Information on: the End of Life Care Strategy - promoting high quality care for all adults at the end of life; how the Government's commitment on end of life care will be delivered; and other end of life care-related issues and programmes.
Information on: the End of Life Care Strategy - promoting high quality care for all adults at the end of life; how the Government's commitment on end of life care will be delivered; and other end of life care-related issues and programmes.
Subject terms:
palliative care, terminal illness, dying, end of life care;
Can terminal illness ever be fun? At the peak of his career as an eco-architect, Christopher Day developed Motor Neurone (Lou Gehrig's) Disease. Initially, the future seemed bleak, but as the illness progressed, his attitude changed. The more things went wrong, the more hilarious life became. He began to appreciate the gifts illness has brought. (my) Dying is Fun is for anyone, or anyone who knows anyone, who might one day die. Especially, it's for anyone who needs to laugh. This book transforms disability and dying into a testament for life.
Can terminal illness ever be fun? At the peak of his career as an eco-architect, Christopher Day developed Motor Neurone (Lou Gehrig's) Disease. Initially, the future seemed bleak, but as the illness progressed, his attitude changed. The more things went wrong, the more hilarious life became. He began to appreciate the gifts illness has brought. (my) Dying is Fun is for anyone, or anyone who knows anyone, who might one day die. Especially, it's for anyone who needs to laugh. This book transforms disability and dying into a testament for life.
Journal of Social Work in End-of-Life and Palliative Care, 17(4), 2021, pp.317-348.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
Extant research on the topic of death and dying in modern society frequently includes the observation that death is now rendered invisible, and dying individuals are stigmatized and socially avoided. The current research speculated that lack of contact with a dying individual may promote negative perceptions of the dying, and this may in turn lead to further avoidance of them. Three studies were conducted: The first study examined how frequently the current U.S. participants had social contact with a dying individual; the second study investigated what perceptions they have of the dying, and the third study tested for potential causal links between negative perceptions of the dying and social avoidance of them. The results indicated: Only a small number of the U.S. participants ever had frequent social contact with a dying individual outside their family; they, nevertheless, shared several common negative perceptions of the dying; and those negative perceptions exerted different effects on one’s avoidant attitude toward a dying individual―only making males more avoidant, especially in a physically close social relationship. Two concepts, medicalization and masculinism, were suggested as possible explanations for why dying individuals are stigmatized and avoided in modern society.
(Edited publisher abstract)
Extant research on the topic of death and dying in modern society frequently includes the observation that death is now rendered invisible, and dying individuals are stigmatized and socially avoided. The current research speculated that lack of contact with a dying individual may promote negative perceptions of the dying, and this may in turn lead to further avoidance of them. Three studies were conducted: The first study examined how frequently the current U.S. participants had social contact with a dying individual; the second study investigated what perceptions they have of the dying, and the third study tested for potential causal links between negative perceptions of the dying and social avoidance of them. The results indicated: Only a small number of the U.S. participants ever had frequent social contact with a dying individual outside their family; they, nevertheless, shared several common negative perceptions of the dying; and those negative perceptions exerted different effects on one’s avoidant attitude toward a dying individual―only making males more avoidant, especially in a physically close social relationship. Two concepts, medicalization and masculinism, were suggested as possible explanations for why dying individuals are stigmatized and avoided in modern society.
(Edited publisher abstract)
Journal of Social Work in End-of-Life and Palliative Care, 7(4), October 2011, pp.363-382.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
... It explores the concept of liminality, used to describe someone who is in-between or standing at a threshold. It also considers the concepts of ambiguous dying, and how this affects the person’s social role, and ambiguous loss to understand the interactions between patients and their social support systems. Using a case study, the article analyses the psychological ambiguities present during recovery from
Due to advances in medical technology, an increasing number of patients survive severe critical illnesses that would once have been fatal. During hospitalisation in Intensive Care Units, these patients may have experienced vivid hallucinations as a side effect of their sedating medications. This article considers the complex emotional and psychological aspects of recovery from critical illness. It explores the concept of liminality, used to describe someone who is in-between or standing at a threshold. It also considers the concepts of ambiguous dying, and how this affects the person’s social role, and ambiguous loss to understand the interactions between patients and their social support systems. Using a case study, the article analyses the psychological ambiguities present during recovery from critical illness. It concludes by considering the implications for social work practice, arguing that, in order to support patients and their families, social workers need to understand both the psychological impact of the patient’s illness experiences and the complex ambiguities involved in recovery from critical illness.
Subject terms:
psychology, social work, terminal illness, case studies, dying;
Journal of Social Work in End-of-Life and Palliative Care, 7(1), January 2011, pp.99-109.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
Life-threatening illnesses are not only a medical concern, but a psychological, social and family problem. This article examines the ways in which an individual's spirituality influences responses to life-threatening illness and dying. It begins by differentiating between religion and spirituality, and then delineates the spiritual issues that arise in a life-threatening illness including
Life-threatening illnesses are not only a medical concern, but a psychological, social and family problem. This article examines the ways in which an individual's spirituality influences responses to life-threatening illness and dying. It begins by differentiating between religion and spirituality, and then delineates the spiritual issues that arise in a life-threatening illness including the spiritual needs that arise in the final phases of illness. Spiritual support can be challenging for professionals, who rarely have any specialised training. Because of this, they may be reluctant to enter into conversations discussing religions or spirituality. However, these issues can arise throughout the entire experience of life-threatening illness. As such, professionals should be prepared to engage in these discussions. Recommendations for spiritual assessments and interventions are offered
Subject terms:
religious beliefs, spirituality, terminal illness, dying, end of life care;
Royal Association for Disability and Rehabilitation
In September 2009, the Director of Public Prosecution (DPP), issued Interim Guidelines to clarify the circumstances in which someone who assists a suicide would be prosecuted, in response to a legal challenge by campaigner for assisted suicide Debbie Purdy. The Interim Guidelines listed a series of factors which would to determine whether or not a prosecution would be in the public interest. One factor that would mitigate against a prosecution was if “the victim had a terminal illness or a severe and incurable physical disability or a severe degenerative physical condition from which there was no possibility of recovery.” This short article highlights the major features within the guidelines, which ultimately leave open the possibility of prosecutors showing compassion and not prosecuting.
In September 2009, the Director of Public Prosecution (DPP), issued Interim Guidelines to clarify the circumstances in which someone who assists a suicide would be prosecuted, in response to a legal challenge by campaigner for assisted suicide Debbie Purdy. The Interim Guidelines listed a series of factors which would to determine whether or not a prosecution would be in the public interest. One factor that would mitigate against a prosecution was if “the victim had a terminal illness or a severe and incurable physical disability or a severe degenerative physical condition from which there was no possibility of recovery.” This short article highlights the major features within the guidelines, which ultimately leave open the possibility of prosecutors showing compassion and not prosecuting.
Journal of Social Work in End-of-Life and Palliative Care, 5(3-4), July 2009, pp.169-185.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
Spirituality is an important issue for many patients in hospice care. Even if a patient is not religious or aware of being a spiritual person, spiritual needs can still be just as important as other needs at the end-of-life. The need for spiritual care often increases as patients struggle to accept the dying process. When patients fail to meet their spiritual needs, a deep sense of spiritual pain
Spirituality is an important issue for many patients in hospice care. Even if a patient is not religious or aware of being a spiritual person, spiritual needs can still be just as important as other needs at the end-of-life. The need for spiritual care often increases as patients struggle to accept the dying process. When patients fail to meet their spiritual needs, a deep sense of spiritual pain can result which may require the provision of spiritual care. Spiritual care usually involves a patient's religious leader or hospice chaplain; however, social workers have the ability to provide spiritually-sensitive generalist practice. Spiritually-sensitive generalist practice centres on the ability of social workers to validate the essence of their patients. The characteristics of spiritually-sensitive generalist practice include appreciating differences, seeing the extraordinary in the ordinary, conveying reverence, being authentic, being responsive, and expressing love. Supportive presence, effective communication, and emotional connection are described as examples of spiritually-supportive generalist practice.
Subject terms:
hospices, social workers, spirituality, terminal illness, dying;
The story behind In Death’s Waiting Room is a penetrating human drama that concerns us all - as our “greatest generation” continues to age, more and more families are contending with the onset of dementia in their elderly parents and grandparents, a trend that will only continue as the global population of senior citizens continues to grow with certain speed. For this remarkable volume, Anne-Marie The carried out two years of hands-on ethnographic research in an Amsterdam nursing home for patients with various forms of dementia. In Death’s Waiting Room reveals what usually remains hidden in these modern-day centres of care: the decision to stop treatment, the poverty and voodoo rituals of the black Caribbean nursing staff looking after predominantly white patients, the difficulties faced—and caused—by relatives, and the tensions and aggressions between residents. This immensely readable and moving volume also shares the touching moments of humour and compassion, while at the same time forcing us to consider our own potential confrontation with dementia, in our own or our parents’ lives. From conversations with underpaid nurses to confrontations with family visitors who insist on prolonging treatment against all odds, this searing book is a truly necessary guide to some of the most wrenching aspects of old age.
The story behind In Death’s Waiting Room is a penetrating human drama that concerns us all - as our “greatest generation” continues to age, more and more families are contending with the onset of dementia in their elderly parents and grandparents, a trend that will only continue as the global population of senior citizens continues to grow with certain speed. For this remarkable volume, Anne-Marie The carried out two years of hands-on ethnographic research in an Amsterdam nursing home for patients with various forms of dementia. In Death’s Waiting Room reveals what usually remains hidden in these modern-day centres of care: the decision to stop treatment, the poverty and voodoo rituals of the black Caribbean nursing staff looking after predominantly white patients, the difficulties faced—and caused—by relatives, and the tensions and aggressions between residents. This immensely readable and moving volume also shares the touching moments of humour and compassion, while at the same time forcing us to consider our own potential confrontation with dementia, in our own or our parents’ lives. From conversations with underpaid nurses to confrontations with family visitors who insist on prolonging treatment against all odds, this searing book is a truly necessary guide to some of the most wrenching aspects of old age.
YOUNG Amanda J., ROGERS Angie, ADDINGTON-HALL Julia M.
Journal article citation:
Health and Social Care in the Community, 16(4), July 2008, pp.419-428.
Publisher:
Wiley
... services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. The data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives
Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003 a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four primary care trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last three months and had been ill for more than one month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last three months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them "rewarding". Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. The data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.
Subject terms:
palliative care, stroke, terminal illness, carers, dying;