A good death from the perspective of patients with severe illness and advance care planning (ACP) in patients near end-of-life

A good death from the perspective of patients with severe illness and advance care planning (ACP) in patients near end-of-life PDF Author: Lisa Kastbom
Publisher: Linköping University Electronic Press
ISBN: 9179297196
Category : Electronic books
Languages : en
Pages : 83

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Book Description
Previous research has indicated that what constitutes a good death is heterogenic and complex although there are some recurrent themes and similarities regardless individual background factors. Studies on advance care planning (ACP), i.e. making proactive plans regarding content of care and treatment limitations, on nursing home (NH) patients are rare. Positive effects of ACPs are shown, but also that these often are lacking. The overall aim with this thesis was to explore the perceptions of a good death from the perspective of patients with severe illness and to investigate, from different perspectives, experiences of ACP in a NH context. In paper I, patients with cancer in a palliative phase were interviewed on their perceptions of a good death. Death was viewed as a process and previous experiences on the death of others influenced their own perceptions. A good death was associated with living with the prospect of imminent death, preparing oneself and others for one’s death and dying comfortably, e.g. without suffering, with independence and with social relations intact. Some were comforted by their belief that death is predetermined, and that after death, there is something else. Others felt uncomfortable when they viewed death as the end of the existence. In paper II, nurses and physicians were interviewed on their experiences of the factors that shape the ACP process in NHs. Exploration of the patient’s preferences regarding content of care and treatment limitations was important, as well as integration of the patient’s preferences and the views of the family members and staff concerning these questions. ACP documentation had to be clear, updated and available for staff and the implementation and reevaluation of ACP were also considered important, according to the participants. Significance of clinicians’ perceiving beneficence as well as fear of accusations of maleficence were shown to be essential factors to contemplate. In a retrospective chart review (paper III), medical records of 367 deceased NH patients were analysed. A high prevalence of ACP was shown, using two different definitions of ACP (ACP I and ACP II). Moreover, adherence to the ACP content was strong and positive associations were seen between ACP and variables of the three research aims, such as: diagnosis (dementia), physician attendance at NH and end-of-life (EOL) care. In paper IV, family members of deceased NH patients were interviewed on their experiences of ACP in NHs. EOL issues were challenging to talk about, although the family members appreciated staff raising these questions. The patient’s preferences were sometimes explicitly or implicitly communicated. However, in some cases, family members had a feeling of the patient’s preferences, although they had not been clearly communicated. Everyday details symbolised staff commitment. The family members viewed the nurse as central. The physician was described as absent and ACP meetings often went unnoticed. Both involvement and lack of involvement could cause the family members feelings of guilt. In conclusion, we found that what constitutes a good death is highly individual, although recurrent themes are seen. EOL conversations are important and challenging and need staff training and experience. It seems important to support healthcare staff not only to initiate ACP in NH patients, but also to involve the patient and family members in the ACP and planning EOL care. Making proactive plans regarding content of care including treatment limitations, could enable patient autonomy, optimise the chances for the patient to experience a good death and enhance for the family members during the dying trajectory and after the patient’s death.

A good death from the perspective of patients with severe illness and advance care planning (ACP) in patients near end-of-life

A good death from the perspective of patients with severe illness and advance care planning (ACP) in patients near end-of-life PDF Author: Lisa Kastbom
Publisher: Linköping University Electronic Press
ISBN: 9179297196
Category : Electronic books
Languages : en
Pages : 83

Get Book Here

Book Description
Previous research has indicated that what constitutes a good death is heterogenic and complex although there are some recurrent themes and similarities regardless individual background factors. Studies on advance care planning (ACP), i.e. making proactive plans regarding content of care and treatment limitations, on nursing home (NH) patients are rare. Positive effects of ACPs are shown, but also that these often are lacking. The overall aim with this thesis was to explore the perceptions of a good death from the perspective of patients with severe illness and to investigate, from different perspectives, experiences of ACP in a NH context. In paper I, patients with cancer in a palliative phase were interviewed on their perceptions of a good death. Death was viewed as a process and previous experiences on the death of others influenced their own perceptions. A good death was associated with living with the prospect of imminent death, preparing oneself and others for one’s death and dying comfortably, e.g. without suffering, with independence and with social relations intact. Some were comforted by their belief that death is predetermined, and that after death, there is something else. Others felt uncomfortable when they viewed death as the end of the existence. In paper II, nurses and physicians were interviewed on their experiences of the factors that shape the ACP process in NHs. Exploration of the patient’s preferences regarding content of care and treatment limitations was important, as well as integration of the patient’s preferences and the views of the family members and staff concerning these questions. ACP documentation had to be clear, updated and available for staff and the implementation and reevaluation of ACP were also considered important, according to the participants. Significance of clinicians’ perceiving beneficence as well as fear of accusations of maleficence were shown to be essential factors to contemplate. In a retrospective chart review (paper III), medical records of 367 deceased NH patients were analysed. A high prevalence of ACP was shown, using two different definitions of ACP (ACP I and ACP II). Moreover, adherence to the ACP content was strong and positive associations were seen between ACP and variables of the three research aims, such as: diagnosis (dementia), physician attendance at NH and end-of-life (EOL) care. In paper IV, family members of deceased NH patients were interviewed on their experiences of ACP in NHs. EOL issues were challenging to talk about, although the family members appreciated staff raising these questions. The patient’s preferences were sometimes explicitly or implicitly communicated. However, in some cases, family members had a feeling of the patient’s preferences, although they had not been clearly communicated. Everyday details symbolised staff commitment. The family members viewed the nurse as central. The physician was described as absent and ACP meetings often went unnoticed. Both involvement and lack of involvement could cause the family members feelings of guilt. In conclusion, we found that what constitutes a good death is highly individual, although recurrent themes are seen. EOL conversations are important and challenging and need staff training and experience. It seems important to support healthcare staff not only to initiate ACP in NH patients, but also to involve the patient and family members in the ACP and planning EOL care. Making proactive plans regarding content of care including treatment limitations, could enable patient autonomy, optimise the chances for the patient to experience a good death and enhance for the family members during the dying trajectory and after the patient’s death.

Dying in America

Dying in America PDF Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309303133
Category : Medical
Languages : en
Pages : 470

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Book Description
For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.

Advance Care Planning in End of Life Care

Advance Care Planning in End of Life Care PDF Author: Keri Thomas
Publisher: Oxford University Press
ISBN: 0198802137
Category : Medical
Languages : en
Pages : 337

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Book Description
ACP is an essential part of end of life care with patients improving their chances of 'a good death' by creating plans with their families and carers. This new edition gives a comprehensive overview of ACP, explores a wide range of issues and practicalities in providing end of life care, and offers a worldwide perspective.

Compassionate Communities

Compassionate Communities PDF Author: Klaus Wegleitner
Publisher: Routledge
ISBN: 1317565061
Category : Social Science
Languages : en
Pages : 257

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Book Description
Compassionate communities are communities that provide assistance for those in need of end of life care, separate from any official heath service provision that may already be available within the community. This idea was developed in 2005 in Allan Kellehear’s seminal volume- Compassionate Cities: Public Health and End of Life Care. In the ensuing ten years the theoretical aspects of the idea have been continually explored, primarily rehearsing academic concerns rather than practical ones. Compassionate Communities: Case Studies from Britain and Europe provides the first major volume describing and examining compassionate community experiments in end of life care from a highly practical perspective. Focusing on community development initiatives and practice challenges, the book offers practitioners and policy makers from the health and social care sectors practical discussions on the strengths and limitations of such initiatives. Furthermore, not limited to providing practice choices the book also offers an important and timely impetus for other practitioners and policy makers to begin thinking about developing their own possible compassionate communities. An essential read for academic, practitioner, and policy audiences in the fields of public health, community development, health social sciences, aged care, bereavement care, and hospice & palliative care, Compassionate Communities is one of only a handful of available books on end of life care that takes a strong health promotion and community development approach.

Health Promoting Palliative Care

Health Promoting Palliative Care PDF Author: Allan Kellehear
Publisher: Oxford University Press, USA
ISBN: 9780195507850
Category : Health promotion
Languages : en
Pages : 0

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Book Description
Health promotion has traditionally focused on illness prevention, targeting the fit and well. But what about those who live with life-threatening or terminal illness? Health -Promoting Palliative Care proposes a model of care that goes beyond simply providing care in the final stages of lifeand draws on critical and participatory principles from both palliative care and health promotion. Emphasising early intervention and a social approach to the problems and experiences of dying, it encourages service providers, family members, and the dying themselves to seek ways to promoteemotional, social, and spiritual well-being, as well as physical health. The book begins by looking at the ways in which health promotion can be introduced to palliative care. It goes on to outline the goals and practice principles of a health promoting palliative care. Later chapters addresspractice strategies relevant to health and death education, social supports, interpersonal reorientation, and environmental and policy development. Health Promoting Palliative Care is a valuable, practical, and accessible resource for practitioners working alone or in health care institutions, forstudents of the health sciences, social work, or pastoral care, and for those working in policy areas.

Advance Care Planning

Advance Care Planning PDF Author: Leah Rogne, Ph.D.
Publisher: Springer Publishing Company
ISBN: 0826110215
Category : Family & Relationships
Languages : en
Pages : 402

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Book Description
Print+CourseSmart

Improving Palliative Care for Cancer

Improving Palliative Care for Cancer PDF Author: National Research Council
Publisher: National Academies Press
ISBN: 0309074029
Category : Medical
Languages : en
Pages : 344

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Book Description
In our society's aggressive pursuit of cures for cancer, we have neglected symptom control and comfort care. Less than one percent of the National Cancer Institute's budget is spent on any aspect of palliative care research or education, despite the half million people who die of cancer each year and the larger number living with cancer and its symptoms. Improving Palliative Care for Cancer examines the barriersâ€"scientific, policy, and socialâ€"that keep those in need from getting good palliative care. It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.

Deciding to Engage in Advance Care Planning

Deciding to Engage in Advance Care Planning PDF Author: Karen Joy Vander Laan
Publisher:
ISBN:
Category : Advance directives (Medical care)
Languages : en
Pages : 462

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Book Description


Let's Talk about Death (over Dinner)

Let's Talk about Death (over Dinner) PDF Author: Michael Hebb
Publisher: Da Capo Lifelong Books
ISBN: 0738235318
Category : Self-Help
Languages : en
Pages : 214

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Book Description
For readers of Being Mortal and When Breath Becomes Air, the acclaimed founder of Death over Dinner offers a practical, inspiring guide to life's most difficult yet important conversation. Of the many critical conversations we will all have throughout our lifetime, few are as important as the ones discussing death—and not just the practical considerations, such as DNRs and wills, but what we fear, what we hope, and how we want to be remembered. Yet few of these conversations are actually happening. Inspired by his experience with his own father and countless stories from others who regret not having these conversations, Michael Hebb cofounded Death Over Dinner—an organization that encourages people to pull up a chair, break bread, and really talk about the one thing we all have in common. Death Over Dinner has been one of the most effective end-of-life awareness campaigns to date; in just three years, it has provided the framework and inspiration for more than a hundred thousand dinners focused on having these end-of-life conversations. As Arianna Huffington said, "We are such a fast-food culture, I love the idea of making the dinner last for hours. These are the conversations that will help us to evolve." Let's Talk About Death (over Dinner) offers keen practical advice on how to have these same conversations—not just at the dinner table, but anywhere. There's no one right way to talk about death, but Hebb shares time—and dinner—tested prompts to use as conversation starters, ranging from the spiritual to the practical, from analytical to downright funny and surprising. By transforming the most difficult conversations into an opportunity, they become celebratory and meaningful—ways that not only can change the way we die, but the way we live.

Neuropalliative Care

Neuropalliative Care PDF Author: Claire J. Creutzfeldt
Publisher: Springer
ISBN: 3319932152
Category : Medical
Languages : en
Pages : 310

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Book Description
This comprehensive guide thoroughly covers all aspects of neuropalliative care, from symptom-specific considerations, to improving communication between clinicians, patients and families. Neuropalliative Care: A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease addresses clinical considerations for diseases such as dementia, multiple sclerosis, and severe acute brain injury, as well discussing the other challenges facing palliative care patients that are not currently sufficiently met under current models of care. This includes methods of effective communication, supporting the caregiver, how to make difficult treatment decisions in the face of uncertainty, managing grief, guilt and anger, and treating the pain itself. Written by leaders in the field of neuropalliative care, this book is an exceptional, well-rounded resource of neuropalliative care, serving as a reference for all clinicians caring for patients with neurological disease and their families: neurologists and palliative care specialists, physicians, nurses, chaplains, social workers, as well as trainees in these areas.