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.

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.

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.

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.

Christopher Kerr is a hospice doctor. All of his patients die. Yet he has tended thousands of patients who, in the face of death, speak of love, meaning and grace. They reveal that there is hope beyond cure as they transition to focus on personal meaning. In this extraordinary and beautiful book, Dr. Kerr shares his patients' stories and his own research pointing to death as not purely the end of life, but as a final passage of humanity and transcendence. Drawing on interviews with over 1,200 patients and more than a decade of quantified data , Dr. Kerr reveals why pre-death dreams and visions are remarkable events that bring comfort and exemplify human resilience. These are not regular dreams. Described as "more real than real," they frequently include loved ones long gone and mark the transition from distress to acceptance. These end-of-life experiences help patients restore meaning, make sense of the dying process and assist in reclaiming it as an experience in which they have a say. They also benefit the bereaved who get relief from seeing their loved ones pass with a sense of calm closure. Beautifully written with astonishing stories, this book, at its heart, celebrates the power to reclaim how we die, while soothing the bereaved who witness their loved ones go with unqualified grace.

Textbook of Palliative Care is a comprehensive, clinically relevant and state-of-the art book, aimed at advancing palliative care as a science, a clinical practice and as an art. Palliative care has been part of healthcare for over fifty years but we still find ourselves having to explain its nature and practice to colleagues and to the public in general. Healthcare education and training has been slow to recognize the vital importance of ensuring that all practitioners have a good understanding of what is involved in the care of people with serious or advanced illnesses and their families. However, the science of palliative care is advancing and our understanding concerning many aspects of palliative care is developing rapidly. The book is divided into separate sections for ease of use. Over 100 chapters written by experts in their given fields provide up-to-date information on a wide range of topics of relevance to those providing care towards the end of life no matter what the disease may be. We present a global perspective on contemporary and classic issues in palliative care with authors from a wide range of disciplines involved in this essential aspect of care. The Textbook includes sections addressing aspects such as symptom management and care provision, organization of care in different settings, care in specific disease groups, palliative care emergencies, ethics, public health approaches and research in palliative care. This Textbook will be of value to practitioners in all disciplines and professions where the care of people approaching death is important, specialists as well as non-specialists, in any setting where people with serious advanced illnesses are residing. It is also an important resource for researchers, policy-and decision-makers at national or regional levels. Neither the science nor the art of palliative care will stand still so we aim to keep this Textbook updated as the authors find new evidence and approaches to care.

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.

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.

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

A focus throughout on lifespan perspectives and a consideration of palliative care across all ages. Consideration of different cultural perspectives, beliefs, thoughts and practices outside Western societies and dominant paradigms. Integrates primary research throughout, including a focus on contemporary research from social media. Complements mainstream psychological approaches to life-limiting illness by exploring death, dying and palliative care with a critical health psychology lens.

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.

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.

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.

Excellent end of life care for people with heart failure is challenging but possible. Failure to address this aspect of care has serious consequences for patients, their families, clinicians and the use of health resources. Heart Failure: From Advanced Disease to Bereavement illustrates the complexity and importance of end of life care for patients with advanced heart failure. This book is a pocket reference for everyday use in the clinic, ward or home visit for all doctors, nurses and AHPs caring for people with advanced heart failure. It outlines the underlying pathophysiology of heart failure, summarises standard pharmacological and device therapy, and sets the context of the challenges resulting from an unpredictable course of disease. In easily digestible summaries, this book presents practical advice about how and when to integrate a palliative care approach alongside standard heart failure management, how to communicate honestly in the face of uncertainty, the rationalisation of medication and device therapies at the end of life, symptom control, care for the dying, and care after death.

The care home sector is large, with over 400 000 residents in the UK and a similar number employed within the homes. It is therefore an area of considerable economic importance. Care home residents are often very old, and many have multiple physical and mental health needs, meaning that their care poses particular challenges. They are also a distinctly and profoundly marginalised group who are often invisible in the wider debates on quality of care including those about care homes.
Mental Health and Care Homes is a coherent and evidence-based text exploring these issues. Bringing together both clinical and research perspectives it will help those working in the care home sector to deliver high quality care and support to both residents and staff. This important, yet neglected, area is thoroughly reviewed by a range of experts including residents, family carers, staff, researchers, and clinicians.
The book has four sections: 'the inside view' which includes several first-hand accounts of care home life; 'the outside view' which discusses the regulatory, funding, and legislative context in which care homes operate; 'mental health and care', a detailed review of the major mental and other health issues that arise in care homes, as well as interventions and services to offer support; and a section exploring the 'promotion of health and wellbeing' including examples of good practice. It concludes by synthesising key themes and setting an agenda for further enquiry.
The book is written in a style that encourages engagement, with the inclusion of contemporary case studies and examples, making it topical and readable. It will be valuable for a broad professional and vocational audience across both health and social care, as well as students and researchers.

With a rapidly expanding elderly population, there has been a marked increase in the incidence of dementia, and this dreadful, debilitating illness now affects - directly or indirectly - millions of people across the world. Dementia throws up a number of particular clinical, ethical, and conceptual problems, which mostly reflect complicated evaluative decisions, for instance about diagnosis and the distinction between normal and abnormal ageing.
Different disciplines approach dementia in different ways - thus there are disease, cognitive neuropsychology, and social constructivist models of dementia, Underlying these models and approaches, each of which is clinically useful, are various and differing conceptual committments. These models carry ethical implications concerning how we ought to treat people suffereing from dementia.
Thinking through Dementia offers a critique of the main models used to understand dementia-the biomedical, neuropsychological, and social constructionist. It discusses both clinical issues and cases, together with philosophical work that might help us better understand and treat this illness. Drawing on philosophical critique of models of dementia, as well as empirical data and clinical experience, the book unifies the biological, psychological, and social accounts of illness and disease.
Highly original and thought provoking, this book will interest psychiatrists, philosophers, psychologists, and anyone involved in the care and management of those with dementia.

* Provides valuable guidance for all student and practising SLTs who are working with older people with communication and swallowing difficulties. * Offers a holistic approach, not only looking at the physiological/biological effects, but taking into account the psychological and social impacts of aging. * Bridges theory and practice, with an emphasis on practical strategies and advice for clinicians to use in their daily work. * Dispels the myths which sound aging (due to a lack of knowledge of what is considered to be within normal range), which can lead to misdiagnosis.

Hospital palliative care teams have been established in rapidly increasing numbers over the last 20 years, as it has been recognized that hospices can never transfer the philosophy and practice of palliative care into the acute sector by simply existing; the 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 extensive experiences 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 practical guidance and down to earth advice on a range of problems they might encounter. Using a problem focused and practical approach, Palliative Care in the Acute Hospital Setting: A Practical Guide is filled with case-based problems to help readers identify 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 them continue to flourish.
Written in an accessible style with short and focused chapters, this clearly laid out book helps readers find the information they need to tackle particular problems easily and with confidence. With a supportive outlook and covering the non-clinical management aspects of palliative care, this book is the ideal guide for palliative care specialists making the transfer from hospice to hospital, and for those setting up palliative care teams in the acute hospital setting.

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.