Palliative Care

Support for the family is a key component of palliative care practice and philosophy, with both patient and family construed as the ‘unit of care’. However, there is not always formal acknowledgement of the importance of the family carer role, or that of friends, neighbours, and other non-professional, informal carers. Consequently, health and social care professionals find carer support work particularly challenging. Symptom management, personal care, and administering medications are just some of the tasks taken on by this group of non-professionals, and the impact of this role can have negative emotional, physical, financial and social implications on the care-giver. Furthermore, family carers consistently report unmet needs, and there has been a lack of intervention studies aimed at improving carer support. This book provides an evidence-based, practical guide to enable health and social care professionals to assess and respond to family carer needs. It also explores the wider sociological, policy, and research issues related to family carers and palliative care.

This book provides clinicians with practical and evidence-based guidelines to achieve effective, patient-centred communication in the areas of cancer and palliative care. It breaks communication down into key modules that cover the life-cycle of cancer care and includes coverage of diagnosis and treatment including clinical trials, empathic support in response to distress, transition to survivorship or palliative therapies, discussion of prognosis, conduct of family meetings, and care of the dying. Complementary training of cancer patients in their communication with the doctor completes the interactive dyad. The art of teaching, impact of gender and power in the consultation and the ethical context are carefully considered. Special communication challenges include discussion of genetic risk, rehabilitative and salvage surgery, promotion of treatment adherence, unanticipated adverse outcomes, intercultural issues, and fertility and sexuality. The value of decision aides, question prompt lists, audio-recording of consultations and use of the internet is illustrated. Theoretical models are examined from the medical school to the highly specialized practice, facilitation training and actor training are made explicit, and international approaches to communication skills training are compared and contrasted. Finally, research tools that assist in coding cancer consultations, evaluating training courses, and employing mixed methods in studies aid the reader in providing clear and sensitive communication when handling challenging situations whilst treating cancer sufferers and palliative care patients.

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.

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, it emphasizes practical topics and covers the entire range of issues related to 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 by Children's Hospice International with detailed all-inclusive care plans.

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.