Journal of Social Work in End-of-Life and Palliative Care, 3(3), 2007, pp.39-58.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
Most childhood deaths in hospital happen in the paediatric intensive care unit (ICU), and providing palliative care for a dying child poses special challenges because of the acute, curative and often medically aggressive focus of the ICU setting. This study reports on a survey of 190 health care professionals working in ICU settings in a single children’s hospital in the United States. It finds
Most childhood deaths in hospital happen in the paediatric intensive care unit (ICU), and providing palliative care for a dying child poses special challenges because of the acute, curative and often medically aggressive focus of the ICU setting. This study reports on a survey of 190 health care professionals working in ICU settings in a single children’s hospital in the United States. It finds that having eight or more years experience influences how confident a doctor, nurse or other health care professional is in delivering the practical and medical aspects of palliative care, but that years of experience did not affect their confidence in psychosocial aspects of care, which remained limited. The implications for social work practice and research are discussed. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
Subject terms:
palliative care, attitudes, children, dying, health professionals;
British Medical Journal, 11.10.08, 2008, pp.848-851.
Publisher:
British Medical Association
A national consultation and prioritising exercise using a modified form of the nominal group technique was undertaken with healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland were included in the study. 74% of those invited (210/285) participated. The stage of life to which "end of life care" referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist’s workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.
A national consultation and prioritising exercise using a modified form of the nominal group technique was undertaken with healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland were included in the study. 74% of those invited (210/285) participated. The stage of life to which "end of life care" referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist’s workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.
Subject terms:
palliative care, social care professionals, care pathways, death, dying, end of life care, health professionals;
This report offers advice for any doctor on holding conversations with patients after the diagnosis of a progressive or terminal condition, including frailty. It highlights professional reluctance to engage in conversations with patients about uncertainty, resuscitation status and death. Barriers identified include culture, confidence of practitioners and practicalities. It also provides some ‘mythbusters’ to get physicians thinking. Key recommendations in the report include: asking patients if they would like to have the conversation and how much information they would want; for all healthcare professionals reviewing patients with chronic conditions, patients with more than one serious medical problem or terminal illness to initiate shared decision making including advance care planning in line with patient preferences; and the importance of language and involving all the relevant people that the patient has identified as being important to them. Links to tools and educational resources to support physicians and other healthcare professionals are included.
(Edited publisher abstract)
This report offers advice for any doctor on holding conversations with patients after the diagnosis of a progressive or terminal condition, including frailty. It highlights professional reluctance to engage in conversations with patients about uncertainty, resuscitation status and death. Barriers identified include culture, confidence of practitioners and practicalities. It also provides some ‘mythbusters’ to get physicians thinking. Key recommendations in the report include: asking patients if they would like to have the conversation and how much information they would want; for all healthcare professionals reviewing patients with chronic conditions, patients with more than one serious medical problem or terminal illness to initiate shared decision making including advance care planning in line with patient preferences; and the importance of language and involving all the relevant people that the patient has identified as being important to them. Links to tools and educational resources to support physicians and other healthcare professionals are included.
(Edited publisher abstract)
Subject terms:
hospitals, health professionals, dying, death, communication, case studies, end of life care, palliative care;
Journal of Social Work in End-of-Life and Palliative Care, 3(3), 2007, pp.5-22.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
Paediatric health care staff working with life threatening conditions are likely to experience high levels of stress, and this paper reports on a case study of training and consultation delivered by two clinical social workers to staff on issues relating to grief, trauma and chronic illness. Two workshops on these themes led to a request for ongoing support on a monthly basis for two groups of staff, one dealing with chronically and terminally ill children, and the other with children admitted to the emergency department. The different practice contexts of the two groups produced different responses and needs. The chronic care group, for example, faced problems of personal grief when children they had known for several years died, while the emergency group had a greater need to deny personal involvement in order to be able to function in highly pressured and stressful circumstances. While both may benefit from ‘holding environments’ in which they can come to terms with strong emotions, their attitudes towards them may be quite different. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
Paediatric health care staff working with life threatening conditions are likely to experience high levels of stress, and this paper reports on a case study of training and consultation delivered by two clinical social workers to staff on issues relating to grief, trauma and chronic illness. Two workshops on these themes led to a request for ongoing support on a monthly basis for two groups of staff, one dealing with chronically and terminally ill children, and the other with children admitted to the emergency department. The different practice contexts of the two groups produced different responses and needs. The chronic care group, for example, faced problems of personal grief when children they had known for several years died, while the emergency group had a greater need to deny personal involvement in order to be able to function in highly pressured and stressful circumstances. While both may benefit from ‘holding environments’ in which they can come to terms with strong emotions, their attitudes towards them may be quite different. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
Subject terms:
long term conditions, stress, support groups, children, dying, emergency health services, emotions, grief, health professionals;
Gerontologist, 42(Special Issue III), October 2002, pp.24-33.
Publisher:
Oxford University Press
The healing professions should serve the needs of patients as whole persons. Persons can be considered beings-in-relationship, and illness can be considered a disruption in biological relationships that in turn affects all the other relational aspects of a person. Spirituality concerns a person's relationship with transcendence. Therefore, genuinely holistic health care must address the totality of the patient's relational existence-physical, psychological, social, and spiritual. The literature suggests that many patients would like health professionals to attend to their spiritual needs, but health professionals must be morally cautious and eschew proselytizing in any form. Four general domains for measuring various aspects of spirituality are distinguished: religiosity, religious coping and support, spiritual well-being, and spiritual need. A framework for understanding the interactions between these domains is presented.
The healing professions should serve the needs of patients as whole persons. Persons can be considered beings-in-relationship, and illness can be considered a disruption in biological relationships that in turn affects all the other relational aspects of a person. Spirituality concerns a person's relationship with transcendence. Therefore, genuinely holistic health care must address the totality of the patient's relational existence-physical, psychological, social, and spiritual. The literature suggests that many patients would like health professionals to attend to their spiritual needs, but health professionals must be morally cautious and eschew proselytizing in any form. Four general domains for measuring various aspects of spirituality are distinguished: religiosity, religious coping and support, spiritual well-being, and spiritual need. A framework for understanding the interactions between these domains is presented.
Subject terms:
interpersonal relationships, needs, older people, personality, spirituality, dying, ethics, health care, health professionals;
Gerontologist, 42(Special Issue III), October 2002, pp.34-39.
Publisher:
Oxford University Press
... or the expression of fear and confusion. These examples show that the broadly conceived yet sometimes abstract societal ideal of "humane" dying may be challenged by actual family perspectives-be they clear-cut or indecisive, identifiable as specifically religious or apparently secular. They are one feature of how vulnerability at the end of life is engaged and one expression of a variable that contributes
"Meaning" not only is located in the patient, but also resides in the family, in the health care provider, and in the communication among them as well. Its expression will emerge in negotiations about care and about "the right thing" to do. What constitutes "the religious" or "the spiritual" may not be distinguishable from the articulation of moral convictions, the murmuring of desperate hopes, or the expression of fear and confusion. These examples show that the broadly conceived yet sometimes abstract societal ideal of "humane" dying may be challenged by actual family perspectives-be they clear-cut or indecisive, identifiable as specifically religious or apparently secular. They are one feature of how vulnerability at the end of life is engaged and one expression of a variable that contributes to the ways in which hospital deaths occur.
Subject terms:
hospitals, interpersonal relationships, needs, older people, spirituality, dying, families, ethics, health care, health professionals;
Social Work in Health Care, 35(3), October 2002, pp.37-51.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
This article presents an approach to ethical decision-making at the end of life that is more inclusive of the patient's family and has the potential to advance social work practice in end-of-life care. Initial attention is given to how psychosocial and bioethical perspectives and practices interact to shape understanding of moral issues in end-of-life decisions. Morally relevant principles are often adapted from contextual therapy as being useful for including more of a family focus and viewing ethical decision-making at the end of life as a family process. Specifically, focus is on exploring the ethical dynamics of family systems that impact the decision-making process and translating psychosocial insight into ethical discussions that are supportive of families.
This article presents an approach to ethical decision-making at the end of life that is more inclusive of the patient's family and has the potential to advance social work practice in end-of-life care. Initial attention is given to how psychosocial and bioethical perspectives and practices interact to shape understanding of moral issues in end-of-life decisions. Morally relevant principles are often adapted from contextual therapy as being useful for including more of a family focus and viewing ethical decision-making at the end of life as a family process. Specifically, focus is on exploring the ethical dynamics of family systems that impact the decision-making process and translating psychosocial insight into ethical discussions that are supportive of families.
Subject terms:
rights, suicide, therapies, therapy and treatment, death, decision making, dying, families, ethics, health professionals;
... In palliative care, the ‘unit of care’ comprises both patient and family/informal carers, with the latter often helping with key tasks, such as symptom management, personal care and medication administration, saving the health system money and improving the quality of life of dying patients. Unmet needs are often realised and reported by these informal carers. These roles can have negative emotional,
This book is an empirical, evidence-based, practical guide, compiled by a multi-disciplinary group of experts from the UK, Australia, USA, Canada, and Zimbabwe. It aims to enable health and social care professionals working with terminally ill patients, to assess and respond to family, and informal (e.g. close friends, neighbours) carer needs at home, in care home, hospital or hospice settings. In palliative care, the ‘unit of care’ comprises both patient and family/informal carers, with the latter often helping with key tasks, such as symptom management, personal care and medication administration, saving the health system money and improving the quality of life of dying patients. Unmet needs are often realised and reported by these informal carers. These roles can have negative emotional, physical, financial and social implications for the carer, and evidence-based strategies for support by professionals are key. The 15 chapters of text cover topics important in informal care such as communication, cultural and spiritual dimensions, ethics and legal considerations, needs and carer satisfaction assessment, care at home, in care homes, in hospitals and hospices, care of terminally ill children, care of those with advanced cancer, organ failure, and neurodegenerative diseases, and support for the bereaved. The editors conclude with a look into the future of care-giving by calling for further research, development of new social policies and the adoption of new clinical practices.
Subject terms:
informal care, neighbours, palliative care, quality of life, social care professionals, terminal illness, unmet need, carers, dying, families, friendship, health professionals;
WERTH James L., LEWIS Mary M., RICHMOND Jessica M.
Journal article citation:
Journal of Forensic Psychology Practice, 9(1), January 2009, pp.82-91.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia
This paper looks at the ways psychologists can assist dying people, their families and loved ones, with an emphasis on facilitating end-of-life (EOL) decision making through psychological assessment and intervention. The authors stress the importance of the health professional’s competence, conduct and awareness of his/her own bias and stereotyped attitudes while providing services to dying people, their families and loved ones. This commentary on recent and past literature on this topic is broken into sections entitled, EOL terminology, ethical and legal issues, evaluations and assessments of dying people making EOL decisions, cultural considerations, professional competence, attitudes and beliefs.
This paper looks at the ways psychologists can assist dying people, their families and loved ones, with an emphasis on facilitating end-of-life (EOL) decision making through psychological assessment and intervention. The authors stress the importance of the health professional’s competence, conduct and awareness of his/her own bias and stereotyped attitudes while providing services to dying people, their families and loved ones. This commentary on recent and past literature on this topic is broken into sections entitled, EOL terminology, ethical and legal issues, evaluations and assessments of dying people making EOL decisions, cultural considerations, professional competence, attitudes and beliefs.
Subject terms:
intervention, palliative care, psychology, stereotyped attitudes, suicide, terminal illness, training, assessment, decision making, cultural identity, dying, families, euthanasia, health professionals;
This book looks at the growing international research on resilience at a personal, social, organisational and community level and how it applies to palliative and end of life care. Over twenty professionals provide a detailed study of all key aspects of palliative care presented through a resilience perspective. This book offers insights into how, at all levels of planning and delivering palliative care, there are many opportunities to maximise coping, facilitate change, build an infrastructure for self help, and increase the capacity of teams and organisations. In addition, this book also examines the effect the topic has on the carers and health professionals, and the stresses that can be experienced on a day to day basis.
This book looks at the growing international research on resilience at a personal, social, organisational and community level and how it applies to palliative and end of life care. Over twenty professionals provide a detailed study of all key aspects of palliative care presented through a resilience perspective. This book offers insights into how, at all levels of planning and delivering palliative care, there are many opportunities to maximise coping, facilitate change, build an infrastructure for self help, and increase the capacity of teams and organisations. In addition, this book also examines the effect the topic has on the carers and health professionals, and the stresses that can be experienced on a day to day basis.
Subject terms:
hospices, medical treatment, nursing homes, older people, palliative care, quality of life, resilience, terminal illness, dying, good practice, health professionals;