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This book provides a detailed account of four regimes of assisted death for which there is a substantial body of data as well as observational research: The Netherlands and Belgium have legalized both voluntary euthanasia as well as physician-assisted suicide; the state of Oregon allows physician-assisted suicide; and in Switzerland assisted suicide can be provided by non-physicians. For each regime the book describes the unique cultural, political, and legal context in which the legalization of assisted death has taken place. It analyzes problem areas that have developed, such as the issue of assisted death for patients with mental suffering or the termination of life in pediatric cases, and the effectiveness of each system of regulation is assessed. While accurate factual information cannot settle the moral debate over assisted death, it nevertheless is a precondition of any well-founded argument. The conclusion discusses the lessons that can be learned from the experience of these four regimes, and analyzes a model statute for physician-assisted suicide that has been proposed for the United States.

This book is a sequel to When treatment fails: How Medicine Cares for Dying Children (Oxford University Press, 2006). Its purpose was to systematically document persuasive issues that arise in pediatric end-of-life palliative care: when to withhold or withdraw curative treatments, how to manage pain and suffering, how to communicate bad news to patients and families, how the staff copes with patients dying and how they are able to move on, how best to train staff in pediatric end-of-life care, and how the staff understands the reactions of dying patients and their families. Similar in form (i.e., narrative analyses) and purpose, this book addresses these issues. It systematically analyzes and documents the challenges of pediatric end-of-life palliative care but does so from the special perspectives provided by narratives from children at the end of their lives and their families. It captures the frustrating and diverse voices among dying children and their parents. Together, these two books significantly advance ways to improve standards of care and promote transparency in ethically complicated deliberations concerning end-of-life care for children. Their findings will be used to develop pediatric palliative care policies and guidelines, teaching programs, advocacy resources, treatment protocols, and innovative service delivery models of national significance that improve the quality-of- life for children who are approaching the end of life and their families.

Consultants and nurses in palliative medicine who do not have a background in oncology need to know about the different types of cancer to be able to deal with palliation in these patients. The new edition of this book continues to provide comprehensive coverage of cancer management aimed at palliative care professionals. To aid understanding in the specialty, the format of the book has been thoroughly revised to include numerous tables, figures, algorithms, case histories, and key points to ensure that it will prove an invaluable, practical guide to oncology for all health care professionals involved in the care of patients with malignant disease. It provides a comprehensive overview of the management of malignant disease from the perspective of palliative medicine. The pathology, diagnosis, and management of individual tumour sites are described, with an emphasis on the symptoms produced in advanced disease and the place of oncological treatment in their management. Introductory chapters present the principles of oncological management, and later chapters address specific symptoms from the viewpoint of their pathophysiology and management. Each chapter is enhanced by typical case histories and patient journeys.

The past 30 years has seen a huge expansion in the provision of palliative care services. Because palliative medicine is a multidisciplinary specialty – combining the expertise of oncologists, anaesthetists, nurses, and many other therapeutic groups – the effectiveness of such treatment can be very difficult to measure. Additionally, research involving terminally ill patients and their carers can also present a number of practical and ethical problems. In spite of this, current health policy demands evidence of the effectiveness and value for money of health service interventions at all levels of complexity, including the service level. This book provides an introduction to the theory and practice of the evaluation of palliative care services. It examines the methodological issues involved in the evaluation of palliative care and outlines a practical approach that is readily applicable to many other health care interventions. In particular, research issues involving terminally ill patients and their carers are analysed and discussed, and approaches suggested for future work.

In this book, the author uses his wide range of clinical experience caring for severely ill patients and their families to illustrate the challenges and potential of end-of-life care. Section One utilizes the near-death experiences of two patients to explore values underlying medical humanism, and then presents the case of “Diane” to explore the fundamental clinical commitments of partnership and non-abandonment. Section Two explores, illustrates, and provides practical guidance for clinicians, patients, and families about critical communication issues including delivering bad news, discussing palliative care, and exploring the wish to die. In Section Three, difficult ethical and policy challenges inherent in hospice work, including the rule of double effect, terminal sedation, and physician-assisted suicide, are explored using a mix of real cases and an analysis of underlying clinical, ethical, and policy issues. In the final chapter, the author discusses the tragic death of his brother, which occurred as this book was being completed, and how his family made the most emotionally challenging decisions of their lives. The author exposes readers to an internally consistent and practical way of thinking by simultaneously embracing the potential of palliative care, and also acknowledging that it has limitations. His philosophy of offering forthright discussions with patient and family, mutual decision making, ensuring medical and palliative care expertise, and committing to see the dying process through to the patient's death, is vividly illustrated.

In our society, the overwhelming majority of people die in later life. They typically die slowly of chronic diseases, with multiple co-existing problems over long periods of time. They spend the majority of their final years at home, but many will die in hospitals or care homes. This book explores the possibilities for improving the care of older people dying in residential care and nursing homes. It argues that there are aspects of palliative care that, given the right circumstances, are transferable to dying people in settings that are not domestic or hospice based. The book describes what happens in nursing and residential care homes when a resident is dying, how carers cope, and the practical, health, and emotional challenges that carers face on top of their day-to-day work. Based on research from both the UK and US, the book shows how the situation can be improved.

The concept of a children's hospice, seen as innovative when the first, Helen House, opened in Oxford in 1982, is now well established, and the growth in the number of children's hospices has seen corresponding important developments in the field of paediatric palliative care. This book provides an account of how Helen House came into being. It records the events surrounding the foundation of the hospice and how it stemmed directly from what was learnt from the events following the sudden illness of the author's eldest daughter Helen, after whom the hospice was named. The book sets out the philosophy that underpinned the hospice, which was taken up as the guiding philosophy of children's hospice care. It describes the hospice's operational framework and details the service provided by Helen House. The book provides valuable insight into the needs of the families who use hospice services and touches both on the difficulties they face caring, often over a long period of time, for a child with a life-limiting illness, and on the role and attitudes of professionals and indeed of the public at large. In this new edition, an additional chapter reviews the growth of children's hospices and reflects on the challenges they face in their maturity. It considers the development of children's hospice care in relation to wider service provision and examines current and future issues surrounding the care of children with life-limiting illness.

Over 50,000 children die of medical causes each year in the U.S., and 85% of them do so in hospitals. While great strides have been made in palliative care, many of these children still suffer considerably in the last months of life. Studies have found that pediatricians, who often do not expect to confront death on a frequent basis, and other hospital staff typically feel inadequately trained to manage the situation and are emotionally unprepared for the death. All of the feelings associated with caring for a chronically ill child – guilt, anger, frustration, ambivalence, exhaustion – are magnified when a child's life can no longer be prolonged. This book is based directly on the voices of those who care for children at the end of their lives: the doctors, nurses, social workers, pastoral counselors, and psychologists. Centered on seven cases, the author has elicited and recorded the stories of these professionals about their experiences of caring for patients. The narratives illustrate how clinicians from different professional roles speak about the biological, psychological, spiritual, and social dimensions of caring for terminally ill patients. The author analyzes their ways of making sense of and giving meaning to their difficult experiences, unearthing common and distinct themes and issues across disciplines.

This book provides a unique view of patients, families, and their caregivers striving together to maintain comfort and hope in the face of incurable illness. The narratives weave together emotions, physical symptoms, spiritual concerns, and the stresses of family life, as well as the professional and personal challenges of providing hospice and palliative care. Based on a vast amount of participant observation and in-depth interviews, the book moves far beyond dry technical manuals for symptom control and tired clichés about death with dignity, to depict the sights, sounds, tastes, and smells of the daily in patients' homes and the palliative care unit. It captures the breathtaking diversity of people's aspirations and ideals as they face death, and the views of the professionals who care for them. Anger and fear, tenderness and reconciliation, jealousy and love, social support and falling through the cracks, unexpected courage and unshakable faith—all of these are part of facing death in late twentieth-century North America, and this book brings them to life in a portrait of the processes of giving and receiving palliative care.

This is a revised and expanded edition of a classic in palliative medicine, originally published in 1991, with three added chapters and a new preface summarizing our progress in the area of pain management. The obligation of physicians to relieve human suffering stretches back into antiquity. But what exactly, is suffering? One patient with cancer of the stomach, from which he knew he would shortly die, said he was not suffering. Another, someone who had been operated on for a minor problem—in little pain and not seemingly distressed—said that even coming into the hospital had been a source of pain and suffering. With such varied responses to the problem of suffering, inevitable questions arise. Is it the doctor's responsibility to treat the disease or the patient? And what is the relationship between suffering and the goals of medicine? According to the author of this book, these are crucial questions, but ones that have unfortunately remained only queries void of adequate solutions. It is time for the sick person, the author believes, to be not merely an important concern for physicians but the central focus of medicine. With this in mind, he argues for an understanding of what changes should be made in order to successfully treat the sick while alleviating suffering, and how to actually go about making these changes with the methods and training techniques firmly rooted in the doctor's relationship with the patient.

Drawing from his extensive clinical experience and many years of teaching, the author of this book has written a guide to palliative care for clinicians. The topics addressed range from an overview of death and dying to specific approaches to symptom management. As an introduction to both the art and science of palliative care, the book reflects the perspectives of one physician who has dedicated his career to this rapidly evolving field. It links real stories of illness with practical advice, thereby delineating clinical practice in a way that reflects the daily concerns of clinicians.

This book provides practical guidelines on the responsibilities of those who lead, co-ordinate, and manage volunteers in small hospices, large specialist palliative care units, and in general hospitals with palliative care teams. Volunteers are key workers, who often perform difficult and important work. In the United Kingdom alone there are thousands of volunteers in hospice work, a small proportion doing work with patients, and the vast majority doing equally valuable work such as driving, sitting with relatives, and manning charity shops and telephones. As a result, Europe, Australia, the United States and Canada are very interested in the United Kingdom's use of volunteers. Aimed primarily at Voluntary Services Managers in small hospices, large specialist palliative care units, and in general hospitals with palliative care teams, this updated second edition covers volunteer selection, training, supervision and support, and legal and ethical considerations.

Day care for people with advanced diseases is one of the most rapidly expanding components of palliative care in the UK, and is increasingly a focus of new-service development throughout the world. Many benefits, in terms of quality of life, holistic care for the patient and family and increased time at home are claimed by day care. This book provides a comprehensive overview of the current philosophy, patterns, and policies of palliative day care. It places emphasis on the need to evaluate performance in palliative day care and describes in detail aspects such as audit, health economics, and research, and their associated problems and pitfalls. For readers new to the field it aims to survey the broad concepts and components of palliative day care and the philosophies and practical issues that relate to them. For those more experienced in the field, it seeks to highlight some of the questions, challenges, and dilemmas that palliative day care services face and which will need to be addressed in the years ahead.

Maintaining dignity for patients approaching death is a core principle of palliative care. Turning that principle into ways of guiding care at the end-of-life, however, can be a complicated and daunting task. Dr. Harvey Max Chochinov, an international leader in palliative care, has conducted groundbreaking research on the issue of dignity and palliative care. His findings are beginning to change the way people think about and approach care for the terminally ill. Dignity Therapy is a novel, individualized, brief psychological intervention, designed specifically to address many of the psychological, existential and spiritual challenges that patients and their families face as they grapple with the reality of life drawing to a close. This therapeutic approach, based on years of Chochinov and his team's research, has been tested on patients with advanced illnesses in various countries worldwide. Many palliative care programs are starting to incorporate Dignity Therapy into the range of services offered dying patients and their families. This enthusiastic uptake of Dignity Therapy speaks to some universal aspects of being human; to be alive means to experience being vulnerable and being mortal. Dignity Therapy offers a way of preserving meaning, purpose and hope for patients approaching death. The benefits of this approach for patients and families have been demonstrated in various studies in diverse settings. Dignity Therapy: Final Words for Final Days introduces readers to this pioneering and innovative work, illustrating how Dignity Therapy can change end-of-life experience for those about to die and those who will grieve their passing.

There is increasing recognition of the burden of venous thromboembolism (VTE) in patients with advanced incurable disease and the clinical, ethical, and philosophical challenges they may pose. With a growing elderly population and oncological therapies helping patients live longer with malignant disease, VTE is likely to be an ongoing problem. Whilst presentation, diagnosis, and treatment of VTE in general medicine are well established, its management within the palliative care setting is less clear-cut. Clinical presentation is often masked by other palliative symptoms, and symptoms can be consistent with those of other conditions; diagnosis is therefore underappreciated, and the condition can be difficult to manage. Bringing together international contributions from the field of VTE and palliative care, this book explores the increasing challenges faced by healthcare professionals when managing VTE in advanced disease. Topics such as the epidemiology and pathogenesis of the condition are discussed. It appraises the current evidence informing the prevention, diagnosis, and treatment of VTE, with particular emphasis on its application to patients with incurable malignancy and non-malignant disease. Chapters are illustrated with key learning points and, where appropriate, case studies are presented to illustrate the decision-making processes that may occur when balancing the evidence with its impact on patient quality of life.

Most people with far-advanced illness wish to be cared for at home for as long as possible. The challenge of providing good palliative care at home is therefore of major importance for family doctors, nurses, and all those committed to maintaining the highest possible quality of life for the dying person. As modern specialist palliative care has raised both standards of care and also public expectations of family doctors and community nurses, this book helps to place specialist care in context. As palliative care is a major responsibility for teams providing care at home, the book provides a definitive guide on how to provide effective care for people with far-advanced disease. It has been written by two palliative specialists, both of whom have been family doctors. The book deals with all the physical, emotional, spiritual, and social problems that will be encountered by family doctors and community nurses caring for patients and relatives in a home setting. It deals in detail with emergencies, communications, and ethical issues, and emphasises throughout the importance of team work.

Patient participation and user involvement are central to current thinking about the effective delivery of desired healthcare outcomes. Working with the person who lies behind every patient is core to palliative care. A voice can only become significant when it is listened to and acted upon. With palliative care increasingly addressing the needs of people with a variety of conditions in a range of settings, as well as with advances in research, technology, and information, the challenge to be ‘a voice for the voiceless’ is greater than ever. This book addresses key aspects in the provision of patient-centered palliative care and tracks significant developments in user involvement. It sets the philosophy within the cultural, social, and political context of modern healthcare, particularly addressing issues of quality, standards, education, and bereavement. A key component in the delivery of high-quality palliative care is the multi-professional team. Following a discussion of teamwork, five core professions present a critical analysis of their working practices. The book concludes with a commentary from a palliative care user and a bereaved carer. It is often somewhat glibly asserted that the patient is, or should be, at the centre of care. There have been few attempts to examine how to keep him or her there without professional needs and protocols crowding him or her out. This book asks how we listen and why we listen, and focuses on the challenges of how professionals can keep the needs of the patient central in clinical care.

Hospital palliative care teams have been established in rapidly increasing numbers over the last twenty, as it has been recognised that hospices can never transfer the philosophy and practice of palliative care into the acute sector by simply existing; they often work as ‘stand alone units’ and remain outside mainstream medicine. However it has become apparent that improving access to palliative care for patients in acute hospitals is not as easy as employing external palliative care specialists as consultants. Even setting up a team of professionals who work solely in a hospital will often not improve the care of the great majority of patients being treated there. Based on the experience and knowledge of three clinicians in the area who have developed palliative care services in acute settings, this book provides those facing the same challenges with guidance and advice on a range of problems they might encounter. Using a problem focused and practical approach, this guide is filled with case-based problems to help with the identification of realistic, usable, everyday solutions. It also covers the skills and knowledge needed to help teams make progress in the hospital as well as outlining the best training to help professionals continue to flourish.

Dyspnoea (breathlessness) is an uncomfortable awareness of breathing that occurs in approximately 30–75% of terminal cancer patients. It is one of the most distressing symptoms for both patients and family members and can seriously impact on quality of life. Typically, dyspnoea is associated with congestive heart failure, end-stage chronic obstructive pulmonary disease, or lung cancer. This book provides palliative care doctors and specialist nurses with practical guidelines to help manage and treat patients with breathlessness. It includes the science behind the symptom in an attempt to explain the pathology and physiology of this complex condition. The book has been organized to address generalized aspects of breathlessness in advanced illness and more specific aetiologies and managements relevant to particular underlying diseases. It summarizes the epidemiology and the pathophysiology of breathlessness, measurement, research approaches, rehabilitation and exercise, clinical approaches that can be taken at the bedside, pharmacological and non-pharmacological approaches, and surgical interventions. The care of patients with dyspnoea requires input from a variety of disciplines such as palliative care, physiotherapy, respiratory medicine, and nursing, and this is reflected in the multidisciplinary list of contributors.

This book addresses key questions about the need for palliative care, the current provision of services, and the evidence for the effectiveness of a range of alternative models of organisation in palliative care. A broad approach is taken to include the needs of both cancer patients and patients with other terminal diseases, and the relationship between palliative care and other aspects of health care services. The book is based on a comprehensive and detailed review of the international scientific literature on evaluation of palliative care, providing an essential evidence base for policy decisions.