End-of-life decision making is often viewed from an academic perspective, which can obscure the debate's central human concerns. This guide introduces general readers to people with personal stakes in the right-to-die conundrum. Putnam provides practical assistance to readers and their loved ones, simultaneously incorporating the abstract and theoretical analysis essential to examining how we die in contemporary Western society. She also presents the backgrounds of the Hospice and Right-to-Die (Hemlock) Movements.

To elucidate the human side of the debate, Putnam profiles and interviews six important figures:

Dame Cicely Saunders, founder of the modern Hospice Movement

Derek Humphry, founder of The Hemlock Society in the U.S.

Herbert Cohen, an early leader in euthanasia circles in The Netherlands

Timothy Quill, whose assistance in a patient suicide resulted in a case before the U.S. Supreme Court

Joanne Lynn, founder of Americans for Better Care for the Dying

Jack Kevorkian (profiled, but unavailable for interview)

Another unique feature of this book is the application of philosopher Judith Jarvis Thomson's general theory of rights to the very specific right to die. Pointing to potential compatibilities between the two positions, she concludes that heroic compassion does not require a final choice between Hospice and Hemlock--there may be room enough for both.

None of the literature in the field of terminal care provides a full treatment of the laws, documents, and policies relating to the difficult issues arising at the end of life. When Life Ends was written to fill this gap by an attorney who serves on the bioethics committee of a large public hospital. It is an invaluable resource and practical tool for physicians, nurses, medical staffs, legal professionals, hospital administrators, and hospital bioethics committees because it provides: 1) in-depth legal commentaries on the refusal of life-sustaining treatment, advance directives, surrogate decision making, and the Patient Self-Determination Act; 2) more than 70 medical and legal documents to be used in connection with end of life decisions; and 3) hospital policies and procedures to suggest guidelines to hospital bioethics committees as they carry out their functions of developing policies and procedures to address end of life legal and ethical issues.

"I just wish I had armfuls of time." These are the words of a four year old facing a life-threatening illness. This text portrays the psychological experience of such children, who are irreversibly changed from the moment of diagnosis. Barbara Sourkes is a psychologist who specializes in psychotherapy with children who have cancer and other serious diseases. In the account, she describes how she works with these children, using drawings, soft toys and dolls, stories and real medical instruments to allow them to communicate their experience of the illness, the treatment they undergo, their relationship with their families, and their feelings of grief and loss in coming to terms with the prospect of death. Making use of the words of children, offering interpretations and practical advice, this is a book that should be useful reading for those concerned with the care of terminally ill children.

Hospice Care and Cultural Diversity captures the richness and differences that make up the United States and its culture. This book shows you the complex issues arising from work with patients of a different culture and encourages research in hospices which support culturally innovative programs. Many people are individually knowledgeable and culturally sensitive, but few hospices have systematically planned for service to culturally diverse groups. This volume identifies who is implementing organizational programs of cultural sensitivity and acknowledges the efforts of those individuals working to make hospice accessible to everyone.Hospice Care and Cultural Diversity contains original research, personal insights, and overviews to help you understand what is being done in the field. Specifically, chapters discuss: National Hospice Organization activities, goals, and recommended actions death and dying from a Native American perspective breaking barriers to hospice for African Americans a case study of the development of a culturally sensitive treatment plan in pre-hospice south Texas caregiving norms surrounding dying and use of hospice services among Hispanic American elderly cultural considerations surrounding childhood bereavement among Cambodians in the U.S. one hospice's experience in identifying and meeting the needs of ethnic minority patientsPeople from many different cultures are eager to share their customs, practices, and beliefs. They want hospice providers to understand their culture, and they want their community served by hospice. The only book of its kind, Hospice Care and Cultural Diversity is a valuable reference and source of ideas for anyone interested in the delivery of hospice services. From students to experts, you will find much information to help make hospice care accessible and comfortable for all groups of people.

This thoughtful new book presents strategies for helping end-stage renal disease patients and their families deal with the psychosocial aspects of the chronic long-term illness. Technological advances in the treatment of this disease have offered much hope for improved quality in living which has led caregivers to have a greater concern for preserving the quality of life of their patients. In Psychosocial Aspects of End-Stage Renal Disease leaders in the field of many disciplines share knowledge and reveal problems that are still evident to them in the confrontation with this potentially fatal illness.Five comprehensive sections devote special attention to the different areas of concern for the psychosocial well-being of end-stage renal disease patients. The impact of renal disease on family relationships is covered by examining issues of family responses and coping measures such as marital and family reactions to home and hospital dialysis treatment. Ethical issues in treatment are explored, including the ethics of treatment refusal and a Jewish perspective on kidney transplants. Relations between staff and patients and a timely section on renal disease and special populations, particularly the elderly and AIDS patients, make up the final two sections of this informative volume. Professionals in all allied health disciplines will benefit from this important volume as it demonstrates a model approach, if not the definitive one, for the treatment of the psychosocial aspects of end-stage renal disease as well as other chronic illnesses.

Christopher Kerr is a hospice doctor. All of his patients die. Yet he has tended thousands of patients who, in the face of death, speak of love, meaning and grace. They reveal that there is hope beyond cure as they transition to focus on personal meaning. In this extraordinary and beautiful book, Dr. Kerr shares his patients' stories and his own research pointing to death as not purely the end of life, but as a final passage of humanity and transcendence. Drawing on interviews with over 1,200 patients and more than a decade of quantified data , Dr. Kerr reveals why pre-death dreams and visions are remarkable events that bring comfort and exemplify human resilience. These are not regular dreams. Described as "more real than real," they frequently include loved ones long gone and mark the transition from distress to acceptance. These end-of-life experiences help patients restore meaning, make sense of the dying process and assist in reclaiming it as an experience in which they have a say. They also benefit the bereaved who get relief from seeing their loved ones pass with a sense of calm closure. Beautifully written with astonishing stories, this book, at its heart, celebrates the power to reclaim how we die, while soothing the bereaved who witness their loved ones go with unqualified grace.

Teamwork is a complex but essential component of palliative care. The needs of people diagnosed with life threatening disease will vary greatly over time, and it is rarely possible for just one professional to be able to provide adequate care. In order to ensure an holistic approach, the whole multi-disciplinary team must be involved. Inevitable questions arise from such an approach, and this book seeks to address these. How does a team come into being? What different formats are there? How might the patient contribute to the effectiveness of their care and the way in which the team operates? What are the difficulties and frustrations encountered in developing and maintaining such teams? What models of working and styles of leadership have developed? How are power and authority handled within the team setting? The importance of team building, training, support, attention to group process, and stress management to protect the mental health of the team are explored. The ethical issues inherent in palliative care such as consent, autonomy, confidentiality, decision making within teams, and the legal implications of such are also discussed. The book concludes with one important question - do we know if teams are the most effective way of providing care? This book addresses key issues surrounding the role of the team in palliative care, and is an essential guide to reappraising the importance of collaborative teamwork, and enhancing understanding of existing team structures.

Cicely Saunders is universally acclaimed as a pioneer of modern hospice care. Trained initially in nursing and social work, she qualified in medicine in 1958 and subsequently dedicated the whole of her professional life to improving the care of the dying and bereaved people. Founding St. Christopher's Hospice in London in 1967, she encouraged a radical new approach to end of life care combining attention to physical, social, emotional and spiritual problems, brilliantly captured in her concept of "total pain." Her ideas about clinical care, education and research have been hugely influential, leading to numerous prizes and awards in recognition of her humanitarian achievements. This book includes a selection of Cicely Saunders' most important writings throughout a period of over forty years.
Full articles, chapters, editiorials, reviews, and commentaries include important clinical themes relating to the care of dying people such as pain and symptom management, issues of communication and truth telling, and the needs of particular patient groups, such as those with cancer and other diseases. The book includes pieces that reflect on the wider development of the palliative care field and on policy and organizational issues. Some of the papers take up the theme of spiritual care at the end of life, as well as the question of euthanasia, raising in turn issues of a wider theological and philosophical nature.
The articles are written for a multi-disciplinary audience and will be of enormous interest to many professionals now working in palliative care. The collection will become a key work of reference for those interested in the evolution of hospice and palliative care and will serveas an important sourcebook of many currently hard to obtain publications by the acknowledged founder of the modern hospice movement. This book will also stand as a remarkable testimony to the personal contribution of Cicely Saunders and the influence she has had upon the modern field of palliative and end of life care.

Palliative care supports patients suffering from life-limiting illnesses by providing relief from physical, emotional and spiritual suffering, improving the quality of life for them and their families. It is an important component of good patient care, an integral part of the continuum of support for patients suffering with advanced cancer and end stage organ diseases. Providing good palliative care requires both sound clinical knowledge and compassion.With new chapters on end stage organ diseases, spiritual care and medical ethics, all healthcare professionals will find wisdom and practical advice in this book by the patient's bedside. The editors and contributors of the 2nd Edition of The Bedside Palliative Medicine Handbook have taken great care to provide readers with an evidence-based, updated guide to the practice of palliative medicine.

This "comforting...thoughtful" (The Washington Post) guide to maintaining a high quality of life-from resilient old age to the first inklings of a serious illness to the final breath-by the New York Times bestselling author of Knocking on Heaven's Door is a "roadmap to the end that combines medical, practical, and spiritual guidance" (The Boston Globe). "A common sense path to define what a 'good' death looks like" (USA TODAY), The Art of Dying Well is about living as well as possible for as long as possible and adapting successfully to change. Packed with extraordinarily helpful insights and inspiring true stories, award-winning journalist Katy Butler shows how to thrive in later life (even when coping with a chronic medical condition), how to get the best from our health system, and how to make your own "good death" more likely. Butler explains how to successfully age in place, why to pick a younger doctor and how to have an honest conversation with them, when not to call 911, and how to make your death a sacred rite of passage rather than a medical event. This handbook of preparations-practical, communal, physical, and spiritual-will help you make the most of your remaining time, be it decades, years, or months. Based on Butler's experience caring for aging parents, and hundreds of interviews with people who have successfully navigated our fragmented health system and helped their loved ones have good deaths, The Art of Dying Well also draws on the expertise of national leaders in family medicine, palliative care, geriatrics, oncology, and hospice. This "empowering guide clearly outlines the steps necessary to prepare for a beautiful death without fear" (Shelf Awareness).

There are few enough studies of the needs of dying people in the Western world, but no accessible studies of the needs of dying people in Asian cultures. Now, in this pioneering work, Dr Mui Hing June Mak shows us how a Good Death expresses itself in Hong Kong, and also how this ideal varies and is modified in other Asian societies as this is observed in their own, often inaccessible literature. The author offers a comprehensive review of the literature on dying conduct and needs from several Asian perspectives, and also provides a perceptive analysis of the lessons to be learnt from her qualitative study which employed a 'Grounded Theory' methodology to understand the experiences and end-of-life needs of cancer patients in hospice care in Hong Kong. A relation-based theory, Harmonious Death, is developed. She also makes several suggestions to translate these theoretical concepts into practice. Dr Mak brings to her words not only the disciplined eye of a hospice clinician and academic but also a compassionate insight derived from her direct personal experiences. Close, personal relationship with three dying people were formative of her current research and professional interests, and also the driving concern in ensuring that the voices of all the participants in her study are heard clearly, sympathetically, and poignantly. Audience: The book will be of interest to teachers, students and professionals across the whole range of health and social care and social work, particularly those in palliative or hospice settings, as well as well as those with an interest in behavioural and social sciences, anthropology, philosophy, thanatology, not to mention the humanities. Contents: Foreword by Professor Allan Kellehear . literature review . Western and Chinese perspectives on death and dying . the research study . elements of a Good Death in Chinese culture: awareness of death; maintaining hope; freedom from pain and suffering; maintaining social relations; experiencing personal control; preparation and bidding farewell; accepting the timing of one's death A Harmonious Death, The Good Death models . Conclusions and recommendations for hospice philosophy, education, research and health policy

Medical futility is a controversial issue not only in its definition but also in its application. There are few books on the subject, and those in existence mostly focus on the situation in the United States. This title, however, provides extensive international perspectives on medical futility.This book will benefit healthcare professionals as well as health policy makers around the world. It allows them to see how different countries approach the issue of medical futility and their experiences in dealing with this issue. The complexity of the issue, and in particular how some countries innovatively address it in an ethically sound manner, is clearly presented.

Help families of institutionalized elders with this compassionate and practical manual.

Spirituality and Coping with Loss: End of Life Healthcare Practice describes a research study that reflects nurses' experience of the nature of loss encountered in end of life care settings as well as the ways in which spirituality is a resource in coping in these situations. Key findings indicate how nurses' spiritual development impacts their proficiency in spiritual care. These findings will be of interest to nurses and nurse educators as well as other healthcare professionals.

Intensive care units (ICUs) provide comprehensive, advanced care to patients with serious or life-threatening conditions and consequently, a significant amount of end-of-life care (EOLC). Indeed, approximately 20% of deaths in the U.S. are associated with an ICU stay, and nearly half of U.S. patients who die in hospitals experience an ICU stay during the last 3 days of life. Despite the commonality of the ICU experience, ICU patients typically suffer from a range of distressing symptoms such as pain, fatigue, anxiety, and dyspnea, causing families significant distress on their behalf. Thus, there is a growing imperative for better provision of palliative care (PC) in the ICU, which may prevent and relieve suffering for patients with life threatening illnesses. Effective palliative care is accomplished through aggressive symptom management, communication about the patient and family's physical, psychosocial and spiritual concerns, and aligning treatments with each patient's goals, values, and preferences. PC is also patient-centered and uses a multidisciplinary, team-based approach that can be provided in conjunction with other life-sustaining treatments, or as a primary treatment approach. Failure to align treatment goals with individual and family preferences can create distress for patients, families, and providers. If implemented appropriately, palliative care may significantly reduce the health care costs associated with intensive hospital care, and help patients avoid the common, non-person centered treatment that is wasteful, distressing, and potentially harmful. Due to the success of many PC programs, administrators, providers, and accrediting bodies are beginning to understand that palliative care in the ICU is vital to optimal patient outcomes.

The concept of a "good death" has been hotly debated in medical circles for decades. This volume delves into the possibility and desirability of a "good death" by presenting the psychosocial measures of care as a crucial component, such as religion, existentialism, hope and meaning-making. The volume also focuses on oncologic psychiatry and the influence of technology as a means to alleviate pain and suffering, and potentially provide relief to those at the end of life. Such initiatives are aimed at diminishing pain and are socially bolstering and emotionally comforting to ensure a peaceful closure with life as opposed to a battle waged. Utilizing the most recent information from medical journals and books to present the latest on healthcare and dying today, this volume crosses the boundaries of thanatology, psychology, religion, spirituality, medical ethics and public health.

This educational workbook helps people who build compassionate relationships with dying people. Accompanied by its trainer's guide, it presents a comprehensive, sequential learning program for caregivers in non-medical capacities covering everything from self-understanding to spiritual issues, listening skills and expressive activities, developing the skills, awareness and resilience needed for this privileged and sensitive role. The program includes a variety of learning experiences, including large and small group activities, discussion, close reading, creative writing, self exploration, and skill development and practice. This is an invaluable resource for small groups of individuals who wish to volunteer in hospice or palliative care settings. A copy of the guide for trainers is included in each pack of workbooks, and is also freely available online. 'The best resource I have seen to guide teachers and learners in this complex training process. I predict that those of you who try it with your staffs and trainees will find that it bears fruit both for your patients and their families, but also for the sustenance and personal development of the staff members themselves.' Timothy Quill, M.D., in his Foreword

This enlightening volume provides first-hand perspectives and ethnographic research on communication at the end of life, a topic that has gone largely understudied in communication literature. Author Elissa Foster' s own experiences as a volunteer hospice caregiver form the basis of the book. "Communicating at the End of Life" recounts the stories of Foster and six other volunteers and their communicative experiences with dying patients, using communication theory and research findings to identify insights on the relationships they form throughout the process. What unfolds is a scholarly examination of a subject that is significant to every individual at some point in the life process.
Organized chronologically to follow the course of Foster' s involvement with hospice and the phases of the study, the book opens with Part 1, providing background and contextual information to help readers understand subsequent stories about communication between volunteers and patients. Part 2 of the volume emphasizes the adjustments required by the volunteers as they entered the world of hospice and the worlds of the patients. Part 3 underscores the importance of improvisation and finding balance within the role of volunteer-- in particular how to be fully present for patients as well as their family members. The volume concludes with Part 4, which addresses how volunteers coped with the death of their patients and what they learned from the experience of volunteering.
"Communicating at the End of Life "is appropriate for scholars and advanced students studying personal relationships, health communication, gerontology, interpersonal communication, lifespancommunication, and communication & aging. Its unique content offers precious and meaningful insights on the communication processes at a critical point in the life process.

Deckhead: An important examination of the theological, spiritual and ethical issues surrounding death.

What do faithful living and faithful dying mean as we near life's end? With all the technology and choices available to us today, making decisions about the end of life grows ever more difficult. As a result of all the theological and ethical issues that have arisen around the dying process in recent years, the 72nd General Convention of the Episcopal Church created a task force to study and report on these concerns. This is the report of the End-of-Life Task Force. In it, the Task Force responds to the broad range of theological, ethical, pastoral and policy issues that are generated by the need to provide loving and fitting care at the end of life.

Intended as a teaching document, Faithful Living, Faithful Dying will be useful as a discussion tool for the church, for individuals facing difficult decisions, for professionals, such as clergy and health care providers, and for those who make public policy.

This book provides a clear approach to establishing a user involvement system in a healthcare organisation and its potential impact on cancer services. Using a tool kit style approach drawing on examples of successful past projects and case studies to provide evidence of good practice it describes how to plan and implement different stages of user involvement enabling organisations to draw on user experience and expertise to evaluate develop and improve the quality of service that they provide. Members of regional cancer networks multidisciplinary cancer care teams and all those involved in the NHS cancer services will find this toolkit interesting reading.

Taking as its focus a highly emotive area of study, The Dying Process draws on the experiences of daycare and hospice patients to provide a forceful new analysis of the period of decline prior to death.
Placing the bodily realities of dying very firmly centre stage and questioning the ideology central to the modern hospice movement of enabling patients to 'live until they die', Julia Lawton shows how our concept of a 'good death' is open to interpretation. Her study examines the non-negotiable effects of a patient's bodily deterioration on their sense of self and, in so doing, offers a powerful new perspective in embodiment and emotion in death and dying.
A detailed and subtle ethnographic study, The Dying Process engages with a range of deeply complex and ethically contentious issues surrounding the care of dying patients in hospices and elsewhere.

eBook available with sample pages: 0203130278