This book encourages health professionals to reconceptualise their practice in the light of the fact that their patients are deteriorating and dying, supporting them in their dichotomous role which involves affirming that person's life whilst acknowledging that that life is ending. Professionals are encouraged to think laterally, to be creative in their use of their core skills, and to use their life skills and experience to change the focus of their interventions. By making these changes, those involved with caring for the dying will be able to address issues related to burnout and feeling de-skilled. The authors share their considerable experience with the reader - what works for both patient and carer/professional when working in this field. By providing workable solutions, they empower those in disempowering situations, such as when working with terminally ill children and adults. The book is truly holistic and client-centred in its approach, upholding the philosophy of palliative care. Aimed at all who interact with children and adults who have a life-limiting condition or who are dying Offers practical examples of approaches to dilemmas and emotional issues commonly face by those working in palliative care Encourages professionals to think laterally, to be creative in their use of core skills, and to use their life skills and experience to change the focus of their interventions Moves the emphasis away from the medical model to the emotional and spiritual influences on quality of life Offers clear, workable guidelines and demonstrates practical solutions, based on proven theory and experience, to problems encountered on a day-to-day basis by patients and those coming into contact with them

The first of its kind, this book describes pediatric palliative care in more than 23 countries. Each region in the world is covered and countries included are both resource poor and rich. Authors are multidisciplinary and regarded nationally and internationally in their field. Clinicians, advocates, policymakers, funders, and researchers will learn how programs were developed and implemented in each country. Authors describe children for whom pediatric palliative care is needed and provided for in their country. When applicable, a brief history of pediatric palliative care is included noting especially policy changes and legislative acts. For example, the chapter on Poland describes how pediatric palliative care grew from the Catholic church into a national movement spearheaded by several health care workers. The Pole national spirit that brought them through a change in political regime has also been a driving force in the pediatric palliative care movement. The chapter on South Africa, for example, illustrates how a resource poor country has been able to leverage philanthropic and government funding to make its dream of having an infrastructure of pediatric palliative care a reality. These are just a few examples of the inspiring stories that are included in this book. Readers from countries who wish to start a pediatric palliative care program, or advance an existing program, will learn valuable lessons from others who have faced similar barriers. Introduction and concluding chapters highlight the strengths and weaknesses of the modern pediatric palliative care movement.

Palliative medicine was first recognised as a specialist field in 1987. One hundred years earlier, London based doctor William Munk published a treatise on 'easeful death' that mapped out the principles of practical, spiritual, and medical support at the end of life. In the intervening years a major process of development took place which led to innovative services, new approaches to the study and relief of pain and other symptoms, a growing interest in 'holistic' care, and a desire to gain more recognition for care at the end of life. This book traces the history of palliative medicine, from its nineteenth-century origins, to its modern practice around the world. It takes in the changing meaning of 'euthanasia', assesses the role of religious and philanthropic organisations in the creation of homes for the dying, and explores how twentieth-century doctors created a special focus on end of life care. To Comfort Always traces the rise of clinical studies, academic programmes and international collaborations to promote palliative care. It examines the continuing need to support development with evidence, and assesses the dilemmas of unequal access to services and pain relieving drugs, as well as the periodic accusations of creeping medicalization within the field. This is the first history of its kind, and the breadth of information it encompasses makes it an essential resource for those interested in the long-term achievements of palliative medicine as well as the challenges that remain.

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

A landmark publication in the field, this state of the art reference work includes contributions from leading thinkers across a range of disciplines on topics including ADHD, autism, depression, eating disorders and trauma. It is an essential resource for all those involved or interested in child mental health.

The Collaborative for Palliative Care ("Collaborative") is a grassroots consortium of public and private organizations that came together in 2005 for the purposes of studying the increasing need for palliative care and the methods for such care. It has grown from a small fledgling group to a membership of over 50 community-based organizations and volunteers dedicated to improving care of the seriously ill through education, research and advocacy. The Collaborative bridges policy, research and practice in its initiatives and vision for the future. Partners in Palliative Care examines specific areas of concern that the Collaborative has addressed in its education programs and advocacy, as well as the collaborative processes that have been so successful in building community assets. Areas of concentration have been diverse and include advance care planning, relational communication paradigms, community capacity building, the role of culture and spirituality in palliative care, the meaning of pain and suffering for seriously ill individuals, and the ethics of health care costs in palliative and end-of-life systems of care. This book was originally published as a special issue of the Journal of Social Work in End-of-Life and Palliative Care.

A practicing music thanatologist provides an insider's history of this remarkable profession, which combines music, medicine, and spirituality to help the terminally ill and their families face the end of life. Reflecting on the author's experiences as a music-thanatologist, Jennifer Hollis's Music at the End of Life: Easing the Pain and Preparing the Passage is an enlightening and emotional examination of the ways in which the experience of dying can be transformed with music. Music at the End of Life highlights the unique role music has come to play in hospice and palliative medicine. Jennifer Hollis interweaves narrative memoir, the personal experiences of fellow music-thanatologists and caregivers, and extensive research to demonstrate the transformative power of music when curing is no longer an option. Through story after unforgettable story, Hollis offers a new vision of end-of-life care, in which music creates a beautiful space for the work of letting go, grieving, and saying goodbye.

Nutrition, appetite, and involuntary weight loss are issues that affect a large number of cancer patients and cancer survivors. Aspects such as symptom management, behavioural modification, exercise and medication are all important aspects of cancer care, but nutritional issues at the end of life can be accompanied by contentious ethical factors as well as religious and cultural influences that need to be addressed by health professionals. This book enables physicians, nurses and also dieticians to better discuss these complex issues with patients and their families.
This comprehensive reference book provides both background information and practical, clinical advice for managing the cancer patient at all stages of their disease trajectory. It includes information that relates to patients who are continuing to receive disease-specific therapy, the cancer survivor, as well as patients with advanced or recurrent cancer receiving palliative care.
Basic principles such as epidemiology and physiology set the scene, leading into the cachexia/anorexia syndrome, treatment options, nutritional counselling, enteral and parenteral nutrition, complementary/alternative therapies, exercise, clinical outcomes measures in each of the clinical groups, and focus on special populations and their specific needs. Multidimensional, interdisciplinary clinical evaluation and treatment is emphasised, and ethical, religious, and cultural factors are also addressed.
Multidisciplinary in nature, this book draws on the experience of the editors' work across the fields of oncology, palliative care, surgery, primary care, nursing, dietetics and nutritional science. It will prove invaluable to all general practitioners, internists, medical oncologists and surgeons, nurses, palliative care specialists and related professionals involved in the care of the cancer patient.

End-of-life issues in cardiology are becoming increasingly important in the management of patients in the cardiac unit, but there is frequently a lack of understanding regarding their impact on cardiology practice. The cardiac unit is increasingly becoming the location whereby a number of key clinical decisions relating to end-of-life care are being made, such as the decision to remove medications, the appropriate removal of cardiac devices, the management of do not resuscitate orders and the requirement for other cardiac procedures in light of the management of the terminally ill cardiac patients. Those working in palliative care need input from the cardiovascular team as the cardiologist is frequently still managing these patients until they are moved to the hospice. That this move into a hospice is often delayed until the very last moment, there is considerable onus on the cardiovascular management of these patients to be much broader in scope and take account of some of the more palliative medical decisions needed in this group of patients. This concise reference will detail the practical issues open to cardiovascular physicians and those medical professionals who manage patients reaching the end of their life from a cardiology perspective. It will detail the full management options open to them to ensure that their practice is in line with the requirements of the patient nearing the end of their life whether the cause be cardiovascular in origin or who need appropriate management of secondary cardiovascular symptoms. It will also include the various ethical, cultural and geographical issues that need to be considered when managing these patients.

The rapidly evolving field of Palliative Care focuses on the management of phenomena that produce discomfort and that undermine the quality of life of patients with incurable medical disorders. The interdisciplinary clinical purview includes those factors - physical, psychological, social, and spiritual - that contribute to suffering, undermine the quality of life, and prevent a death with comfort and dignity. Palliative Care is a fundamental part of clinical practice, the "parallel universe" to therapies directed at cure or prolongation of life. All clinicians who treat patients with chronic life threatening diseases are engaged in palliative care, continually attempting to manage complex symptomatology and functional disturbances. The scientific foundation of palliative care is advancing, and similarly, methods are needed to highlight, for practioners at the bedside, the findings of empirical research. Topics in Palliative Care Series is divided into sections that address a range of issues. Addressing aspects of sumptom control, psyshocsoical functioning, spiritual or existential concerns, ethics, and other topics, the chapters in each section review the given area and focus on a small number of salient issues for analysis. The authors present and evaluate existing data, provide a context drawn from clinical and research settings, and integrate knowledge in a manner that is both practical and readable. The specific topics covered in Volume 5 are Cultural issues in Palliative Care, Palliative Care in Geriatrics, Communication Issues in Palliative Care, Outcomes Research in Palliative Care, Opiod Tolerance; Reality of Myth?, and Pain and other symptoms: Treatment Challenges.

Few publications have changed the landscape of contemporary psychology more than Richard Lazarus and Susan Folkman's landmark work, Stress, Appraisal, and Coping. Its publication in 1984 set the course for years of research on the dynamic processes of psychological stress and coping in human beings. Now more than a quarter-century later, The Oxford Handbook of Stress, Health, and Coping pushes the field even further with a comprehensive overview of the newest and best work in this dynamic subject. Edited by Susan Folkman and comprising chapters by the field's leading scientists, this new volume details the expanded knowledge base that has emerged from extensive research on stress and coping processes over the last several decades. Featuring 22 topic-based chapters - including two by Folkman - this volume offers unprecedented coverage of the two primary research topics related to stress and coping: mitigating stress-related harms and sustaining well-being in the face of stress. Both topics are addressed within their relevant contexts, including chronic illness, calamity, bereavement, and social hardship. The Oxford Handbook of Stress, Health, and Coping is an essential reference work for students, practitioners, and researchers across the fields of health psychology, medicine, and palliative care.

A practical guide for understanding how palliative care can improve quality of life for patients and their caregivers. Robin Bennett Kanarek was a registered nurse working with patients suffering from chronic medical conditions when her ten-year-old son was diagnosed with leukemia. As her son endured grueling treatments, Robin realized how often medical professionals overlook critical psychological, emotional, and spiritual support for people with life-threatening illnesses. Living Well with a Serious Illness is the culmination of decades of Robin's work to advance the field of palliative care. Although palliative care is often associated with hospice and end-of-life planning, Kanarek argues for a more expanded definition that incorporates palliative care earlier in patients' journeys. Living Well with a Serious Illness helps patients and their caregivers understand • what palliative care entails • how to access the support they need when going through a serious illness • what questions to ask medical professionals • how to navigate advanced care planning • definitions of common terminology used with end-of-life planning • the importance of spiritual care, coping strategies, and emotional support • how to become an advocate for palliative care This book illuminates the importance of seeing patients as individuals who can benefit from care for their body, mind, and spirit—the core tenet of palliative care.

This book on end of life examines how to include people with intellectual and developmental disability in the inevitability of dying and death. Comprising 17 chapters, it addresses challenging and under-researched topics including suicide, do-not-resuscitate, advance care planning, death doulas and accessible funerals. Topics reflect everyday community, palliative care, hospice and disability services. The book proposes that the rights of people with disabilities should be supported up to and after their death. Going beyond problem identification, the chapters offer positive, evidence-supported responses that translate research to practice, together with practice examples and resources grounded in lived experience. The book is applicable to readers from the disability field, and mainstream health professionals who assist people with disability in emergency care, palliative care or end-of-life planning

This book brings together the knowledge, skills and attitudes of specialists in both Respiratory Medicine and Palliative Medicine to focus on the palliative care of patients with respiratory diseases. It deals not only with end of life care but also with symptom control and supportive care to improve the quality of life of those living their lives with advanced progressive lung disease.

Medical care of the terminally ill is one of the most emotionally fraught and controversial issues before the public today. As medicine advances and technologies develop, end-of-life care becomes more individualized and uncertain, guided less by science and more by values and beliefs. The crux of the controversy is when to withhold or withdraw curative treatments--when is enough, enough?
Political debates rage about when treatment is no longer effective; difficult cases are contested in courts; and the media devour the most sensational aspects of end-of-life care. In all this excitement and controversy, what is sadly overlooked is the extreme pressure that care of the terminally ill puts on medical staff as they deal with patients and their families and make life-or-death decisions. That pressure--the psychological strain and continuing uncertainties--is magnified when the patients are children.
David Bearison looks at this controversial issue from the perspective of the medical staff caring for dying children. Not just doctors, but nurses and counselors as well. By capturing their stories--as no other book has, Bearison is able to move beyond broad, abstract ideas about end-of-life care to convey the situated contexts of such care, including the complications, disagreements, frustrations, confusions, and unexpected setbacks.
In addition to a discussion of questions surrounding whether to withhold or withdraw curative treatments, When Treatment Fails explores the crucial concerns of those medical practitioners who care for dying children: education and training, relation with one another, communicating with patients and families, and finally, coping and moving on.Ultimately, the threads connecting these themes are the great costs and rewards of this difficult work, and the lessons that can be drawn from the nitty-gritty experiences of medical practitioners who struggle to find the balance between trying to defeat death and trying to provide comfort.

This volume speaks to the issue of occupational therapy practice with the patient in pain. The hows and whys of treatment are explored in a broad range of chapters written by and for professionals in the field of occupational therapy.

Death is a natural part of life. But it has become a painful, protracted, humiliating process that is often inappropriate for the healthcare patient, puts an undue financial and emotional burden on the family, and provides a model of improper care for physicians in training. And it's expensive--about 22 percent of all medical expenditures are for people in the last year of their lives. Further, while studies show that 90 percent of all people would prefer to die at home surrounded by family and friends, the reality is that more than 70 percent die in institutions. As Dr. Ken Fisher argues so passionately in this book, it's time for a change. End-of-life care in the U.S. has evolved over the years into a nightmare for patients and family members, and it has created a near-crushing financial burden on the medical system that is not just excessive but unsustainable. It has driven the cost of healthcare out of reach for many people, and it is a large factor in preventing the creation of universal coverage. In Defiance of Death reviews the current state of end-of-life care and highlights its many problems from a variety of economic, political, and social perspectives. Fisher and Rockwell illuminate the ethical dilemmas we all face as technology allows us to prolong life--but at a huge human and financial cost. This book documents these problems and provides a historical perspective of how our medical system evolved. It argues that America's "defiance of death" is far too costly and recommend that all stakeholders--including the public, medical community, Congress, and business leaders--join together to create a system that improves end-of-life care for everyone involved. This book, withworkable solutions to improve our medical system, helps point the way.

Having a serious illness can be incredibly difficult, especially when there is no cure. As your disease progresses, not only your physical health, but your entire well-being may be affected. Unfortunately, most of your medical care may only treat your body. However, there are things that you and your health care team can do to help you feel better as a whole person.
This collaborative, skill-based program will teach you practical techniques to help you cope with your illness and the stress of everyday life. You will learn strategies to improve your mood and deal with feelings of anxiety, depression, or anger. Social support is key to successful coping and you may need to strengthen your relationships, especially with caregivers. It is also important to work with your medical team and develop more effective ways to manage your symptoms. You will set goals regarding your care as well as your quality of life. In addition, you may choose to explore your spirituality and practice tools that promote personal growth.
Your facilitator will work with you to tailor the program to your individual needs. This workbook includes user-friendly forms to help you apply the content of the sessions to your personal situation. At the end of this program, you will have a new set of hands-on skills to master as you continue to grow.

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 that 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.

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.

This is the fifth book in an 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 head and neck cancer. Head and neck cancer is one of the most frightening and distressing cancers for patients and their families as it affects appearance, the ability to speak, and the ability to eat. Pain which is difficult to treat, infection, and disfiguring surgery with wounds that often do not heal, are common accompaniments of advanced disease. In addition, psychological distress, loneliness, and isolation are often experienced by patients. Head and neck cancer is not that common but, when it does occur, it very often needs specialist help from palliative care and hospice clinicians. There is little written on this subject and this book provides a comprehensive, practical guide that draws together all the information in an easily accessible format. It is an essential reference for on the ward, or before going to a home visit. 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 give clinicians excellent advice on symptom control in the context of palliative care. The books are also of use and interest to other professions working in acute hospitals.

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.

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.

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.

Pruritus is a prevalent symptom in many skin conditions. However, much less is known about pruritus without primary skin disease. This problem affects most medical specialties, notably palliative care, haematology, oncology, internal medicine, hepatology, nephrology, anaesthesiology,
immunology and psychiatry. Specialists from these disciplines each see few patients with severe pruritus and therefore have only limited possibility to learn from their experience. In response, this book aims to build a bridge of knowledge and evidence between the various different specialties.
Pruritus can cause extreme discomfort in chronic cancer patients or in people who are receiving cancer treatment, as well as patients with non-malignant terminal illnesses. Knowledge about the pathophysiology of pruritus is scattered through many clinical specialties and this book brings this
information together in a readily accessible compendium of knowledge which will be of value to physicians of any specialty. An international group of contributors cover the neurophysiology, clinical assessment, and measurement of scratching activity as well as opiod-induced pruritus, pruritus in
haematological disorders, neuropathic pruritus, psychogenic pruritus and therapies and treatment.
Aimed primarily at palliative care physicians, oncologists and nurses, the book will also prove valuable to all health care professionals who require guidelines to assist with effective symptom control thereby ensuring best quality of life for their patients.