This booklet is designed to help people start positive conversations about death with the people they care about to enable them to be sure that people's worries about dying and death are acknowledged. It looks at why it is important to talk about dying, barrier to having conversations about death, questions to talk about, and the physical changes that happen to people as they come to the end
(Edited publisher abstract)
This booklet is designed to help people start positive conversations about death with the people they care about to enable them to be sure that people's worries about dying and death are acknowledged. It looks at why it is important to talk about dying, barrier to having conversations about death, questions to talk about, and the physical changes that happen to people as they come to the end of their life. The booklet has been developed to help people explore and approach the subject, and support the ‘honest conversations’ that underpin Ambition 1 of the Ambitions for palliative and end of life care. An accompanying film is also available.
(Edited publisher abstract)
How long do people want to live? Why do some people want to live a very long time, and others would rather die relatively young? The current study examines the extent to which the preference to die young (<80 years, less than average life expectancy) or to live somewhat longer or much longer than average life expectancy (90-99 years or 100+ years, respectively) is related to a person's positive and negative expectations of what their life will be like in old age. The authors use multinomial regression analysis based on survey data from a large sample of younger and middle-aged adults in the United States of America (USA) (N = 1,631, age 18-64 years). The authors statistically control for socio-demographic characteristics as well as self-reported happiness and health. Main finding: that having fewer positive expectations for their own old age distinguishes people who prefer to die relatively young, while having fewer negative expectations distinguishes people who want to live beyond current levels of life expectancy. The results provide evidence that pessimistic expectations of life in old age can undermine the desire to live up to and beyond current average life expectancy. The study also provides descriptive data about how young and middle-aged adults in the USA anticipate their own ageing.
(Edited publisher abstract)
How long do people want to live? Why do some people want to live a very long time, and others would rather die relatively young? The current study examines the extent to which the preference to die young (<80 years, less than average life expectancy) or to live somewhat longer or much longer than average life expectancy (90-99 years or 100+ years, respectively) is related to a person's positive and negative expectations of what their life will be like in old age. The authors use multinomial regression analysis based on survey data from a large sample of younger and middle-aged adults in the United States of America (USA) (N = 1,631, age 18-64 years). The authors statistically control for socio-demographic characteristics as well as self-reported happiness and health. Main finding: that having fewer positive expectations for their own old age distinguishes people who prefer to die relatively young, while having fewer negative expectations distinguishes people who want to live beyond current levels of life expectancy. The results provide evidence that pessimistic expectations of life in old age can undermine the desire to live up to and beyond current average life expectancy. The study also provides descriptive data about how young and middle-aged adults in the USA anticipate their own ageing.
(Edited publisher abstract)
Subject terms:
ageing, older people, attitudes, dying, life expectancy;
Journal of Applied Research in Intellectual Disabilities, 30(6), 2017, pp.1089-1098.
Publisher:
Wiley
Background: This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning.
Methods: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews.
Results: There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I'm still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning.
Conclusion: The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end.
(Publisher abstract)
Background: This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning.
Methods: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews.
Results: There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I'm still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning.
Conclusion: The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end.
(Publisher abstract)
Subject terms:
learning disabilities, advance care planning, user views, end of life care, death, dying;
McMAUGH Pippa J., WIESE Michele Y., STANCLIFFE Roger J.
Journal article citation:
Journal of Intellectual and Developmental Disability, 42(3), 2017, pp.285-294.
Publisher:
Taylor and Francis
Background: People with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual disability about dying and death.
Method: Four participants were interviewed about how they discussed dying and death with their son or daughter with intellectual disability. Thematic analysis was used to interpret the findings.
Results: Parents did more than talk to their son or daughter about death; they involved them in dying and death experiences. Parents’ motivations influenced the way they included their son or daughter in these experiences.Conclusions: The parents played an important role in providing learning experiences for their son or daughter with intellectual disability about dying and death.
(Publisher abstract)
Background: People with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual disability about dying and death.
Method: Four participants were interviewed about how they discussed dying and death with their son or daughter with intellectual disability. Thematic analysis was used to interpret the findings.
Results: Parents did more than talk to their son or daughter about death; they involved them in dying and death experiences. Parents’ motivations influenced the way they included their son or daughter in these experiences.
Conclusions: The parents played an important role in providing learning experiences for their son or daughter with intellectual disability about dying and death.
(Publisher abstract)
... The authors propose parallel planning and mapping as a way of working with uncertainty. The authors acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless
(Edited publisher abstract)
Objectives: To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care
Setting Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs. Participants: People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10). Methods: In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions. Results: 28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact. Conclusions: This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. The authors propose parallel planning and mapping as a way of working with uncertainty. The authors acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored.
(Edited publisher abstract)
Subject terms:
homeless people, qualitative research, palliative care, homelessness, end of life care, user views, death, dying, communication;
Purpose: The purpose of this study is to ascertain how bereaved caregivers of a family member who died from a dementia-related diagnosis (a) define preparedness and (b) perceive its value.
Design and Methods: Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyse the data.
Results: Only one third (n = 10) of caregivers interviewed were prepared for the death, and the majority who were prepared were enrolled in hospice. Five primary themes revealed ways that caregivers define various domains of preparedness: (i) accepting reality; (ii) knowing death is near; (iii) getting your “house in order”; (iv) saying “what you need to say”; and (v) giving “permission” to die. The majority (87%) believed that it is important for caregivers to be prepared, and the value of preparedness was exemplified in five domains reflecting the benefits of being prepared.
Implications: The results support further attention to the development and testing of interventions to address the unmet needs of caregivers of family members with dementia to help prepare them for the death in a variety of contexts
(Publisher abstract)
Purpose: The purpose of this study is to ascertain how bereaved caregivers of a family member who died from a dementia-related diagnosis (a) define preparedness and (b) perceive its value.
Design and Methods: Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyse the data.
Results: Only one third (n = 10) of caregivers interviewed were prepared for the death, and the majority who were prepared were enrolled in hospice. Five primary themes revealed ways that caregivers define various domains of preparedness: (i) accepting reality; (ii) knowing death is near; (iii) getting your “house in order”; (iv) saying “what you need to say”; and (v) giving “permission” to die. The majority (87%) believed that it is important for caregivers to be prepared, and the value of preparedness was exemplified in five domains reflecting the benefits of being prepared.
Implications: The results support further attention to the development and testing of interventions to address the unmet needs of caregivers of family members with dementia to help prepare them for the death in a variety of contexts
(Publisher abstract)
Journal of Health Services Research and Policy, 22(3), 2017, pp.149-154.
Publisher:
Sage
Place of publication:
London
... of inequality. This represents the estimated gap between the most and least deprived neighbourhood in England, allowing for the gradient in between. Neighbourhoods were geographic Lower Layer Super Output Areas containing about 1500 people each.
Results: The overall proportion of patients dying in hospital decreased from 49.5% to 43.6% during the study period, after initially increasing to 52.0% in 2004/2005. There was substantial ‘pro-rich’ inequality, with an estimated difference of 5.95 percentage points in the proportion of people dying in hospital (confidence interval 5.26 to 6.63), comparing the most and least deprived neighbourhoods in 2011/2012. There was no significant reduction in this gap over time, either in absolute terms or relative to the mean, despite the overall reduction in the proportion of patients dying in hospital.
Conclusions: Efforts to reduce the proportion of patients dying in hospital in England have been successful overall but did not reduce inequality. Greater understanding of the reasons for such inequality is required before policy changes can be determined.
(Publisher abstract)
Objective: To describe trends in socioeconomic inequality in the proportion of deaths occurring in hospital, during a period of sustained effort by the NHS in England to improve end of life care.
Methods: Whole-population, small area longitudinal study involving 5,260,871 patients of all ages who died in England from 2001/2002 to 2011/2012. Our primary measure of inequality was the slope index of inequality. This represents the estimated gap between the most and least deprived neighbourhood in England, allowing for the gradient in between. Neighbourhoods were geographic Lower Layer Super Output Areas containing about 1500 people each.
Results: The overall proportion of patients dying in hospital decreased from 49.5% to 43.6% during the study period, after initially increasing to 52.0% in 2004/2005. There was substantial ‘pro-rich’ inequality, with an estimated difference of 5.95 percentage points in the proportion of people dying in hospital (confidence interval 5.26 to 6.63), comparing the most and least deprived neighbourhoods in 2011/2012. There was no significant reduction in this gap over time, either in absolute terms or relative to the mean, despite the overall reduction in the proportion of patients dying in hospital.
Conclusions: Efforts to reduce the proportion of patients dying in hospital in England have been successful overall but did not reduce inequality. Greater understanding of the reasons for such inequality is required before policy changes can be determined.
(Publisher abstract)
Subject terms:
hospitals, inequalities, dying, end of life care, socioeconomic groups, NHS, health care, comparative studies, health inequalities;
Journal of Applied Research in Intellectual Disabilities, 30(6), 2017, pp.1007-1021.
Publisher:
Wiley
Background: Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff supporting adults with intellectual disabilities with issues of death, dying and bereavement.
Method: Thirteen papers were identified following a systematic review of six databases.
Results: Three themes were developed following a lines-of-argument synthesis: (i) talking about death is hard: negotiating the uncertainty in death, dying and bereavement; (ii) the commitment to promoting a “good death”; and (iii) the grief behind the professional mask. “A cautious silence: The taboo of death” was an overarching theme.
Conclusions: A more open culture around issues of death, dying and bereavement in intellectual disability settings is essential and could be promoted through staff training and support.
(Publisher abstract)
Background: Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff supporting adults with intellectual disabilities with issues of death, dying and bereavement.
Method: Thirteen papers were identified following a systematic review of six databases.
Results: Three themes were developed following a lines-of-argument synthesis: (i) talking about death is hard: negotiating the uncertainty in death, dying and bereavement; (ii) the commitment to promoting a “good death”; and (iii) the grief behind the professional mask. “A cautious silence: The taboo of death” was an overarching theme.
Conclusions: A more open culture around issues of death, dying and bereavement in intellectual disability settings is essential and could be promoted through staff training and support.
(Publisher abstract)
Journal of Applied Research in Intellectual Disabilities, 30(6), 2017, pp.1099-1110.
Publisher:
Wiley
Background: Many people with intellectual disabilities are affected by death, yet conversations about death are often avoided by staff working with them. This study aimed to assess staff training needs and to develop, trial and evaluate a training course on communicating about death and dying.
Method: (i) Semi-structured interviews with 20 staff in residential/supported living services of the course was overwhelmingly positive.
Conclusions: Intellectual disabilities services must have clear staff training strategies around death, dying and communication. More work is needed to assess the resource implications and impact on practice of different training methods and other support strategies.
(Publisher abstract)
Background: Many people with intellectual disabilities are affected by death, yet conversations about death are often avoided by staff working with them. This study aimed to assess staff training needs and to develop, trial and evaluate a training course on communicating about death and dying.
Method: (i) Semi-structured interviews with 20 staff in residential/supported living services to establish training needs; (ii) three-one-day courses were attended by 114 staff and evaluated through questionnaires. The course consisted of World Café sessions, presentations and feedback by people with intellectual disabilities, and an expert teaching session.
Results: Staff fear, cultural influences and inexperience with death-related conversations were major communication barriers. Evaluation of the course was overwhelmingly positive.
Conclusions: Intellectual disabilities services must have clear staff training strategies around death, dying and communication. More work is needed to assess the resource implications and impact on practice of different training methods and other support strategies.
(Publisher abstract)
Journal of Gay and Lesbian Social Services, 29(3), 2017, pp.273-279.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
Lesbian, gay, bisexual, transgender, and queer (LGBTQ) persons often receive end-of-life care incongruent with wishes. Evidence with heterosexual samples supports associations among end-of-life documentation (do not resuscitate [DNR] orders, durable power of attorney for health care orders [DPOAH], living wills [LW]), and care consistent with wishes. However, little is known about the knowledge, attitudes, and willingness regarding utilisation of these documents among LGBTQ persons. Of 107 participants, most had heard of each document (95% DNR, 91% DPOAH, 97% LW), but had not procured them (26% DNR, 50% DPOAH, 51% LW). Answers above 4 on a 5-point Likert scale indicated willingness to pursue these documents and belief documents would be enforced. However, approximately one-third of respondents believed documents would be enforced more for heterosexual persons than themselves. This result indicates sexuality or gender minority-related stigma may be a barrier to document utilisation. Future research, policies, and guidelines should address these concerns.
(Edited publisher abstract)
Lesbian, gay, bisexual, transgender, and queer (LGBTQ) persons often receive end-of-life care incongruent with wishes. Evidence with heterosexual samples supports associations among end-of-life documentation (do not resuscitate [DNR] orders, durable power of attorney for health care orders [DPOAH], living wills [LW]), and care consistent with wishes. However, little is known about the knowledge, attitudes, and willingness regarding utilisation of these documents among LGBTQ persons. Of 107 participants, most had heard of each document (95% DNR, 91% DPOAH, 97% LW), but had not procured them (26% DNR, 50% DPOAH, 51% LW). Answers above 4 on a 5-point Likert scale indicated willingness to pursue these documents and belief documents would be enforced. However, approximately one-third of respondents believed documents would be enforced more for heterosexual persons than themselves. This result indicates sexuality or gender minority-related stigma may be a barrier to document utilisation. Future research, policies, and guidelines should address these concerns.
(Edited publisher abstract)
Subject terms:
end of life care, older people, LGBT people, participation, user participation, service users, death, dying, stereotyped attitudes;