International Journal of Care and Caring, 4(4), 2020, pp.595-598.
Publisher:
Policy Press
Dying alone has never been a normative event in our society. The coronavirus pandemic has precipitously created an environment of fear and panic, leading to the elimination of the dying vigil as a societal spiritual norm. Many patients have died, and continue to die, alone in their beds without their families or loved ones. Protection of healthcare workers and mitigation of legal liability
(Edited publisher abstract)
Dying alone has never been a normative event in our society. The coronavirus pandemic has precipitously created an environment of fear and panic, leading to the elimination of the dying vigil as a societal spiritual norm. Many patients have died, and continue to die, alone in their beds without their families or loved ones. Protection of healthcare workers and mitigation of legal liability are purported to be valid justifications for policies that have implemented these restrictions. Yet, historically, the death vigil has been a highly valued event, and seen as an act of community and a spiritual event, in which the person is recognised as more than just a note in the medical record. Two institutions developed policies that respect the death vigil while simultaneously remaining postured to protect healthcare workers. These institutions defied the current trend observed in many clinical environments and refused to let patients die alone.
(Edited publisher abstract)
Subject terms:
Covid-19, dying, end of life care, ethics, residential care;
This report aims to raise awareness of the need for good palliative and end of life care in all care homes. Palliative care is about ensuring a good quality of life for both residents and their families at every stage of a life limiting illness which can be from diagnosis onwards. One part of palliative care is care given towards the end of life, that is, care given in the last few months, days and hours of a person’s life. This report reflects findings between April 2007 and the end of March 2008 during 1,036 inspections and three investigations into complaints. The report focuses on whether staff in care homes have an understanding of what palliative and end of life care is, and how well they are delivering palliative and end of life care to residents and their families. Inspections showed that 587 (57%) of the care homes in the sample understood the importance of providing palliative and end of life care. Examples of good practice are given throughout the report. However the report found many care homes had fallen short of best practice. Recommendations are made.
This report aims to raise awareness of the need for good palliative and end of life care in all care homes. Palliative care is about ensuring a good quality of life for both residents and their families at every stage of a life limiting illness which can be from diagnosis onwards. One part of palliative care is care given towards the end of life, that is, care given in the last few months, days and hours of a person’s life. This report reflects findings between April 2007 and the end of March 2008 during 1,036 inspections and three investigations into complaints. The report focuses on whether staff in care homes have an understanding of what palliative and end of life care is, and how well they are delivering palliative and end of life care to residents and their families. Inspections showed that 587 (57%) of the care homes in the sample understood the importance of providing palliative and end of life care. Examples of good practice are given throughout the report. However the report found many care homes had fallen short of best practice. Recommendations are made.
Subject terms:
palliative care, quality assurance, residential care, dying, end of life care;
Journal of Applied Research in Intellectual Disabilities, 26(3), 2013, pp.215-230.
Publisher:
Wiley
Research on staffed housing for people with intellectual disability has identified the challenges in achieving positive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying. In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability. The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff
(Publisher abstract)
Research on staffed housing for people with intellectual disability has identified the challenges in achieving positive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying. In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability. The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff from ‘being there’ with individuals over those phases.
(Publisher abstract)
Subject terms:
learning disabilities, death, dying, residential care, end of life care, staff, supported housing;
British Journal of General Practice, 60(573), April 2010, pp.275-282.
Publisher:
Royal College of General Practitioners
... of death. Over two-thirds were living in the community when last interviewed less than 12 months before death, but less than one-third who had lived at home died there (less than one-fifth in sheltered housing). Care homes were the usual address of most people dying there (77% in residential homes, 87% in nursing homes) but 15% of deaths in acute hospital came from care homes. The authors conclude
Current UK policy is to enable people to be cared for until death where they would prefer. Deaths are rising fastest among the oldest old and not only are their preferences difficult to asses, but data on their transitions in place of care at the end of life are scarce. This population-based cohort study examined the place of residence or care less than a year before death, place of death, and mapped individual changes between the two. A retrospective analysis was undertaken of prospective data from males and females aged 85 years or more at death who died within a year of taking part in the Cambridge City over-75s Cohort (CC75C) study (n = 320). The results show that only 7% changed their address in their last year of life, yet 52% died somewhere other than their usual address at the time of death. Over two-thirds were living in the community when last interviewed less than 12 months before death, but less than one-third who had lived at home died there (less than one-fifth in sheltered housing). Care homes were the usual address of most people dying there (77% in residential homes, 87% in nursing homes) but 15% of deaths in acute hospital came from care homes. The authors conclude that these findings add weight to calls for improved end-of-life care in all settings, regardless of age, to avoid unnecessary transfers.
Subject terms:
palliative care, hospital admission, residential care, very old people, death, dying;
Quality in Ageing and Older Adults, 14(3), 2013, pp.205-217.
Publisher:
Emerald
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 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.
(Publisher 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.
(Publisher abstract)
Subject terms:
death, dying, residential care, care homes, policy, older people, regulation, standards;
Journal of Intellectual Disability Research, 54(12), December 2010, pp.1067-1077.
Publisher:
Wiley
This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities accommodating persons with intellectual disabilities, and to describe training, education and quality assessments of end-of-life care. A cross-sectional mail survey was conducted among general directors of all 140 residential care facilities accommodating persons with intellectual disabilities in Flanders, Belgium. The institutions were also asked to provide a copy of their end-of-life care policy documents for content analysis. Of the 140 institutions, 84 completed the questionnaire and 25 provided 45 policy documents. Presence of policies on specific end-of-life decisions with a possible life-shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life-prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end-of-life decisions with a possible life-shortening effect are mentioned but rarely elaborated on. Few documents incorporate the distinctive features and needs of persons with intellectual disabilities regarding end-of-life care. Half of the institutions trained and educated their professional care providers in some aspects of end-of-life care while one-third assessed the satisfaction of residents and families on several of these aspects. The article concludes that the presence of end-of-life care policies is low in Flemish residential care facilities and their content is not very specific for persons with intellectual disabilities.
This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities accommodating persons with intellectual disabilities, and to describe training, education and quality assessments of end-of-life care. A cross-sectional mail survey was conducted among general directors of all 140 residential care facilities accommodating persons with intellectual disabilities in Flanders, Belgium. The institutions were also asked to provide a copy of their end-of-life care policy documents for content analysis. Of the 140 institutions, 84 completed the questionnaire and 25 provided 45 policy documents. Presence of policies on specific end-of-life decisions with a possible life-shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life-prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end-of-life decisions with a possible life-shortening effect are mentioned but rarely elaborated on. Few documents incorporate the distinctive features and needs of persons with intellectual disabilities regarding end-of-life care. Half of the institutions trained and educated their professional care providers in some aspects of end-of-life care while one-third assessed the satisfaction of residents and families on several of these aspects. The article concludes that the presence of end-of-life care policies is low in Flemish residential care facilities and their content is not very specific for persons with intellectual disabilities.
Subject terms:
learning disabilities, palliative care, policy, residential care, terminal illness, decision making, dying, end of life care;
RICH Shayna E., WILLIAMS Christianna S., ZIMMERMAN Sheryl
Journal article citation:
Gerontologist, 50(1), February 2010, pp.112-120.
Publisher:
Oxford University Press
There has been an increasing recognition of the ongoing role of family caregivers in nursing homes, where family members often believe it is their responsibility to oversee care for their relatives. As such, this paper attempts to identify differences in perspectives that may complicate the process of joint decision making at the end of life, and determine the agreement of family and staff perspectives about end-of-life experiences in nursing homes and residential care and assisted living communities. This cross-sectional study, from 113 long-term care facilities, examined agreement in 336 family-staff pairs of post death telephone interviews, conducted as part of the Collaborative Studies of Long-Term Care. Chance-adjusted family/staff agreement was poor for: expectation of death within weeks, with 67% agreement; course of illness (63%); symptom burden (60%); and familiarity with resident’s physician (59%). Staff were more likely than family to expect death (70% vs. 52%) and less likely to report low symptom burden (40% vs. 47%). Staff involvement in care related to concordance and perspectives of adult children were more similar to those of staff than were other types of family members. The authors conclude that family and staff perspectives about end-of-life experiences may differ substantially, and that efforts should be made to improve family-staff communication and interaction for joint decision making.
There has been an increasing recognition of the ongoing role of family caregivers in nursing homes, where family members often believe it is their responsibility to oversee care for their relatives. As such, this paper attempts to identify differences in perspectives that may complicate the process of joint decision making at the end of life, and determine the agreement of family and staff perspectives about end-of-life experiences in nursing homes and residential care and assisted living communities. This cross-sectional study, from 113 long-term care facilities, examined agreement in 336 family-staff pairs of post death telephone interviews, conducted as part of the Collaborative Studies of Long-Term Care. Chance-adjusted family/staff agreement was poor for: expectation of death within weeks, with 67% agreement; course of illness (63%); symptom burden (60%); and familiarity with resident’s physician (59%). Staff were more likely than family to expect death (70% vs. 52%) and less likely to report low symptom burden (40% vs. 47%). Staff involvement in care related to concordance and perspectives of adult children were more similar to those of staff than were other types of family members. The authors conclude that family and staff perspectives about end-of-life experiences may differ substantially, and that efforts should be made to improve family-staff communication and interaction for joint decision making.
Background: Seventy percent of people with advanced dementia live and die in care homes. Multisensory approaches, such as Namaste Care, have been developed to improve the quality of life and dying for people with advanced dementia but little is known about effectiveness or optimum delivery. The aim of this review was to develop an explanatory account of how the Namaste Care intervention might
(Edited publisher abstract)
Background: Seventy percent of people with advanced dementia live and die in care homes. Multisensory approaches, such as Namaste Care, have been developed to improve the quality of life and dying for people with advanced dementia but little is known about effectiveness or optimum delivery. The aim of this review was to develop an explanatory account of how the Namaste Care intervention might work, on what outcomes, and in what circumstances. Methods: This is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories, and their validation with a purposive sample of stakeholders. Twenty stakeholders - user/patient representatives, dementia care providers, care home staff, researchers -took part in interviews and/or workshops. Results: The study included 85 papers. Eight focused on Namaste Care and the remainder on other types of sensory interventions such as music therapy or massage. The study identified three context-mechanism-outcome configurations which together provide an explanatory account of what needs to be in place for Namaste Care to work for people living with advanced dementia. This includes: providing structured access to social and physical stimulation, equipping care home staff to cope effectively with complex behaviours and variable responses, and providing a framework for person-centred care. A key overarching theme concerned the importance of activities that enabled the development of moments of connection for people with advanced dementia. Conclusions: This realist review provides a coherent account of how Namaste Care, and other multisensory interventions might work. It provides practitioners and researchers with a framework to judge the feasibility and likely success of Namaste Care in long term settings. Key for staff and residents is that the intervention triggers feelings of familiarity, reassurance, engagement and connection.
(Edited publisher abstract)
Subject terms:
dementia, palliative care, end of life care, terminal illness, dying, therapies, therapy and treatment, intervention, care homes, residential care, quality of life, literature reviews;
... The key areas covered include: the principles of care, the role of the care worker, the needs of older people, care planning and risk assessment, effective communication and recording, supervision, dealing with challenging behaviour, death and dying, and elder abuse.
This training manual is designed specifically for residential and day care staff who work with older people. Topics covered in the manual are closely linked to the new requirements for training in social care work as outlined in the TOPSS induction and foundation standards. Each of the chapters contains exercises, case studies, a reading list and a simple discussion of the relevant theory. The key areas covered include: the principles of care, the role of the care worker, the needs of older people, care planning and risk assessment, effective communication and recording, supervision, dealing with challenging behaviour, death and dying, and elder abuse.
Extended abstract:
Author
PRITCHARD Jacki
Title
Training manual for working with older people in residential and day care settings.
Publisher
Jessica Kingsley, 2003
Summary
This manual is designed specifically for residential and day care staff who work with older people. Topics covered are closely linked to the new requirements for training in social care work as outlined in the TOPSS induction and foundation standards.
Context
The book is intended to support the recently-introduced national standards on induction for care workers. Designed to promote good practice in working with older people in residential and day care, it is aimed at helping care workers meet the new requirements.
Contents
A glossary is followed by 12 chapters on training care workers and using the manual; principles of care; the role of the care worker; the needs of older people; care planning; risk assessment; effective communication; recording; supervision; dealing with challenging behaviour; death, dying and bereavement; and abuse. Each chapter clearly outlines the TOPSS Induction and Foundation Standards and NVQs it is relevant to and contains a simple discussion of the relevant theory together with exercises, case studies, photocopiable handouts and other materials, a reading list, related training videos and useful organisations. Appendices list BVS videos and contact details of useful organisations.
93 references
Subject terms:
older people, residential care, risk assessment, supervision, case records, challenging behaviour, care homes, care planning, communication, day services, death, dying, elder abuse;
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;