individual interviews and focus groups were carried out within five long-term care homes, Vancouver, British Columbia, Canada. Findings: Two key themes emerged: Challenges Staff Experienced and Supporting Action Strategies. Challenges are reported under five sub-themes: 1) Differing Expectations, 2) Communication, 3) Acknowledgement, 4) Support, and 5) Education. Supporting Action Strategies to minimize the impact of resident death on staff are presented under four sub-themes: 1) the Individual: Practice self-care, awareness, mindfulness; 2) Team: Enhance end-of-life comfort for residents, strengthen support for families, maximize the use of palliative and spiritual care; 3) Organization: Nurture supportive leadership, improve communication, education, resources and 4) Higher learning: Build palliative care/emotional preparation into the curriculum and promote long-term care as a specialist area of healthcare. Limitations: Results may not generalize to other practice contexts; long-term care homes studied are part of a faith-based organization. Implications: Long-term care policy and system changes are needed to support interdisciplinary care staff and provide them with tools, resources, and supports to prevent burnout and cope with the increasing stress of working in long-term care.
(Edited publisher abstract)
Subject terms:
long term care, death, stress, care workers, dying, multidisciplinary teams, staff views, end of life care;
Journal of Social Work in End-of-Life and Palliative Care, 14(2-3), 2018, pp.209-224.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
As lesbian, gay, bisexual, transgender, and queer (LGBTQ+) communities age, many individuals expect a need to enter the long-term care system toward the end of life. Not unlike most ageing Canadians, this anticipation is met with concern and fear. However, previous research suggests that older LGBTQ + individuals have unique fears often related to personal safety and discrimination. This qualitative study examined the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Data were collected from three focus groups in Ontario, Canada, and analysed using inductive thematic analysis. Specific and frequent reference to fear of entering long-term care homes was common across all focus groups, as participants anticipated: social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The results from this study, therefore, emphasise the need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to work toward allaying fears and creating supportive and inclusive long-term care environments.
(Edited publisher abstract)
As lesbian, gay, bisexual, transgender, and queer (LGBTQ+) communities age, many individuals expect a need to enter the long-term care system toward the end of life. Not unlike most ageing Canadians, this anticipation is met with concern and fear. However, previous research suggests that older LGBTQ + individuals have unique fears often related to personal safety and discrimination. This qualitative study examined the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Data were collected from three focus groups in Ontario, Canada, and analysed using inductive thematic analysis. Specific and frequent reference to fear of entering long-term care homes was common across all focus groups, as participants anticipated: social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The results from this study, therefore, emphasise the need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to work toward allaying fears and creating supportive and inclusive long-term care environments.
(Edited publisher abstract)
Subject terms:
dying, long term care, end of life care, older people, LGBT people, service users, user views, needs, ageing;
... and implement appropriate care to meet the needs of the dying residents. It also sets out conclusions and recommendations.
The Greater Manchester End of Life Care Initiative aims to deliver education, training and improvement in the quality of care received by older adults with dementia in a care setting when coming to the end of their lives. This evaluation aimed to assess perceptions of staff on the role and appropriateness of the use of the Gold Standards Framework and Liverpool Care Pathway tools in the individual care of patients and/or residents with dementia, the experience and role of carers and family members with the care service, and the job satisfaction of the multidisciplinary team in a range of long term care settings in the Greater Manchester area. A case study approach was used, so that tools and interventions could be explored and compared across care settings, together with surveys, interviews, focus groups, and documents and records. The report describes the evaluation study and its results. It notes an emerging picture of overall staff confidence in the planning and implementation of end of life care for people with advanced dementia, and the general agreement of care staff that the Gold Standards Framework and Liverpool Care Pathway tools enable staff to assess, monitor and implement appropriate care to meet the needs of the dying residents. It also sets out conclusions and recommendations.
Subject terms:
long term care, older people, patients, palliative care, care homes, care pathways, dementia, dying, end of life care, evaluation;
Journal of Social Work in End-of-Life and Palliative Care, 4(4), 2008, pp.333-357.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
Three focus groups consisting of 3 to 5 social workers from long-term care facilities in North Carolina were conducted using a semi-structured interview guide to examine how they viewed their roles with dying residents. Each group included social workers from both nursing homes and assisted living facilities and some social workers who were responsible for residents at both levels of care.
Three focus groups consisting of 3 to 5 social workers from long-term care facilities in North Carolina were conducted using a semi-structured interview guide to examine how they viewed their roles with dying residents. Each group included social workers from both nursing homes and assisted living facilities and some social workers who were responsible for residents at both levels of care. Of the 11 focus group participants, 9 were female. Nine reported some training in care for persons at the end of life. The study found that long-term care social workers had difficulty articulating a clear role in dealing with residents and families of residents at the end of life, desired to become more involved, and encountered barriers associated with involvement. They were most likely to become involved at the request of nursing staff. Social workers also found hospice involvement positive, but expressed some difficulty integrating this service. Time and space were elements that influenced involvement. The authors comment that lower social worker to resident ratios, clearer articulation of the social work role, and additional end-of-life content in social work education are recommendations that are supported by these data.
Subject terms:
long term care, nursing homes, older people, palliative care, professional role, social workers, care homes, dying, focus groups;
... status, family involvement, advance care planning, most life-prolonging interventions, and hospice use were noted. Dying residents with dementia tended to die less often in a hospital, have less shortness of breath, receive more physical restraints and sedative medication, and use emergency services less frequently on the last day of life. Persons with dementia dying in RC-AL settings tended to have more skin ulcers and poorer hygiene care than nondemented persons in RC-AL settings. In comparison with persons dying with dementia in NHs, those in RC-AL settings tended to be restrained less often, have emergency services called more often on the day of death, and have family more satisfied with physician communication. Implications: These results suggest that the overall quality of care for persons dying with dementia in long-term-care settings may not differ markedly from that provided to persons who are cognitively intact. Similarly, large discrepancies in the overall quality of palliative care for persons with dementia in RC-AL facilities and NHs were not identified. However, numerous specific areas for care improvement were noted.
After-death interviews with staff who had cared for 422 decedents with dementia and 159 who were cognitively intact and received terminal care in U.S. nursing homes (NHs) or residential care–assisted living (RC-AL) settings were conducted. Family caregiver interviews for 293 decedents were also conducted. No differences between decedents with and without dementia in terms of pain, psychosocial status, family involvement, advance care planning, most life-prolonging interventions, and hospice use were noted. Dying residents with dementia tended to die less often in a hospital, have less shortness of breath, receive more physical restraints and sedative medication, and use emergency services less frequently on the last day of life. Persons with dementia dying in RC-AL settings tended to have more skin ulcers and poorer hygiene care than nondemented persons in RC-AL settings. In comparison with persons dying with dementia in NHs, those in RC-AL settings tended to be restrained less often, have emergency services called more often on the day of death, and have family more satisfied with physician communication. Implications: These results suggest that the overall quality of care for persons dying with dementia in long-term-care settings may not differ markedly from that provided to persons who are cognitively intact. Similarly, large discrepancies in the overall quality of palliative care for persons with dementia in RC-AL facilities and NHs were not identified. However, numerous specific areas for care improvement were noted.
Subject terms:
long term care, nursing homes, older people, palliative care, advance care planning, care homes, dementia, dying;
Once regarded as taboo, it is now claimed that we are a death-obsessed society. The face of death in the 21st century, brought about by cultural and demographic change and advances in medical technology, presents health and social care practitioners with new challenges and dilemmas. By focusing on predominant patterns of dying; global images of death; shifting boundaries between the public changing funeral and burial practices, new stigmas such as drug-related bereavements, are highlighted, and theories of dying and bereavement re-examined in their context. The concluding chapters incorporate recent case studies into an exploration of the meanings and shape of holistic and integrated care
Once regarded as taboo, it is now claimed that we are a death-obsessed society. The face of death in the 21st century, brought about by cultural and demographic change and advances in medical technology, presents health and social care practitioners with new challenges and dilemmas. By focusing on predominant patterns of dying; global images of death; shifting boundaries between the public and the private; and cultural pluralism, the author looks at the way death is handled in contemporary society and the sensitive ethical and practical dilemmas facing nurses, social workers, doctors and chaplains. This book brings together perspectives from social science, health-care and pastoral theology to assist the reader in understanding and negotiating this 'new death'. End-of-life care and old age, changing funeral and burial practices, new stigmas such as drug-related bereavements, are highlighted, and theories of dying and bereavement re-examined in their context. The concluding chapters incorporate recent case studies into an exploration of the meanings and shape of holistic and integrated care
Subject terms:
long term care, older people, social care, social care provision, terminal illness, bereavement, drug misuse, dying, end of life care;
Ageing and Society, 24(2), March 2004, pp.235-256.
Publisher:
Cambridge University Press
This paper focuses on the circumstances of death and dying in old age. It considers the ways in which social policies and social gerontology reflect the values of independence, autonomy and citizenship, and it considers the implication of these values for older people who are dependent on others for care and support at the end-of-life. It discusses the complexity of the relationship between ageing and dying, by exploring recent research from the fields of social gerontology and the sociology of death and dying. Arguing that a long-term perspective is required to understand fully the circumstances of older people's deaths, it analyses the third age/fourth age dichotomy as a conceptual model. The task of developing knowledge about the links between ageing and dying requires consideration
This paper focuses on the circumstances of death and dying in old age. It considers the ways in which social policies and social gerontology reflect the values of independence, autonomy and citizenship, and it considers the implication of these values for older people who are dependent on others for care and support at the end-of-life. It discusses the complexity of the relationship between ageing and dying, by exploring recent research from the fields of social gerontology and the sociology of death and dying. Arguing that a long-term perspective is required to understand fully the circumstances of older people's deaths, it analyses the third age/fourth age dichotomy as a conceptual model. The task of developing knowledge about the links between ageing and dying requires consideration of moral and ethical principles. The article examines the conceptual frameworks developed by feminists who argue for an ethics of care as a central analytic referent in social policy. The feminist ethics-of-care approach provides a powerful critique of the moral framework of independence and autonomy as characterised in contemporary policies and practices. Feminist ethicists argue that the inter-relatedness of human beings and the importance of the social context have been overlooked in the preoccupation with individual rights - as reflected more generally in policies and social life. It is argued in the paper that the need for care at the end-of-life highlights these shortcomings. The feminist ethics of care has considerable potential to illuminate our understanding of dependency and care, and to generate both new approaches to policy and practice in health and social care and theoretical perspectives in gerontology.
Subject terms:
long term care, policy formulation, terminal illness, ageing, carers, citizenship, death, dying, ethics, feminist theory;
Journal of Social Work in Long-Term Care, 2(3/4), 2003, pp.245-267.
Publisher:
Taylor and Francis
Place of publication:
London
... a sense of community in a place where no one wants to be, to be a community that is more about living than about dying. Prior to the change process, The Mount maintained a traditional, medical model of operations designed to achieve staff efficiencies and meet residents' medical needs within a mission of compassionate care. Studies to measure residents' daily levels of activity and engagement helped
In 1991, a strategic planning team at a senior-living care facility in Seattle, Washington, began a process of organizational and cultural change. The process transformed both the philosophy and model of care, as well as the physical environment of Providence Mount St. Vincent. In 1998, a New York Times writer described the results she observed within and around the nearly 300,000-square-foot building constructed in 1924: The Mount, as those who live there call it, is widely regarded to be what many Americans consider an impossibility-a good nursing home. That is to say, in an industry freighted with the dread of old age, disability and loneliness, and periodically tainted by scandal and abuse, The Mount has found ways to be a home to people who can no longer care for themselves, to provide a sense of community in a place where no one wants to be, to be a community that is more about living than about dying. Prior to the change process, The Mount maintained a traditional, medical model of operations designed to achieve staff efficiencies and meet residents' medical needs within a mission of compassionate care. Studies to measure residents' daily levels of activity and engagement helped determine quality of life within a medical model setting. In a typical U.S. nursing home, residents spend 25-35 percent of their day engaged in some activity. Based on a series of behavioral studies at The Mount in the early 1990s conducted with approximately 1.400 observations of resident activity, a typical waking day in the life of a nursing home resident included engaging in any type of activity for 32 percent of the time. After The Mount's strategic planning team introduced a "neighborhood" concept for people receiving nursing care, the measure of engagement jumped from 32 to 42 percent and the death curve reversed and improved by 83 percent. For the past five years, The Mount has worked with and through a national group called the Pioneer Network to serve as a culture change resource and learning laboratory for other senior-living care providers around the country. This article describes the journey and outcomes of culture change in this facility. (Copies of this article are available from: Haworth Document Delivery Centre Haworth Press Inc., 10 Alice Street Binghamton, NY 13904-1580)
Subject terms:
medical model, long term care, models, nursing homes, older people, organisational structure, residential care, residents, social work, carers, case studies, building design, dying, empathy;