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Alzheimer disease afflicts more than twelve million people worldwide, and its incidence is increasing at a staggering rate. People with the disorder are living longer than have those in previous generations, and they require interventions for quality-of-life issues associated with palliative care. However, the symptoms of Alzheimer disease often fail to place such persons into settings where palliative care resources are available to them. Indeed, clinicians and other caregivers may be unsure about what constitutes effective palliation in these cases. At the same time, the ethical issues involved in providing end-of-life care to persons with Alzheimer disease remain on the margins of mainstream bioethics. In Ethical Foundations of Palliative Care for Alzheimer Disease, leading ethicists and clinicians from the United States and Europe explore ethical and scientific concerns about the diagnosis and prognosis of Alzheimer disease, challenges arising from applying palliative procedures to its symptoms, key philosophical and theological concepts central to our understanding of the disease and to end-of-life decisions, and the changing patterns of relevant medical, social, and economic policies. Cross-cultural, multidisciplinary, and state-of-the-art, this volume is a unique and important resource for bioethicists, clinicians, and policy makers everywhere. Contributors: David A. Bennahum, M.D., University of New Mexico; Pierre Boitte, Ph.D., Catholic University of Lille, France; Roger A. Brumback, M.D., Creighton University Medical Center; Wim J. M. Dekkers, M.D., Ph.D., University Medical Centre Nijmegen, The Netherlands; Elizabeth Furlong, R.N., Ph.D., J.D., Creighton University Medical Center; Eugenijus Gefenas, M.D., Ph.D., Vilnius University, Lithuania; Bert Gordijn, Ph.D., University Medical Centre Nijmegen, The Netherlands; Amy M. Haddad, R.N., Ph.D., Creighton University Medical Center; Søren Holm, M.D., Ph.D., Dr.Med.Sci., University of Manchester; Franz J. Illhardt, D.D., Ph.D., Freiburg University; Rien Janssens, Ph.D., University Medical Centre Nijmegen, The Netherlands; Givi Javashvili, M.D., Ph.D., State Medical Academy of Georgia, Tbilisi; Judith Lee Kissell, Ph.D., Creighton University Medical Center; Gunilla Nordenram, D.D.S., Ph.D., Karolinska Institute, Stockholm; Richard L. O'Brien, M.D., Creighton University Medical Center; Marcel G. M. Olde Rikkert, M.D., Ph.D., University Medical Centre Nijmegen, The Netherlands; Winifred J. Ellenchild Pinch, R.N., Ed.D., Creighton University Medical Center; Patricio F. Reyes, M.D., Creighton University Medical Center; Anne-Sophie Rigaud, M.D., Ph.D., Hôpital Broca, Paris; Linda S. Scheirton, Ph.D., Creighton University Medical Center; Jos V. M. Welie, M.Med.S., J.D., Ph.D., Creighton University Medical Center.
This volume demonstrates how hospice care leads to improved quality of life for patients with terminal dementia and their families. Much of the information is based on the successful 10-year experience of the E.N. Rogers Memorial Hospital, where the first palliative care program for the management of patients with advanced dementia was developed. The book discusses Alzheimer's and other progressive dementias and reviews the clinical problems encountered, including infections, eating difficulties, and behavioral problems. It further addresses how to implement hospice care programs for these patients and the ethical aspects involved. This volume will be of compelling importance to nurses, physicians, and social workers involved in hospice or home care of patients at the last stages of dementia.
Dementia: The Basics provides the reader with a clear and compassionate introduction to dementia and an accessible guide to dealing with different parts of the dementia journey, from pre-diagnosis and diagnosis to post-diagnostic support, increasing care needs and end of life care. Co-authored by an academic, a person living with dementia and a family carer, the book endeavours to raise awareness of dementia, challenge stereotypical and negative ideas about what it means to have dementia and champion a society where people living with dementia can be active as they wish for as long as possible. The authors present an overview of current research at each step of the dementia journey as well as including knowledge from lived experience, enhancing understanding and challenging thinking about what it might be like to live with a diagnosis or to care for a loved one. As a whole, the book emphasises the importance of prioritising the person living with dementia, as well as considering the impact of what any initiative or action might mean for them, their families and their care supporters. Offering both an accessible introduction to dementia and practical tools, this book will be ideal for health and social care professionals, students of social care, health care and nursing, people with dementia, carers and anyone wanting to understand more about the condition.
The SAGE Handbook of Healthcare Ethics is an influential collection of work by leading scholars on the fundamental and emerging themes which define healthcare ethics. This authoritative Handbook brings together experts with backgrounds in philosophy, sociology, law, public policy and the health professions and reflects the increasing impact of globalization and the dynamic advances in the fields of bioscience and genetics, which keep ethics at the centre of debates about the future direction of healthcare. Combining international and interdisciplinary perspectives, the Handbook provides a cutting-edge account of debates in five key areas: Health Care Ethics in an Era of Globalization Beginning and End of Life Vulnerable Populations Research Ethics and Technologies Public Health and Human Rights
Palliative Care Within Mental Health: Ethical Practice explores the comprehensive concerns and dilemmas that occur surrounding people experiencing mental health problems and disorders. Working beyond narrow, stereotypical definitions of palliative care as restricted to terminal cancer patients, this balanced and thought-provoking volume examines the many interrelated issues that face the individual, families, and caregivers, setting the groundwork for improved, ethical relationships and interventions. Chapters by experts and experienced practitioners detail the challenges, concerns, and best practices for ethical care and responses in a variety of individual and treatment contexts. This is an essential and thoughtful new resource for all those involved in the fast-developing field of palliative mental health.
Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care.
Choices in Palliative Care brings together leading experts to spotlight core issues in the field and identify ways PC can fill gaps in current care systems. This far-sighted volume redefines palliative care as interdisciplinary and integrative, bridging acute and long-term care to respond to clients’ evolving needs. Those teaching health service delivery courses will find this material especially useful.
We are now engaged in a movement that de-emphasizes the reliance on institutional forms of long-term care for disabled persons needing ongoing daily living assistance and converges on the use of non-institutional service providers abnd residential settings. In this latest edition of Ethics, Law and Aging Review , Kapp and ten expert contributors help us examine the forces and potential for changeing the long-term care industry (both positively and negatively) and address this paradigm shift from the inpersonal, public psychiatric institutions of the 1960s and 1970s to the present-day assisted living environments that have been fueled by economic, social, polictical, and legal forces. Most important ly, this volume identifies obstaclesto change and enlighten service providers, advocates, and key policy makers to the pitfalls that can largely interfere with positive outcomes as a result of long-term care deinstitutionalization. Topics explored include: Community-based alternatives for older adults with serious mental illness Failing consumer-directed alternatives to nursing homes Ethics of Medicare privatization
Drawing on extensive data including news media reports and commentaries, documentaries, courts and court reports, films, websites, professional literature and government and non-government agencies, this book explores the 'Alzheimerisation' of the euthanasia debate, examining the shift in recent years in public attitudes towards the desirability and moral permissibility of euthanasia as an end-of-life 'solution' for people living with the disease - not just at its end stage, but also at earlier stages. With attention to media representations and public understandings of Alzheimer's disease, Alzheimer's Disease, Media Representations and the Politics of Euthanasia sheds light on the processes contributing to these changes in public opinion, investigating the drivers of vexed political debate surrounding the issue and examining the manner in which both sides of the euthanasia debate mobilise support, portray their opponents and make use of media technologies to frame the terms of discourse. Paving the way for a greater level of intellectual honesty with regard to an issue carrying significant policy implications, this book will be of interest to scholars of media and communication, social movements and political communication, and the sociology of health and medicine, as well as researchers and professionals in the fields of palliative and end of life care.
“In this masterful book, Julian Hughes makes a convincing case that many acts in clinical and care practice are ethical matters. Hughes takes us gently through a jungle of philosophical ideas and explores a series of ethical issues in dementia care, such as diagnosis, covert medication and end of life care. His humanity shines through as he favours a values-based approach to care, and concludes by declaring (in the spirit of Tom Kitwood) that the person must be placed first in order to do what is right and good for people living with dementia. A must-have volume for practitioners, social scientists and enlightened general readers.” Tom Dening, Professor of Dementia Research, School of Medicine, University of Nottingham, UK “This book is totally brilliant. The outstanding author Dr. Julian Hughes must now be considered the foremost ethicist of his generation when it comes to caring for individuals with dementia … This is now the book that everyone who cares about dementia and ethics must read, discuss, and implement. It is a huge contribution.” Stephen G. Post PhD, Director, Center for Medical Humanities, Compassionate Care & Bioethics Stony Brook University School of Medicine, USA “This book should be an essential read for all of us who support and navigate the ethical issues relating to people with dementia and their families.” Paul Edwards, Director of Clinical Services, Dementia UK Ethical issues are involved in every decision that is made in connection with someone living with dementia – from decisions about care and treatment to decisions about research and funding. This book encourages the reader to reconsider ethics in dementia care with the use of ‘patterns of practice’, an innovative idea developed by the author. The book highlights the importance of understanding the person’s narrative, of good communication, high quality care, and expert interpretation of the meaning of situations for people living with dementia. This book: • Reviews ethical theories and approaches in connection with dementia care • Considers issues such as such as stigma, quality of life, personhood, and citizenship in relation to dementia • Looks at issues relevant to research ethics • Presents case vignettes to highlight a complete spectrum of ethical issues that arise in dementia care • Is accessibly written for multiple audiences – from people living with dementia to practitioners Dementia and Ethics Reconsidered is a comprehensive account of thought and practice in relation to ethical issues that arise in the context of dementia care, which seeks to show how ethical thinking can be put into practice and prove relevant to day-to-day experience. The Reconsidering Dementia Series is an interdisciplinary series published by Open University Press that covers contemporary issues to challenge and engage readers in thinking deeply about the topic. The dementia fi eld has developed rapidly in its scope and practice over the past ten years and books in this series will unpack not only what this means for the student, academic and practitioner, but also for all those affected by dementia. Series Editors: Dr Keith Oliver and Professor Dawn Brooker MBE. Julian C. Hughes was a consultant in old age psychiatry. Having trained in both philosophy and medicine, he was appointed honorary professor of philosophy of ageing at Newcastle University, UK and subsequently professor of old age psychiatry at the University of Bristol, UK. He was deputy chair of the Nuffield Council on Bioethics, UK.