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Books > Medicine > Other branches of medicine > Palliative medicine
Hospice care is one of the fastest-growing segments of the U. S. healthcare system, a trend that is expected to accelerate as the median age of the population continues to rise over the next three decades. Despite over forty percent of the population now dying while on hospice care, very little has been published on the ethical opportunities and challenges experienced in the everyday lives of those giving and receiving hospice care. This book is the first comprehensive collection devoted to analyzing distinctive ethical issues arising in the delivery of hospice care and designed to promote best ethical practices for hospice care professionals and organizations. Thirteen newly commissioned chapters by seventeen hospice experts populate three thematic sections of the book, each devoted to an aspect of the intersection between ethics and hospice care. Contributors have unique qualifications and abilities to articulate and respond to ethically significant phenomena that - while not always unique to hospice care - arise in especially poignant and complex ways when caring for patients enrolled in hospice. As the shift or return to home-based care at the end of life continues, hospice professionals and programs will be faced with a broader array of terminal illnesses, cultural beliefs and traditions, and patient and family values than ever before. Hospice will no longer be tailored solely to the final stage of cancer, but will need to accommodate patients whose illnesses are variable in their progression and whose treatment plans include many medical options. The ethical orientations and frameworks that have served hospice for the past 50 years will need to be supplemented and refined if hospice is to fulfill this changing social mission. Hospice Ethics explores a new paradigm for hospice ethics from a multi-disciplinary and provides an important educational resource for professional training in end of life care.
This book is a thoughtful, informative, and practical guide for
anyone involved in caring for the seriously and chronically ill or
dying. The connection between spirituality and medicine has been
receiving a lot of attention in both the scientific and lay presses
recently, but research and
Decisions about life-sustaining treatment are often ethically challenging for patients, surrogate decision-makers, and health care professionals. Providing safe, effective, and compassionate care near the end of life is a priority for health care organizations. In times of uncertainty, crisis, or reflection, and in efforts to improve health care for seriously ill patients, guidelines can help. This is the first updated, expanded edition of The Hastings Center's 1987 Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying, which shaped the ethical and legal framework for decision-making on treatment and end-of-life care in the United States. The new edition, the product of an authoritative consensus process, incorporates 25 years of research, innovation, and developments in law and policy. It summarizes the current framework for making good decisions about treatment and care and identifies educational and organizational goals for health care systems. It covers care planning, decision-making for adults and for children, care transitions, the determination of death, and the policies and processes that support good care at the bedside. It also addresses the psychological and social dimensions of care near the end of life, with attention to effective communication with patients and loved ones and among team members. This book is written for physicians, nurses, and other clinicians in hospitals, nursing homes, home care, and hospice. It is structured for ease of reference during difficult clinical situations and includes extensive practical recommendations supported by print and online resources. This book is also essential reading for clinical ethicists, ethics committee members, health lawyers, and medical and nursing directors. As the U.S. confronts the challenges of health care reform, an aging population, increasing technological capacity to extend life, and serious cost implications, The Hastings Center Guidelines are invaluable to educators, scholars, and policymakers.
Heart failure occurs in almost epidemic proportions, placing a huge burden on both the healthcare system, and sufferers and their families. This can only rise over coming years as the ageing population, particularly in industrialized countries, increasingly suffers from heart failure and its related comorbidities. The care of this group of patients has evolved significantly over recent years as our knowledge and understanding of the pathophysiology of heart failure has developed. It has become evident that supportive care is integral to comprehensive heart failure care, and this book provides an evidence-based overview of heart failure aetiology, its management, and the supportive care required by patients throughout the course of their disease. Supportive Care in Heart Failure integrates the complexities of heart failure care, bridging knowledge bases from cardiology and cardiothoracic surgery, general medicine and palliative care. The book reviews essential information about epidemiology and pathophysiology of heart failure, and evidence-based medical, device, surgical and interdisciplinary management. It addresses the evaluation and management of quality of life, common symptoms and problems associated with heart failure, and the holistic approach to supportive care throughout the course of the illness through the end of life. Prognostication, communication, and ethical decision making are reviewed in detail. Heart failure has traditionally presented a challenge to physicians, as a generally progressive condition with significant symptoms, a poor quality of life, and high mortality. But by applying the principles of palliative medicine, it is possible to offer a supportive care approach that synthesizes the experience of both the heart failure specialist and the palliative care physician, and offers the best possible quality of care to this group of patients.
In Death, Dying, and Organ Transplantation: Reconstructing Medical
Ethics at the End of Life, Miller and Truog challenge fundamental
doctrines of established medical ethics. They argue that the
routine practice of stopping life support technology in hospitals
causes the death of patients and that donors of vital organs
(hearts, lungs, liver, and both kidneys) are not really dead at the
time that their organs are removed for life-saving transplantation.
These practices are ethically legitimate but are not compatible
with traditional rules of medical ethics that doctors must not
intentionally cause the death of their patients and that vital
organs can be obtained for transplantation only from dead donors.
THE SUNDAY TIMES BESTSELLER 'Impossible to read with dry eyes or an unaltered mindset' Sunday Times 'Illuminating and beautiful' Cathy Rentzenbrink What if everything you thought you knew about death was wrong? How should we prepare for the facts of dying and saying our goodbyes? And what if understanding death improved your life? By turns touching and tragic, funny and wise, With the End in Mind brings together Kathryn Mannix ' s lifetime of medical experience to tell powerful stories of life and death.
Surgical Palliative Care describes the principles and practice of surgery in the context of palliative and supportive care. Surgery is often considered too invasive to be useful in palliation and clinicians instinctively turn to radiotherapy, chemotherapy, and other drugs. Surgery, with increasingly minimal access techniques, may be simpler and less invasive than other treatments and produces excellent palliation. Indeed, most types of surgery are not curative and the aim of this book is to alert all concerned with palliative care to the usefulness and appropriateness of a surgical option. The text is divided into two sections; the first dealing with general issues, varying from quality of life measurement to spirituality, and the second illustrating their application in different specialties of surgery ranging from neurosurgery to urology. The book ends with a challenge to surgeons to change their perspective from curative surgery, in terms of simply cure or failure, to improvement in quality of life and relief of symptoms. Aimed primarily at palliative medicine and pain consultants, this book will also appeal to surgeons who increasingly need to know more about palliative care.
Hospital intensive care units have changed when and how we die-and not always for the better. The ICU is a new world, one in which once-fatal diseases can be cured and medical treatments greatly enhance our chances of full recovery. But, paradoxically, these places of physical healing can exact a terrible toll, and by focusing on technology rather than humanity, they too often rob the dying of their dignity. By some accounts, the expensive medical treatments provided in ICUs also threaten to bankrupt the nation. In an attempt to give patients a voice in the ICU when they might not otherwise have one, the living will was introduced in 1969, in response to several notorious cases. These documents were meant to keep physicians from ignoring patients' and families' wishes in stressful situations. Unfortunately, despite their aspirations, living wills contain static statements about hypothetical preferences that rarely apply in practice. And they created a process that isn't faithful to who we are as human beings. Further confusing difficult and painful situations, living wills leave patients with the impression that actual communication with their physicians has taken place, when in fact their deepest desires and values remain unaddressed. In this provocative and empathetic book, medical researcher and ICU physician Samuel Morris Brown uses stories from his clinical practice to outline a new way of thinking about life-threatening illness. Brown's approach acknowledges the conflicting emotions we have when talking about the possibility of death and proposes strategies by which patients, their families, and medical practitioners can better address human needs before, during, and after serious illness. Arguing that any solution to the problems of the inhumanity of intensive care must take advantage of new research on the ways human beings process information and make choices, Brown imagines a truly humane ICU. His manifesto for reform advocates wholeness and healing for people facing life-threatening illness.
New York Times Bestseller A poignant love letter to Bloom's husband and a passionate outpouring of grief, In Love reaffirms the power and value of human relationships. In January 2020, Amy Bloom travelled with her husband Brian to Switzerland, where he was helped by Dignitas to end his life while Amy sat with him and held his hand. Brian was terminally ill and for the last year of his life Amy had struggled to find a way to support his wish to take control of his death, to not submerge 'into the darkness of an expiring existence'. Written with piercing insight and wit, In Love is Bloom's intimate, authentic and startling account of losing Brian, first slowly to the disease of Alzheimer's, and then on becoming a widow. It charts the anxiety and pain of the process that led them to Dignitas, while never avoiding the complex ethical problems that are raised by assisted death. 'Poignant, kind, funny and ultimately redemptive' - Alain de Botton, author of The Course of Love 'In Love is a thrillingly beautiful, laser-eyed book about love, life, mortality and, most remarkably, about the ways in which no one of the three can be separated from the others' - Michael Cunningham, author of The Hours and A Home at the End of the World
On a blustery night, detectives from the Massachusetts State Police knocked on Amy Gleason's door. Gleason, along with fellow nurse Kim Hoy, had helped a patient deal with pain and suffering at the end of her life. Now the patient was dead, and the two nurses were being investigated for murder. Both believed they had done the right thing, but they had no idea what it would cost them. In this captivating and powerful true story, Dr. Lewis M. Cohen uses the experiences of Gleason, Hoy, and the nursing assistant who accused them of murder to explore what happens when decisions about end-of-life care shift from the hospital to the courtroom and the church. Tracing this issue from the uproar over Terri Schiavo's feeding tube to the controversial figure of Jack Kevorkian, and to the legitimate threat of serial killer medical professionals, Cohen goes behind the scenes on both sides of this debate. He examines how advances in modern medicine have given us tremendous tools for prolonging life but have also forced us to address how we treat patients who are dying and suffering.
Respiratory symptoms such as breathlessness and cough are common in patients with advancing and incurable disease. For example, cancer, chronic cardiac and pulmonary disease, progressive neuromuscular disorders and degenerative disorders all give rise to varying degrees of respiratory distress which adversely affects the patient's quality of life. In recent years, there has been significant growth into the palliation of respiratory symptoms leading to practical ways of giving relief in hospices, hospitals and at home. The second edition of this popular title in the Supportive Care series includes non-malignant respiratory diseases such as tuberculosis in AIDS patients, cystic fibrosis and ventilator-dependent patients, and focuses on aetiology and diagnosis and management, emphasising symptoms, quality of life and psychosocial support. The underlying theme of the book is the application of modern research-based knowledge, in a humane way, for patients with advancing disease.
Over a period of almost 10 years, the work of the Project on Death in America (PDIA) played a formative role in the advancement of end of life care in the United States. The project concerned itself with adults and children, and with interests crossing boundaries between the clinical disciplines, the social sciences, arts and humanities. PDIA engaged with the problems of resources in poor communities and marginalized groups and settings, and it attempted to foster collaboration across a range of sectors and organizations. Authored by medical sociologist David Clark, whose research career has focused on mapping, archiving and analyzing the history and development of hospice, palliative care and related end of life issues, this book examines the broad, ambitious conception of PDIA - which sought to 'transform the culture of dying in America' - and assesses PDIA's contribution to the development of the palliative care field and to wider debates about end of life care within American society. Chapters consider key issues and topics tackled by PDIA grantees which include: explorations of the meanings of death in contemporary American culture; the varying experiences of care at the end of life (in different settings, among different social and ethnic groups); the innovations in service development and clinical practice that have occurred in the US in response to a growing awareness of and debate about end of life issues; the emerging evidence base for palliative and end of life care in the US; the maturation of a field of academic and clinical specialization; the policy and legal issues that have shaped development, including the ethical debate about assisted suicide and the Oregon experience; the opportunities and barriers that have been encountered; and the prospects for future development. A final chapter captures developments and milestones in the field since PDIA closed in 2003, and some of the challenges going forward.
This comprehensive revision of the invaluable reference presents a rigorous survey of pain and palliative care phenomena across the lifespan and across disciplines. Grounded in the biopsychosocial viewpoint of its predecessor, it offers up-to-date understanding of assessments and interventions for pain, the communication of pain, common pain conditions and their mechanisms, and research and policy issues. In keeping with the current public attention to painkiller use and misuse, contributors discuss a full range of pharmacological and non-pharmacological approaches to pain relief and management. And palliative care is given expanded coverage, with chapters on interventive, ethical, and spiritual concerns. * Pain, intercultural communication, and narrative medicine. * Assessment of pain: tools, challenges, and special populations. * Persistent pain in the older adult: practical considerations for evaluation and management. * Acute to chronic pain: transition in the post-surgical patient. * Evidence-based pharmacotherapy of chronic pain. * Complementary and integrative health in chronic pain and palliative care. * The patient's perspective of chronic pain.* Disparities in pain and pain care. This mix of evolving and emerging topics makes the Second Edition of the Handbook of Pain and Palliative Care a necessity for health practitioners specializing in pain management or palliative care, clinical and health psychologists, public health professionals, and clinicians and administrators in long-term care and hospice.
aThis is a beautifully written account from the front lines of a
struggle between a federal drug war complex determined to keep
demonizing marijuana and the growing movement of patients and
doctors who have found marijuana to be a valuable medicine. Voters
in California and many other states have strongly supported the
patients. The moving stories in this book show why.a aChapkis and Webb have done a masterful job in describing the
intricacies of the drug debate and offer brilliant analysis on a
complex and controversial subject. Both baby boomers and the
current teenage population will find this book important and
compelling reading.a Marijuana as medicine has been a politically charged topic in this country for more than three decades. Despite overwhelming public support and growing scientific evidence of its therapeutic effects (relief of the nausea caused by chemotherapy for cancer and AIDS, control over seizures or spasticity caused by epilepsy or MS, and relief from chronic and acute pain, to name a few), the drug remains illegal under federal law. In Dying to Get High, noted sociologists Wendy Chapkis and Richard J. Webb investigate one community of seriously-ill patients fighting the federal government for the right to use physician-recommended marijuana. Based in Santa Cruz, California, the Wo/Menas Alliance for Medical Marijuana (WAMM) is a unique patient-caregiver cooperative providing marijuana free of charge to mostly terminally ill members. For a brief period in 2004, it even operated the only legalnon-governmental medical marijuana garden in the country, protected by the federal courts against the DEA. Using as their stage this fascinating profile of one remarkable organization, Chapkis and Webb tackle the broader, complex history of medical marijuana in America. Through compelling interviews with patients, public officials, law enforcement officers and physicians, Chapkis and Webb ask what distinguishes a legitimate patient from an illegitimate apothead, a agooda drugs from abad, a medicinal effects from ajust getting high.a Dying to Get High combines abstract argument and the messier terrain of how people actually live, suffer and die, and offers a moving account of what is at stake in ongoing debates over the legalization of medical marijuana.
Handbook of Pain and Palliative Care:Biobehavioral Approaches for the Life Course Rhonda J. Moore, editor This book takes both a biobehavioral and a lifespan approach to understanding long-term and chronic pain, and intervening to optimize patients' functioning. Rich in clinical diversity, chapters explore emerging areas of interest (computer-based interventions, fibromyalgia, stress), ongoing concerns (cancer pain, low back pain), and special populations (pediatric, elderly, military). This coverage provides readers with a knowledge base in assessment, treatment, and management that is up to date, practice strengthening, and forward looking. Subject areas featured in the Handbook include: Patient-practitioner communication Assessment tools and strategies Common pain conditions across the lifespan Biobehavioral mechanisms of chronic pain Pharmaceutical, neurological, and rehabilitative interventions Psychosocial, complementary/alternative, narrative, and spiritual approaches Ethical issue and future directions With the rise of integrative perspective and the emphasis on overall quality of life rather than discrete symptoms, pain management is gaining importance across medical disciplines. Handbook of Pain and Palliative Care stands out as a one-stop reference for a range of professionals, including health practitioners specializing in pain management or palliative care, clinical and health psychologists, public health professionals, and clinicians and administrators in long-term care and hospice.
There is a growing conflict in medicine between the research
imperative, with its implicit goal of overcoming death itself, and
the re-emergent clinical imperative to treat death as a part of
life, and to make the process of dying as tolerable as possible.
Central to this conflict is the rise of scientific medicine and the
decline of religious and associated moral discourses. Many of the
Anglo Saxon countries are also marked by a moral and religious
pluralism which breeds controversy over bioethical issues such as
euthanasia.
This book examines the ethics of end of life care, focusing on the kinds of decisions that are commonly made in clinical practice. Specific attention is paid to the intensification of treatment for terminal symptoms, particularly pain relief, and the withdrawal and withholding of care, particularly life-saving or life-prolonging medical care. The book is structured into three sections. The first section contains essays examining end of life care from the perspective of moral theory and theology. The second sets out various conceptual terms and distinctions relevant to decision-making at the end of life. The third section contains chapters that focus on substantive ethical issues. This format not only provides for a comprehensive analysis of the ethical issues that arise in the context of end of life care but allows readers to effectively trace the philosophical, theological and conceptual underpinnings that inform their specific interests. This work will be of interest to scholars working in the area as well as clinicians, specialists and healthcare professionals who encounter these issues in the course of their practice.
Palliative medicine was first recognised as a specialist field in 1987. One hundred years earlier, London based doctor William Munk published a treatise on 'easeful death' that mapped out the principles of practical, spiritual, and medical support at the end of life. In the intervening years a major process of development took place which led to innovative services, new approaches to the study and relief of pain and other symptoms, a growing interest in 'holistic' care, and a desire to gain more recognition for care at the end of life. This book traces the history of palliative medicine, from its nineteenth-century origins, to its modern practice around the world. It takes in the changing meaning of 'euthanasia', assesses the role of religious and philanthropic organisations in the creation of homes for the dying, and explores how twentieth-century doctors created a special focus on end of life care. To Comfort Always traces the rise of clinical studies, academic programmes and international collaborations to promote palliative care. It examines the continuing need to support development with evidence, and assesses the dilemmas of unequal access to services and pain relieving drugs, as well as the periodic accusations of creeping medicalization within the field. This is the first history of its kind, and the breadth of information it encompasses makes it an essential resource for those interested in the long-term achievements of palliative medicine as well as the challenges that remain.
The first of its kind, this book describes pediatric palliative care in more than 23 countries. Each region in the world is covered and countries included are both resource poor and rich. Authors are multidisciplinary and regarded nationally and internationally in their field. Clinicians, advocates, policymakers, funders, and researchers will learn how programs were developed and implemented in each country. Authors describe children for whom pediatric palliative care is needed and provided for in their country. When applicable, a brief history of pediatric palliative care is included noting especially policy changes and legislative acts. For example, the chapter on Poland describes how pediatric palliative care grew from the Catholic church into a national movement spearheaded by several health care workers. The Pole national spirit that brought them through a change in political regime has also been a driving force in the pediatric palliative care movement. The chapter on South Africa, for example, illustrates how a resource poor country has been able to leverage philanthropic and government funding to make its dream of having an infrastructure of pediatric palliative care a reality. These are just a few examples of the inspiring stories that are included in this book. Readers from countries who wish to start a pediatric palliative care program, or advance an existing program, will learn valuable lessons from others who have faced similar barriers. Introduction and concluding chapters highlight the strengths and weaknesses of the modern pediatric palliative care movement.
Children with life-threatening and terminal illnesses- and their families- require a unique kind of care to meet a wide variety of needs. This book, now in its third edition, provides an authoritative source for the many people involved in the care of dying children. Written by leading authorities in pediatrics and palliative medicine, this comprehensive resource emphasizes practical topics and covers the entire range of issues related to the hospice care from psychological stress to pain and symptom management. The text has been fully updated and includes an international perspective chapter and a chapter written cy Children's Hospice International with detailed all-inclusive care plans.
Patients, spouses, families, and caregivers dealing with dementia
face a host of complex issues, particularly when they must confront
Dementia with Lewy Bodies or Parkinson's Disease. Until now there
has been no guidebook for the general public to help navigate these
challenging disorders.
A landmark publication in the field, this state of the art reference work includes contributions from leading thinkers across a range of disciplines on topics including ADHD, autism, depression, eating disorders and trauma. It is an essential resource for all those involved or interested in child mental health.
A practical guide for understanding how palliative care can improve quality of life for patients and their caregivers. Robin Bennett Kanarek was a registered nurse working with patients suffering from chronic medical conditions when her ten-year-old son was diagnosed with leukemia. As her son endured grueling treatments, Robin realized how often medical professionals overlook critical psychological, emotional, and spiritual support for people with life-threatening illnesses. Living Well with a Serious Illness is the culmination of decades of Robin's work to advance the field of palliative care. Although palliative care is often associated with hospice and end-of-life planning, Kanarek argues for a more expanded definition that incorporates palliative care earlier in patients' journeys. Living Well with a Serious Illness helps patients and their caregivers understand • what palliative care entails • how to access the support they need when going through a serious illness • what questions to ask medical professionals • how to navigate advanced care planning • definitions of common terminology used with end-of-life planning • the importance of spiritual care, coping strategies, and emotional support • how to become an advocate for palliative care This book illuminates the importance of seeing patients as individuals who can benefit from care for their body, mind, and spirit—the core tenet of palliative care.
A focus throughout on lifespan perspectives and a consideration of palliative care across all ages. Consideration of different cultural perspectives, beliefs, thoughts and practices outside Western societies and dominant paradigms. Integrates primary research throughout, including a focus on contemporary research from social media. Complements mainstream psychological approaches to life-limiting illness by exploring death, dying and palliative care with a critical health psychology lens.
The Collaborative for Palliative Care ("Collaborative") is a grassroots consortium of public and private organizations that came together in 2005 for the purposes of studying the increasing need for palliative care and the methods for such care. It has grown from a small fledgling group to a membership of over 50 community-based organizations and volunteers dedicated to improving care of the seriously ill through education, research and advocacy. The Collaborative bridges policy, research and practice in its initiatives and vision for the future. Partners in Palliative Care examines specific areas of concern that the Collaborative has addressed in its education programs and advocacy, as well as the collaborative processes that have been so successful in building community assets. Areas of concentration have been diverse and include advance care planning, relational communication paradigms, community capacity building, the role of culture and spirituality in palliative care, the meaning of pain and suffering for seriously ill individuals, and the ethics of health care costs in palliative and end-of-life systems of care. This book was originally published as a special issue of the Journal of Social Work in End-of-Life and Palliative Care. |
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