Palliative Care

Eight hundred million people live in Africa, a continent which covers 22 percent of the world's surface and encompasses some fifty countries. Conflict, poverty, endemic diseases, and lack of clean water pose serious challenges for the population, made worse by a rampaging AIDS pandemic. Huge loss of life has impacted dramatically on both health systems and social and family structures. As the attention of the world focused increasingly on Africa, the International Observatory on End of Life Care was commissioned to conduct a timely review of hospice and palliative care development across the continent. The Observatory undertook this review using an approach specially designed for resource-poor settings. Information was collected against an agreed template to allow comparisons between countries and regions. As a result, an insight is given into the challenges, opportunities and successes faced by hospice and palliative care workers, country by country, throughout the twenty-six countries in Africa where a palliative care initiative is underway. Strategies and models of care are explored, and the development of palliative care is viewed from various standpoints including ethnographic, historical, ethnic, demographic and epidemiological perspectives. This is the first book to focus exclusively on palliative care and hospice development in Africa.

When the first edition of this book was written in 1990, there were only a few advisory palliative care teams working in hospitals. Since then, the number of teams has grown rapidly. The concept of these teams is now widely accepted but there is an increased need for information about setting up a team, how they work, and how effective they are. This book looks at the need for hospital-based palliative care teams and the challenges of bringing palliative care into the acute hospital setting. It reviews the needs of patients, their families, and their professional carers, and also looks at the theoretical and practical problems that may be encountered. The book contains practical advice on setting up hospital-based palliative care teams, the selection of team members, team dynamics, and the role of the pain clinic and palliation oncology.

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.

Palliative care is rapidly evolving as a multidimensional therapeutic model devoted to improving the quality of life of all patients with life-threatening illness. Symptom control, management of psychosocial and spiritual concerns, decision making consistent with values and goals, and care of the imminently dying that is appropriate and sensitive to the unique needs of the individual and the family — these are among the critical issues addressed through palliative care. As this discipline has evolved, the need for research in all these areas has become widely acknowledged. This book describes both the progress that has already been made in the investigation of these issues and the methodologic elements that must be addressed in future studies. The perspective is broad and the overriding goal is to inform about the state of the art in these rapidly evolving areas of research.

Improvements in health care in the 21st century mean people are living longer, but with the paradox that chronic illness is increasingly prevalent. Dementia, a term used to describe various different brain disorders that involve a loss of brain function which is usually progressive and eventually severe, is a condition associated with an ageing population and is becoming increasingly common. Worldwide, there are approximately 24 million people with dementia, expected to rise to 81 million by 2040. Inevitably, people living with dementia will die, but their needs at the end of life are not well known. This book describes what might be achieved if the values and best practice of both dementia care and palliative care are brought together, to achieve quality end-of-life care for this specific group of patients. It explores what is known about the experience of dying with dementia, using a narrative approach, and develops a model that draws together a ‘person-centred’ approach to care. The book examines the possibilities and the challenges faced when trying to improve quality of life for people with dementia, and presents examples of good practice from across the world.

The new edition of this book has been updated to incorporate recent advances in both the approach to, and treatment of, the terminally ill. Based on many years of monitoring clinical practice and research at St Christopher's Hospice, the author presents practical, balanced advice on the general ethical and medical principles of caring for dying patients. This will continue to be an invaluable handbook for all hospice physicians and nurses as a compassionate source of factual information.

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 discourses. Many Anglo Saxon countries are marked by a moral and religious pluralism that breeds controversy over bioethical issues such as euthanasia. Some scholars argue that modern medicine has put the cure of bodies before the care of persons. Some scholars attribute this to a metaphysical heritage of dualism and reductionism. This heritage has become problematic in the modern age, where waning belief in a divine order leaves the individual self as the bearer of meaning. At the same time, knowledge about nature and society has been increasing at such an accelerated pace that it has become difficult to develop a unified secular worldview. Chapters One and Two address these larger issues. Chapter Three focuses on medicine's approach to cancer as an example of the strengths and weaknesses of the research imperative. Chapter Four looks at the diffusion of the theory and practice of palliative care throughout the Anglo Saxon world. The fifth chapter discusses the development of effective pain control. The sixth chapter addresses the changing meaning of euthanasia in Western history in the past century as it has transitioned from a philosophical position to a widely debated policy proposal.

The use of narrative methods has a long history in palliative care, pioneered by Dame Cicely Saunders, founder of the modern hospice movement. This book provides a multidisciplinary examination of work with narrative and stories in contemporary health and social care, with a focus on the care of people who are ill and dying. It animates the academic literature with ‘real-world’ examples from international contributors, including palliative care service users and those working in the social and human sciences, medicine, theology, and the creative arts. The book addresses and clarifies core issues: What is a narrative? What is a story? What are some of the main methods and models that can be used and for what purposes? What practical and ethical dilemmas can the methods entail in work with illness, death, and dying? As well as highlighting the power of stories to create new possibilities, the book also acknowledges the conceptual, methodological, and ethnical problems and challenges inherent in narrative work. As the hospice and palliative care movement evolves to meet the challenges of 21st century health care, this book highlights how narratives and stories can be attended to in ways that are productive, ethical, and caring.

The healing tradition in Western medicine goes back to its Greek origins. What actually constitutes healing is poorly understood even in this first era of cure and advanced medical science. Sickness has usually been defined as the physical result of bodily disease. This is out of date in these times of chronic illness and when the problems of disability and aging are so common. This book uses a different definition: Persons are sick who cannot achieve their goals and purposes because of impairments of function from the molecular to the spiritual that they believe are in the province of medicine. Some impairment may be due to disease, but certainly not all. As the sick person has become the focus of medicine there have been repeated failed attempts to achieve both technologic and humanistic goals. This is wrong; there are not two goals there is only one ultimate goal, the well-being of the patient. All therapeutic interventions toward that end are exercises in healing. There are some impairments of function requiring high technology and others in which the personal actions of healers are most appropriate; proper balance is necessary. This book describes in depth what sickness is, what persons are, and how to understand function and its impairments. Healing skills and actions are explained and the nature of healing for sick and also suffering patients is detailed. The book concludes with a discussion of the moral basis of the patient-healer relationship and finally an understanding of goals.

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.