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;
International Social Work, 52(6), November 2009, pp.713-725.
Publisher:
Sage
Evidence from the international literature concerning contemporary dying in old age and its imperatives for social work are considered. Dying in old age has become the majority dying of the developed world, yet older people are routinely denied palliative care, their dying characterized by failure to facilitate choice and recognize their needs. Social workers in all settings should embrace
Evidence from the international literature concerning contemporary dying in old age and its imperatives for social work are considered. Dying in old age has become the majority dying of the developed world, yet older people are routinely denied palliative care, their dying characterized by failure to facilitate choice and recognize their needs. Social workers in all settings should embrace their contribution to quality end-of-life care for older people.
Subject terms:
older people, palliative care, social work, advance decision, dying;
Dementia: the International Journal of Social Research and Practice, 8(3), August 2009, pp.407-415.
Publisher:
Sage
This paper proposes a new, alternative approach and setting for end-stage dementia patients with Aminoff Suffering Syndrome (ASS) that could pertain to the Israeli setting and could possibly also be acceptable in other countries. Short hospitalisation periods of approximately 1 month and treatment in Relief of Suffering End-of-Life with Dementia Units may be a new palliative approach and present a possible solution for coping with the horrendous burden of the suffering of dementia patients, their families, and the medical and nursing staff. Aminoff Suffering Syndrome (ASS) in advanced dementia is the proposed symptomatology and pathological entity that is characterized by a high Mini Suffering State Examination (MSSE) scale score, <6 months survival, irreversible and intractable aggravation of suffering and medical condition until demise.
This paper proposes a new, alternative approach and setting for end-stage dementia patients with Aminoff Suffering Syndrome (ASS) that could pertain to the Israeli setting and could possibly also be acceptable in other countries. Short hospitalisation periods of approximately 1 month and treatment in Relief of Suffering End-of-Life with Dementia Units may be a new palliative approach and present a possible solution for coping with the horrendous burden of the suffering of dementia patients, their families, and the medical and nursing staff. Aminoff Suffering Syndrome (ASS) in advanced dementia is the proposed symptomatology and pathological entity that is characterized by a high Mini Suffering State Examination (MSSE) scale score, <6 months survival, irreversible and intractable aggravation of suffering and medical condition until demise.
Subject terms:
palliative care, hospital admission, death, dementia, dying;
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;
Critical Social Policy, 29(1), February 2009, pp.146-157.
Publisher:
Sage
In November 2006 a joint National Institute for Health and Clinical Excellence (NICE) and Social Care Institute for Excellence (SCIE) guideline to improve the care of people with dementia was released. The author argues that this policy document reflects both a medicalized approach to care (emphasizing pharmacological management and health services) as well as one characterized by professional dominance (an emphasis on professional authority and control). It is argued that despite the involvement of social sciences in its development the policy reflects common biases in other areas of policy and practice in the care of older people. Furthermore, the idea that people with dementia have complex end of life care needs is addressed only with the most cursory and clinically oriented approaches to palliative care. A critical commentary about this policy approach is supplemented with a brief description of an alternative policy vision that connects older people's care with a wider public health approach to end of life care for older people.
In November 2006 a joint National Institute for Health and Clinical Excellence (NICE) and Social Care Institute for Excellence (SCIE) guideline to improve the care of people with dementia was released. The author argues that this policy document reflects both a medicalized approach to care (emphasizing pharmacological management and health services) as well as one characterized by professional dominance (an emphasis on professional authority and control). It is argued that despite the involvement of social sciences in its development the policy reflects common biases in other areas of policy and practice in the care of older people. Furthermore, the idea that people with dementia have complex end of life care needs is addressed only with the most cursory and clinically oriented approaches to palliative care. A critical commentary about this policy approach is supplemented with a brief description of an alternative policy vision that connects older people's care with a wider public health approach to end of life care for older people.
Subject terms:
palliative care, public health, ageing, dementia, dying;
Good counselling skills are often not taught to the professionals who need them most. Compassionate and tactful communication skills can make the difference between an awkward encounter with a dying patient, and an engaging, empathic bond between two people. The author draws on his experience as a trained counsellor and palliative medicine specialist. Covering difficult subjects such as breaking the news of terminal illness to a patient, euthanasia and the effect of working with patients on carers, "Speaking of Dying" is a practical guide to using counselling skills for all clinical disciplines working in palliative care, whether in a hospice, hospital or at home. Complete with a clear explanation of both counselling and medical terminology, this hands-on guide will be an invaluable companion
Good counselling skills are often not taught to the professionals who need them most. Compassionate and tactful communication skills can make the difference between an awkward encounter with a dying patient, and an engaging, empathic bond between two people. The author draws on his experience as a trained counsellor and palliative medicine specialist. Covering difficult subjects such as breaking the news of terminal illness to a patient, euthanasia and the effect of working with patients on carers, "Speaking of Dying" is a practical guide to using counselling skills for all clinical disciplines working in palliative care, whether in a hospice, hospital or at home. Complete with a clear explanation of both counselling and medical terminology, this hands-on guide will be an invaluable companion to anyone working in palliative care.
Subject terms:
palliative care, counselling, dying, euthanasia, good practice;
Journal of Social Work in End-of-Life and Palliative Care, 5(3-4), July 2009, pp.144-168.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility, or a community support programme, were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis, and themes were determined by consensus. There were a total of 12 challenges identified across the care sites, 2 of these were reported across the 3 care settings and the others were distinctive to 1 or 2 sites. The 2 themes that emerged in all 3 settings were bearing witness and the experience of loss. All 12 themes are described and illustrative examples are provided. Of the 3 settings, a wider range of challenges was reported for the skilled nursing facility. The study findings contribute to knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues.
This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility, or a community support programme, were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis, and themes were determined by consensus. There were a total of 12 challenges identified across the care sites, 2 of these were reported across the 3 care settings and the others were distinctive to 1 or 2 sites. The 2 themes that emerged in all 3 settings were bearing witness and the experience of loss. All 12 themes are described and illustrative examples are provided. Of the 3 settings, a wider range of challenges was reported for the skilled nursing facility. The study findings contribute to knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues.
Subject terms:
hospices, terminal illness, community care, dying, family members, evaluation;
This briefing reports on the initial findings from a survey which asked doctors about decisions they had made about the provision, withdrawing or withholding of treatment at the end of life. It also contained questions about doctors’ attitudes to the legalisation of physician-assisted suicide and euthanasia. The purpose of this briefing is to give an overview of the main findings together with some commentary on some of the significant aspects, including 'double effect', the difference between public and medical opinion, and the use of continuous deep sedation.
This briefing reports on the initial findings from a survey which asked doctors about decisions they had made about the provision, withdrawing or withholding of treatment at the end of life. It also contained questions about doctors’ attitudes to the legalisation of physician-assisted suicide and euthanasia. The purpose of this briefing is to give an overview of the main findings together with some commentary on some of the significant aspects, including 'double effect', the difference between public and medical opinion, and the use of continuous deep sedation.
Subject terms:
palliative care, attitudes, decision making, doctors, dying, euthanasia;
Journal of Policy and Practice in Intellectual Disabilities, 6(4), December 2009, pp.267-275.
Publisher:
Wiley
This study aimed to explore care concerns in supporting people with a learning disability and advanced dementia, and to develop, deliver and evaluate an educational intervention with staff in learning disability settings and specialist palliative care services. Fourteen focus group interviews were conducted with staff across six learning disability services and one specialist palliative care provider in the greater Dublin area. Qualitative descriptive analysis resulted in the emergence of key themes and formed the development of an educational intervention. Pre- and posttest questionnaires assessed responses to a pilot delivery of the educational intervention. Formal feedback from staff indicated that the educational intervention was highly valued and addressed key training concerns. They agreed that the training supported "ageing in place," and the preparation for a "good death" including support for staff, peers and family in their grief and bereavement. An educational intervention in the form of a trainer manual was produced to support cross-service system in-service training on issues of addressing advanced dementia in people with learning disabilities.
This study aimed to explore care concerns in supporting people with a learning disability and advanced dementia, and to develop, deliver and evaluate an educational intervention with staff in learning disability settings and specialist palliative care services. Fourteen focus group interviews were conducted with staff across six learning disability services and one specialist palliative care provider in the greater Dublin area. Qualitative descriptive analysis resulted in the emergence of key themes and formed the development of an educational intervention. Pre- and posttest questionnaires assessed responses to a pilot delivery of the educational intervention. Formal feedback from staff indicated that the educational intervention was highly valued and addressed key training concerns. They agreed that the training supported "ageing in place," and the preparation for a "good death" including support for staff, peers and family in their grief and bereavement. An educational intervention in the form of a trainer manual was produced to support cross-service system in-service training on issues of addressing advanced dementia in people with learning disabilities.
Subject terms:
learning disabilities, palliative care, training, carers, dementia, dying;
Social Work in Health Care, 48(5), July 2009, pp.519-532.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
... to palliative care. The findings suggested two possible pathways toward enhancing the psychosocial experience of dying patients, that is, the “family support pathway” and the “familial-altruistic pathway.” Further reflections on the findings may suggest that these patients may be situated in a “support paradox,” in which they desire family support but also worry about the burden that support places on family
A good death is universally desired. For Chinese patients, the family is believed to play a key role in making this possible. This study explored the relationship of family-related factors and psychosocial outcomes among Hong Kong Chinese cancer patients in palliative care. Clinical data mining was adopted as the research method. Nurses collected data from clinical interviews with incoming palliative care patients. A total of 935 patients from three years of deceased patient records was included. Stepwise regression analysis demonstrated that “caregivers' support and acceptance” predicted fewer psychosocial symptoms of patients, whereas “depressed family response to patient's illness” and “family anxiety” predicted a greater number of psychosocial symptoms of patients upon their admission to palliative care. The findings suggested two possible pathways toward enhancing the psychosocial experience of dying patients, that is, the “family support pathway” and the “familial-altruistic pathway.” Further reflections on the findings may suggest that these patients may be situated in a “support paradox,” in which they desire family support but also worry about the burden that support places on family members. Implications for practice were discussed in the cultural context.
Subject terms:
patients, palliative care, Chinese people, dying, families, family relations;