Health care professionals seeking to improve the quality of life for those living with serious illness and nearing the end of life will find exactly what their organization needs in the second edition of this acclaimed book by Dr. Joanne Lynn and her colleagues. Improving Care for the End of Life provides expert guidance on how to make significant improvements now, at all levels of the health care system from the bedside and the hospital to the health care policy and legislative arenas by using the rapid-cycle breakthrough approach to change. The ideas are proven, and the stories of teams that have put them to use will inspire and enlighten. New to the second edition: BL New chapters to address issues of growing interest such as continuity of care, and the special needs of dementia patients and their loved ones BL Details on trajectories of care and how these affect decisions at the end of life BL Updated and expanded information on pain management, advance care planning, ventilator withdrawal, depression and delirium, advanced heart and lung disease, and more BL Scores of new insights, measurement approaches, and tips based on the experiences of hundreds of improvement teams nationwide BL Thoroughly updated references The sourcebook speaks to all managers of health care systems serving people with serious illnesses, including doctors in offices, nurse managers on hospital units, social workers in long-term care facilities, administrators of home care and hospice agencies, hospital chaplains, directors of volunteer services, and others.

The first book of its kind, Resilience and Palliative Care - Achievement in adversity takes the increasing international literature on resilience and applies it to palliative and end-of-life care. The book offers an overview of all key aspects of palliative care, presented through a resilience perspective. Why do some patients and families break down while others surmounts the challenges facing them? What interventions strengthen individual, family and community coping? This book aims to facilitate change with people facing the crisis of death, dying and bereavement. Much of the existing literature has focused on risk, problems and vulnerability; the emerging concept of resilience focuses on strengths and possibilities. The 'total pain'/'total care' approach pioneered by Dame Cicely Saunders and St Christopher's Hospice now needs reinterpreting in the light of changing contexts and challenges. The realities of demographic change and resource-constrained health and social care environments have generated an increasingly risk focused approach to service delivery. A narrowly medicalised approach has inevitable limitations; professional care alone will be unable to meet need and demand in the face of ageing populations, changing patterns of illness and the need for equity. The resilience approach offers a counterbalance that harnesses the strengths of individuals and the communities in which they live and in which most of their dying will take place. Resilience thinking emphasises the importance of public health and creates a partnership between patients, professionals and community structures, seeking to build community capacity and to deliver a preventive health care that will leave future generations less afraid of the dying and bereavement that will confront all of us. This book offers insights into how, at all levels of planning and delivering palliative care, there is the opportunity to maximise coping, build an infrastructure for self-help, and increase the capacity of strengthened teams and organisations.

Despite the fact that most palliative care educators are involved in teaching, there is little literature devoted to education specifically within palliative care. This book bridges that gap, giving a wide-ranging, global view of palliative care education. It offers theoretical and practical insights, along with specific suggestions for developing knowledge and skills for teaching. It also contains extensive accounts of important contextual matters which influence the range and quality of palliative care education, including: interprofessional learning; continuing professional development; evaluation; and educational leadership. The development of palliative care as a clinical speciality is increasingly conducted at an international level, and a special feature of this book is the inclusion of chapters reviewing palliative care education in each continent. This enables practitioners and teachers to share knowledge across diverse healthcare systems and cultures. There is also an acknowledgement of the multi-professional team involved in palliative care, as education and training are looked at from the perspectives of doctors, nurses, and allied health professionals. The book is split into three distinct parts: Part 1 - sets the scene for existing palliative care education, both in the UK and internationally. Part 2 - focuses on the theory underpinning each aspect of teaching, learning and assessment, and then examines the practicalities of delivering these in the clinical setting. Part 3 - explores ways of building and nurturing a culture of learning in palliative care, whether as an individual or as an organization.

This book presents a timely and multidisciplinary update on the modalities currently available for treating the most feared symptom of patients diagnosed with cancer. The various cancer pain syndromes are explored in detail, covering those related directly to malignancy and those due to the after-effects of cancer therapy. Treatment modalities, including pharmacologic approaches, interventional procedures, and palliative surgical options, are discussed clearly and concisely, with provision of recommendations for the practitioner. Further topics include new and emerging treatments for cancer pain, survivorship considerations, pain management in special populations, and implementation of systems-based pain programs. The book has been written by a multidisciplinary group of experts, reflecting the evolution in pain and symptom management that has occurred in parallel with progress toward more targeted oncologic treatments. Oncologists, palliative care physicians, allied health professionals, and other practitioners involved in caring for cancer patients will find Fundamentals of Cancer Pain Management to be a rich source of evidence-based insights into effective pain management.

800 million people live in Africa, a continent which covers 22% of the world's surface and encompasses some 50 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 26 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 comprehensive reference focusing exclusively on palliative care and hospice development in Africa, and makes fascinating reading.

Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology. This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field--the first of its kind in over a decade. Over 60 renowned authors have been assembled to provide a thorough presentation of the state-of-the art research and literature, with topics including:
-Neuropsychological effects of chemotherapy and radiation therapy
-Bone marrow transplantation
-Important issues about quality of life during and following treatment
-Collaborative research among child-focused psychologists
-Standards of psychological care for children and adolescents
-Stress and coping in the pediatric cancer experience
-The role of family and peer relationships
The Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease represents both multidisciplinary and international efforts, an alliance between physicians and parents, and a combination of research and service. With a wealth of information of great interest to patients and their families, this volume will also be a welcome resource to the psychologists, psychiatrists, pediatricians, oncologists, nurses, and social workers who confront these issues as they help children and their families through the treatment, recovery, and grieving processes.

The idea of a philosophy of palliative care emerged with Cicely Saunders' vision for 'a good death', and was developed further with the WHO definition of palliative care. It is now being applied not only to cancer patients, but to all patients in end of life situations. As this 'palliative care approach' advances, it is important to pause and comment on its effectiveness. It is a philosophy of patient care, and is therefore open to critique and evaluation. Using the Oxford Textbook of Palliative Medicine, 3rd edition as their basic reference, Randall and Downie present their argument that the palliative care approach has become too busy and over-professionalised, and that it therefore has significant weaknesses. They examine the framework of the specialty - quality of life, autonomy, dignity, patient-centredness, and the priority assigned to relatives in the remit of care - and the moral problems associated with implementing such a philosophy. The resource implications of various health care policies are also discussed in relation to the WHO definition. Whilst the authors defend the achievements of palliative care and those who work in the profession, they present suggestions for an alternative philosophy. Their philosophy prompts many ethical and philosophical questions about the future of palliative care.

All long-term illnesses, whatever their diagnosis, have much in common. The difficulties and challenges that come with illness, and the strategies to overcome them, are shared by most patients. Managing an illness effectively and tackling the difficulties it causes can greatly improve how you feel and your quality of life. This book identifies the challenges posed by illness and suggests a wide variety of ways in which you might meet them. Key to this is the idea of becoming expert in managing your own illness and learning how best to deal with it. The authors accept that you know more than them about how you experience it, so that rather than telling you what to do, they offer a tool box from which you may pick the strategies that best suit you. The two authors, one a person with a long-term illness and one a doctor, combine their expertise and experience to offer a practical and comprehensive guide along your own unique journey. If you have a long-term illness, or if you care for someone who does, then this is a book for you.

The Oxford Handbook of Palliative Care returns for a third edition, maintaining the concise yet comprehensive format suited to the busy practitioner for quick access to key information, and fully updated to reflect changes in the palliative care landscape. Featuring an increased emphasis on non-malignant diseases such as dementia, this authoritative text combines evidence-based care with the bedside experience of experienced palliative care professionals to give the reader a complete overview of the physical, emotional, and spiritual aspects of care for the end-of-life patient. Symptom management is covered in detail, with updated formulary tables and syringe driver protocols, and a new chapter on international perspectives to broaden the reader's perception of methods for delivering end-of-life care. The third edition of the Oxford Handbook of Palliative Care is the essential companion for all of those working with adults, children, and families with palliative care needs, in both hospital and community settings. The following correction has been made online and will be included in the first reprint. Readers can get in touch with us directly using the contact details on the back of the book or at our online form via the address below with questions or comments: https://global.oup.com/academic/category/medicine-and-health Chapter 5. Page 109 The dose for Hyoscine butylbromide sc has been amended in line with NICE guidance (https://bnf.nice.org.uk/drug/hyoscine-butylbromide.html): '20-120 mg 4 hourly' has been corrected to '20-80mg 4 hourly'.

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.

This is the fourth volume in a new international, multi-contributed series aimed at providing practical, clinical guidance on how to deal with difficult symptoms related to specific cancer sites. In this volume the Editors bring together first-rate palliative care with oncological treatment for patients with advanced breast cancer. The book is presented in a user-friendly handbook format, with use of tables and algorithms to ensure that it is portable, accessible and can be read and referred to on, or before going to, the ward, or before a domiciliary visit. Specialists in palliative care and oncology settings, working in the acute sector and in hospices, will find the book invaluable. It will also appeal to consultants as well as specialist registrars, clinical nurse specialists and nurse practitioners in palliative care and oncology. The Palliative Care Consultations series is primarily aimed at those individuals working in an acute hospital cancer centre and/or tertiary referral centre. Books are designed to give the busy clinician advice on clinical problems, both those rarely encountered and those that are very common, but difficult. The volumes are site specific and each volume encompasses a review of the current oncological or haemato-oncological management of advanced disease with symptom control advice. These volumes will give clinicians excellent advice on symptom control in the context of palliative care. The books will also be of use and interest to other professions working in acute hospitals.

This book offers healthcare professionals, academics and anyone affected by cancer a fresh and original approach to the supportive care of people with cancer. It looks at the underlying reasons why cancer so often leads to high levels of distress and, more importantly, it suggests many practical ways distress can be minimised and prevented. The actual experiences of cancer patients, as recorded in their personal diaries, are combined with theory, research and practical clinical advice. In each of its seven chapters Cancer in Context takes a different perspective towards supportive care in cancer. It begins by considering how people in general manage and adjust to massive changes in their lives and, in particular, how they react to the threat of cancer. It goes on to examine the "lived experience" of people with cancer as they negotiate the many changes and challenges that follow their diagnosis. Of course cancer doesn't only affect the person who has the disease, it also impacts on families, partners and carers. One chapter explores these and other issues, such as sexual difficulties, the needs of older people, single people, and gay and lesbian couples. Chapter 4 shows that the social and cultural context of a person's life is critical to understanding their resources, the way the are treated, and the responses the make to serious illness. However, it is in the clinical context that professionals have an opportunity to minimise disruption to their patients' quality of life as they endure the notorious demands of oncology treatments. The book offers practical clinical advice on psychosocial aspects of conventional cancer treatments, common treatment difficulties, cancer rehabilitation and palliative care. Chapter 6 provides a summary of the burgeoning area of information and communication skills within healthcare and, finally, the book ends by considering how doctors, nurses, radiographers and other healthcare professionals can maintain their supportive care in light of such high levels of stress and burnout among these staff groups.

This is the third book in a new international, multi-contributed series aimed at providing practical, clinical guidance on how to deal with difficult symptoms related to specific cancer sites. There are few more distressing problems for patients and families than the development of a primary or secondary brain tumor. Treatment is often palliative, though intensive, from the start. Little firm evidence exists to guide the physician in caring for patients with seizures refractory to standard treatment. Most of the work is based on case reports or personal experience. This book draws the information together in an easily accessible form so that the book can be read and referred to on the ward, or before a domiciliary visit.
Specialists in palliative care and oncology settings, working in the acute sector and in hospices, will find this book invaluable. It will also appeal to consultants as well as specialist registrars, clinical nurse specialists and nurse practitioners in palliative care, oncology and neurology.

Patients with degenerative neurological disorders are among the most handicapped patients in medicine. Many of these diseases are incurable. Expert palliative care is the duty of every neurologist: however, to date, this has not been a standard feature of neurological practice or training. This book helps define a new field, namely palliative care in neurology. It brings together all necessary information for neurologists caring for a patient with advance disease. Palliative care is an approach to the management of patients with life-threatening illness that attempts to enhance comfort, relieve psychosocial and spiritual distress, assure respect for decision making, provide support for the family, and prepare the patient and family for the end of life. This unique book covers each of the many dimensions of palliative care as they relate to patients with advanced neurological disorders. Basic principles of palliative care and specific ethical issues (such as euthanasia, food and hydration and advance directives) are covered. The needs of populations with specific neurological disorders are described and the management of symptoms that are common to all is explored in detail. Each chapter introduces its topic using a case report which may be used directly for teaching purposes. The authors have put together an invaluable resource, which lays the foundation for further research in the field.

Fatigue in Cancer provides a comprehensive review of the key issues involved in the research and practical application of current evidence and best practice guidelines for addressing cancer-related fatigue. An international group of contributors draw together core topics relating to this complex area of cancer management, focusing on issues of definition, patho-physiology, treatment related variables and the psychological, social and emotional impact on patients, families and carers. Critical reviews of practical management strategies for both adults and children are included, as are the current approaches to the measurement of cancer-related fatigue in clinical and research contexts. The book contributes a multi-disciplinary overview of a problem increasingly overlooked by cancer scientists, researchers, and clinicians.
This book demonstrates the considerable capacity of cancer-related fatigue to impact on quality of life. Its multi-disciplinary focus and consideration of prioritised areas of future research will ensure that it will prove invaluable for all health professionals and researchers in oncology and palliative care.

This is the second book in a new international, multi-contributed series aimed at providing practical, clinical guidance on how to deal with difficult symptoms related to specific cancer sites. In gynaecology there are a number of symptoms which cause great distress to the individual and their families, and perplexity to the physicians and nurses caring for them. This volume covers the management of incurable disease for each of the most common cancers followed by a review of the most difficult symptoms that are encountered in this tumor group. Contributors provide scientific background to symptom-control chapters, with an indication of the sources and evidence for their advice.
Specialists in palliative care and oncology setings, working in the acute sector and in hospices, will find this book invaluable. It will also appeal to consultants as well as specialist registrars, clinical nurse specialists and nurse practitioners in palliative care, oncology and gynaecology.

Hospice is the premiere end of life program in the United States, but its requirement that patients forgo disease-directed therapies and that they have a prognosis of 6 months or less means that it serves less than half of dying patients and often for very short periods of time. Palliative care offers careful attention to pain and symptom management, added support for patients and families, and assistance with difficult medical decision making alongside any and all desired medical treatments, but it does not include a comprehensive system of care as is provided by hospice. The practice of palliative care and hospice is filled with sometimes overt (requests for hastened death in an environment where such acts are legally prohibited) and other times covert (the delay in palliative care referral because the health care team believes it will undermine disease directed treatment) ethical issues. The contributors to this volume use a series of case presentations within each chapter to illustrate some of the palliative care and hospice challenges with significant ethical dimensions across the three overarching domains: 1) care delivery systems; 2) addressing the many dimensions of suffering; and 3) difficult decisions near the end of life. The contributors are among the most experienced palliative care, hospice and ethics scholars in North America and Western Europe. Each has been given relatively free reign to address what they feel are the most pressing ethical challenges within their domain, so a wide range of positions and vantage points are represented. As a result, the volume provides a very diverse ethical exploration of this relatively young field that can deepen, stretch, and at times confront any simple notion of the challenges facing patients, their families, professional caregivers, and policy makers.

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-centred 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. The book focuses on the challenges of how professionals can keep the needs of the patient central in clinical care and how the patient can influence the direction of that care.

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.

End of Life in Care Homes 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 detailed research from both the UK and US, the book shows how the situation can be improved.

Anyone suffering from a terminal illness faces huge challenges, not only emotionally and physically, but also in the range of practical decisions they need to make. In your own time guides the patient through the choices that exist in the current system of medical care, helping them decide on the kind of care they want, and where they receive it - in the hospice or the home. It includes chapters on coming to terms with their situation, the help available to them at home, how to choose between a hospice and home, and advice on coping with the inevitable feelings and emotions of both patient and carer. Written by a GP with extensive experience in this area, the book is unique in presenting both a compassionate and practical guide for anyone affected by serious illness, one that will empower them with the information they need to maintain the highest possible quality of life in their final days.

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.

Palliative Day Care in Practice 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, hea;th economics, 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. It will prove valuable to specialist palliative care practitioners, researchers and purchasers interested in establishing or evaluating palliative day care.

Also published by Oxford University Press

Palliative Care in the Home Derek Doyle & David Jeffrey

Chronic and terminal illness - new perspectives on caring and carers Sheila Payne & Caroline Ellis-Hill

The specialty of palliative care has traditionally grown out of oncology and there has been little research into the needs of patients dying from causes other than cancer. Few non-cancer patients receive hospice in-patient, home care or day care although a good proportion of hospices say that their services are available to non-cancer patients. As a result, the importance of palliative care for non-cancer patients is now being increasingly recognized internationally, and in the UK a committee reporting to the Department of Health recommended that palliative care should be accessible to all patients who need such care. Palliative Care for Non-Cancer Patients considers the needs and experiences of patients dying from, for example, stroke, heart disease or dementia by,drawing on a range of disciplines and specialties in medicine. The provision of palliative care for patients dying from causes other than cancer raises a number of important questions for policy makers and purchasers. This book summarizes what is known about the needs of and appropriate service provision for people dying of causes other than cancer and begins to set a research agenda. Other books of interest from OUP: Palliative care in ALS, David Oliver, Gian Borsio & Declan Walsh

As someone approaches the end of their life, it is vitally important that they receive quality care and support, that their wishes are met, and that they are treated with dignity and respect. Pathways through Care at the End of Life is a comprehensive guide to providing excellent, person-centred end of life care. Following a pathway from initial conversations about end of life to care in the last days of life and after death, it covers assessing need and planning care, co-ordinating care between different agencies, and ensuring quality in different settings, such as at home, in a hospice, or in hospital. Good practice guidance on communication, ensuring the person's needs are met, support for their family and how to facilitate a good death is given. Case studies illustrate real life practice, and questions throughout each chapter encourage reflective practice. This book will be essential reading for all those working with people at the end of life, such as nurses, social workers, GPs and home carers, as well as students in these fields.

Cancer related pain can be successfully managed in the majority of patients by the use of medication. Some patients, however, have pain that does not respond to opioids, and require more specialised pain management techniques. Examples of such treatments are nerve blocks, radiotherapy, acupuncture and physiotherapy. This is the first book to provide detailed information on these and other methods of pain management. The Editors are experienced clinicians who have brought together an international, multi-professional team of pain specialists, palliative medicine practitioners and oncologists to provide a practical, comprehensive guide to the overall management of cancer pain. By effectively covering many different aspects of care, this book will appeal to all health care professionals involved with the frontline of cancer related pain.

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 palliative care at home, this book provides a definitive guide on how to provide effective care for people with far-advanced disease. Written by two palliative medicine specialists, both of whom have been family doctors, this book deals with all the physical, emotional, spiritual and social problems likely to be encountered by family doctors and community nurses caring for a patient and relatives at home. It deals in detail with emergencies, communications, ethical issues and emphasises throughout the importance of team work. 'It provides a wealth of information and advice on all aspects of palliative care at home'. Elaine Coleridge Smith Information Exchange, No. 13, 1995