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)
Nursing and Residential Care, 13(3), March 2011, pp.137-138, 140.
Publisher:
MA Healthcare Ltd.
Place of publication:
London
'Route to success: achieving quality end of life care in care homes', published by the National End of Life Care Programme, provides a practical approach to providing end of life care. This article looks at the coverage of the guide and how it can be implemented within a care home.
'Route to success: achieving quality end of life care in care homes', published by the National End of Life Care Programme, provides a practical approach to providing end of life care. This article looks at the coverage of the guide and how it can be implemented within a care home.
Subject terms:
care homes, care planning, communication, dying, end of life care;
A film using animation and vox pops to make the case for practitioners to communicate with a person who is dying clearly and compassionately. It stresses the importance of practitioners to show how much they care about the person who is dying; as well as being clear about what they're doing to help and support the person and their friends and relatives. Practitioners need to ask themselves
(Edited publisher abstract)
A film using animation and vox pops to make the case for practitioners to communicate with a person who is dying clearly and compassionately. It stresses the importance of practitioners to show how much they care about the person who is dying; as well as being clear about what they're doing to help and support the person and their friends and relatives. Practitioners need to ask themselves whether the words they are using convey this compassion, and also check with those they are caring for, that the information they are providing is clear as well as compassionate. The film will be useful for care staff, social workers, care managers, carers, community nurses and nursing staff.
(Edited publisher abstract)
Subject terms:
palliative care, end of life care, communication, dying, families, relatives;
Journal of Policy and Practice in Intellectual Disabilities, 18(3), 2021, pp.207-216.
Publisher:
Wiley
Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis. Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential
(Edited publisher abstract)
Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members. Methods: The study reported here aimed to find out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis. Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities. Conclusion: The findings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.
(Edited publisher abstract)
Subject terms:
dying, end of life care, learning disabilities, user views, needs, communication, person-centred care;
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)
... and distribution of services; out of hours and emergency support; managing symptoms and medication; understanding dying; and perceptions of palliative care. The findings reveal respondents’ frustrations with lack of care and treatment, as well as with a lack of communication and understanding around death and dying. The report calls for further investment on service provision at the end of life, including
(Edited publisher abstract)
This report presents a supplementary analysis of a public survey carried out by the Palliative and end of life care Priority Setting Partnership (PeolcPSP) with the James Lind Alliance (JLA) in 2013-14. The report presents and discusses themes that cover: communication; support, including bereavement, financial support, supporting families and supporting staff; access to services; co-ordination and distribution of services; out of hours and emergency support; managing symptoms and medication; understanding dying; and perceptions of palliative care. The findings reveal respondents’ frustrations with lack of care and treatment, as well as with a lack of communication and understanding around death and dying. The report calls for further investment on service provision at the end of life, including alternative service models to address the priorities for care that patients and families find most important.
(Edited publisher abstract)
Subject terms:
palliative care, end of life care, surveys, access to services, bereavement counselling, communication, dying;
Child: Care, Health and Development, 42(1), 2016, pp.60-67.
Publisher:
Wiley
Background: What to tell children when their mother's life is seriously endangered is a largely unstudied issue.
Methods: The authors had 255 lay persons in France judge the appropriateness of the parents' behaviour in 48 scenarios of parents dealing with this problem. The scenarios comprised according to a four within-subject orthogonal design: child's age (4, 6, 8 or 10 years), severity of disease (lethal or worrisome but curable), child's concern or not about his or her mother's illness and parents' decision about how much to tell (tell nothing, minimize or tell the full truth).
Results: Cluster analysis revealed four clusters, labelled ‘always tell the truth’ (33%), ‘tell the truth or minimize’ (16%), ‘tell nothing or minimize’ (22%) and ‘depends on child's age and level of concern’ (29%). Women and participants who had already faced breaking bad news like this to children were more frequently members of the two ‘tell the truth’ clusters than other participants.
Conclusions: People who have already experienced a situation of having to tell a child about their mother's bad health tend to think, more than others, that telling the truth is the best policy.
(Edited publisher abstract)
Background: What to tell children when their mother's life is seriously endangered is a largely unstudied issue.
Methods: The authors had 255 lay persons in France judge the appropriateness of the parents' behaviour in 48 scenarios of parents dealing with this problem. The scenarios comprised according to a four within-subject orthogonal design: child's age (4, 6, 8 or 10 years), severity of disease (lethal or worrisome but curable), child's concern or not about his or her mother's illness and parents' decision about how much to tell (tell nothing, minimize or tell the full truth).
Results: Cluster analysis revealed four clusters, labelled ‘always tell the truth’ (33%), ‘tell the truth or minimize’ (16%), ‘tell nothing or minimize’ (22%) and ‘depends on child's age and level of concern’ (29%). Women and participants who had already faced breaking bad news like this to children were more frequently members of the two ‘tell the truth’ clusters than other participants.
Conclusions: People who have already experienced a situation of having to tell a child about their mother's bad health tend to think, more than others, that telling the truth is the best policy.
(Edited publisher abstract)
NATIONAL COUNCIL FOR PALLIATIVE CARE, TOGETHER FOR SHORT LIVES
Publisher:
National Council for Palliative Care
Publication year:
2015
Pagination:
16
Place of publication:
London
A guide to help health professionals' talk to young adults with life-limiting conditions about end of life issues. It aims to support professionals to improve quality of life and provide peace of mind for young people and their families, by sharing insights from young people themselves and their families about discussing the end of life. The guide describes feelings they experience when having conversations on this sensitive subject and gives ideas about how to approach it. It also aims to be a useful prompt that young people can use to broach the subject of end of life planning with family, friends and professionals.
(Edited publisher abstract)
A guide to help health professionals' talk to young adults with life-limiting conditions about end of life issues. It aims to support professionals to improve quality of life and provide peace of mind for young people and their families, by sharing insights from young people themselves and their families about discussing the end of life. The guide describes feelings they experience when having conversations on this sensitive subject and gives ideas about how to approach it. It also aims to be a useful prompt that young people can use to broach the subject of end of life planning with family, friends and professionals.
(Edited publisher abstract)
Subject terms:
long term conditions, young people, end of life care, dying, communication, young adults, death;
Journal of Applied Research in Intellectual Disabilities, 33(5), 2020, pp.927-938.
Publisher:
Wiley
Background: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. Method: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi‐squared statistics. Results: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. Conclusion: Death affects many people with intellectual disability. Staff require training and support in communicating death.
(Edited publisher abstract)
Background: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. Method: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi‐squared statistics. Results: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. Conclusion: Death affects many people with intellectual disability. Staff require training and support in communicating death.
(Edited publisher abstract)
Subject terms:
death, dying, bereavement, bereavement counselling, communication, staff-user relationships, terminal illness, end of life care, care workers, training;
The SPIKES protocol will be discussed in the context of working with a patient who was referred to palliative care in the hospital setting. Palliative care is complex because it is not only medical care but also emotional and spiritual care. Those working in palliative care often explain a diagnosis to the patient, both what the diagnosis is and what it likely means for the future. The SPIKES protocol, a conversational tool for delivering bad news, has applications for social workers. This case study will tell the story of a patient whose fear of death almost cost him the ability to live fully at the end of his life and how the SPIKES tool was implemented in helping this patient understand and come to terms with his diagnosis.
(Edited publisher abstract)
The SPIKES protocol will be discussed in the context of working with a patient who was referred to palliative care in the hospital setting. Palliative care is complex because it is not only medical care but also emotional and spiritual care. Those working in palliative care often explain a diagnosis to the patient, both what the diagnosis is and what it likely means for the future. The SPIKES protocol, a conversational tool for delivering bad news, has applications for social workers. This case study will tell the story of a patient whose fear of death almost cost him the ability to live fully at the end of his life and how the SPIKES tool was implemented in helping this patient understand and come to terms with his diagnosis.
(Edited publisher abstract)
Subject terms:
dying, case studies, palliative care, end of life care, hospices, death, diagnosis, communication;