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.

New York Times Bestseller A poignant love letter to Bloom's husband and a passionate outpouring of grief, In Love reaffirms the power and value of human relationships. In January 2020, Amy Bloom travelled with her husband Brian to Switzerland, where he was helped by Dignitas to end his life while Amy sat with him and held his hand. Brian was terminally ill and for the last year of his life Amy had struggled to find a way to support his wish to take control of his death, to not submerge 'into the darkness of an expiring existence'. Written with piercing insight and wit, In Love is Bloom's intimate, authentic and startling account of losing Brian, first slowly to the disease of Alzheimer's, and then on becoming a widow. It charts the anxiety and pain of the process that led them to Dignitas, while never avoiding the complex ethical problems that are raised by assisted death. 'Poignant, kind, funny and ultimately redemptive' - Alain de Botton, author of The Course of Love 'In Love is a thrillingly beautiful, laser-eyed book about love, life, mortality and, most remarkably, about the ways in which no one of the three can be separated from the others' - Michael Cunningham, author of The Hours and A Home at the End of the World

On a blustery night, detectives from the Massachusetts State Police knocked on Amy Gleason's door. Gleason, along with fellow nurse Kim Hoy, had helped a patient deal with pain and suffering at the end of her life. Now the patient was dead, and the two nurses were being investigated for murder. Both believed they had done the right thing, but they had no idea what it would cost them. In this captivating and powerful true story, Dr. Lewis M. Cohen uses the experiences of Gleason, Hoy, and the nursing assistant who accused them of murder to explore what happens when decisions about end-of-life care shift from the hospital to the courtroom and the church. Tracing this issue from the uproar over Terri Schiavo's feeding tube to the controversial figure of Jack Kevorkian, and to the legitimate threat of serial killer medical professionals, Cohen goes behind the scenes on both sides of this debate. He examines how advances in modern medicine have given us tremendous tools for prolonging life but have also forced us to address how we treat patients who are dying and suffering.

Respiratory symptoms such as breathlessness and cough are common in patients with advancing and incurable disease. For example, cancer, chronic cardiac and pulmonary disease, progressive neuromuscular disorders and degenerative disorders all give rise to varying degrees of respiratory distress which adversely affects the patient's quality of life. In recent years, there has been significant growth into the palliation of respiratory symptoms leading to practical ways of giving relief in hospices, hospitals and at home. The second edition of this popular title in the Supportive Care series includes non-malignant respiratory diseases such as tuberculosis in AIDS patients, cystic fibrosis and ventilator-dependent patients, and focuses on aetiology and diagnosis and management, emphasising symptoms, quality of life and psychosocial support. The underlying theme of the book is the application of modern research-based knowledge, in a humane way, for patients with advancing disease.

This comprehensive revision of the invaluable reference presents a rigorous survey of pain and palliative care phenomena across the lifespan and across disciplines. Grounded in the biopsychosocial viewpoint of its predecessor, it offers up-to-date understanding of assessments and interventions for pain, the communication of pain, common pain conditions and their mechanisms, and research and policy issues. In keeping with the current public attention to painkiller use and misuse, contributors discuss a full range of pharmacological and non-pharmacological approaches to pain relief and management. And palliative care is given expanded coverage, with chapters on interventive, ethical, and spiritual concerns. * Pain, intercultural communication, and narrative medicine. * Assessment of pain: tools, challenges, and special populations. * Persistent pain in the older adult: practical considerations for evaluation and management. * Acute to chronic pain: transition in the post-surgical patient. * Evidence-based pharmacotherapy of chronic pain. * Complementary and integrative health in chronic pain and palliative care. * The patient's perspective of chronic pain.* Disparities in pain and pain care. This mix of evolving and emerging topics makes the Second Edition of the Handbook of Pain and Palliative Care a necessity for health practitioners specializing in pain management or palliative care, clinical and health psychologists, public health professionals, and clinicians and administrators in long-term care and hospice.

aThis is a beautifully written account from the front lines of a struggle between a federal drug war complex determined to keep demonizing marijuana and the growing movement of patients and doctors who have found marijuana to be a valuable medicine. Voters in California and many other states have strongly supported the patients. The moving stories in this book show why.a
--Craig Reinarman, co-author of "Crack in America: Demon Drugs and Social Justice"

aChapkis and Webb have done a masterful job in describing the intricacies of the drug debate and offer brilliant analysis on a complex and controversial subject. Both baby boomers and the current teenage population will find this book important and compelling reading.a
--Terry Williams, author of "Crackhouse: Notes from the End of the Line"

Marijuana as medicine has been a politically charged topic in this country for more than three decades. Despite overwhelming public support and growing scientific evidence of its therapeutic effects (relief of the nausea caused by chemotherapy for cancer and AIDS, control over seizures or spasticity caused by epilepsy or MS, and relief from chronic and acute pain, to name a few), the drug remains illegal under federal law.

In Dying to Get High, noted sociologists Wendy Chapkis and Richard J. Webb investigate one community of seriously-ill patients fighting the federal government for the right to use physician-recommended marijuana. Based in Santa Cruz, California, the Wo/Menas Alliance for Medical Marijuana (WAMM) is a unique patient-caregiver cooperative providing marijuana free of charge to mostly terminally ill members. For a brief period in 2004, it even operated the only legalnon-governmental medical marijuana garden in the country, protected by the federal courts against the DEA.

Using as their stage this fascinating profile of one remarkable organization, Chapkis and Webb tackle the broader, complex history of medical marijuana in America. Through compelling interviews with patients, public officials, law enforcement officers and physicians, Chapkis and Webb ask what distinguishes a legitimate patient from an illegitimate apothead, a agooda drugs from abad, a medicinal effects from ajust getting high.a Dying to Get High combines abstract argument and the messier terrain of how people actually live, suffer and die, and offers a moving account of what is at stake in ongoing debates over the legalization of medical marijuana.

Handbook of Pain and Palliative Care:Biobehavioral Approaches for the Life Course Rhonda J. Moore, editor This book takes both a biobehavioral and a lifespan approach to understanding long-term and chronic pain, and intervening to optimize patients' functioning. Rich in clinical diversity, chapters explore emerging areas of interest (computer-based interventions, fibromyalgia, stress), ongoing concerns (cancer pain, low back pain), and special populations (pediatric, elderly, military). This coverage provides readers with a knowledge base in assessment, treatment, and management that is up to date, practice strengthening, and forward looking. Subject areas featured in the Handbook include: Patient-practitioner communication Assessment tools and strategies Common pain conditions across the lifespan Biobehavioral mechanisms of chronic pain Pharmaceutical, neurological, and rehabilitative interventions Psychosocial, complementary/alternative, narrative, and spiritual approaches Ethical issue and future directions With the rise of integrative perspective and the emphasis on overall quality of life rather than discrete symptoms, pain management is gaining importance across medical disciplines. Handbook of Pain and Palliative Care stands out as a one-stop reference for a range of professionals, including health practitioners specializing in pain management or palliative care, clinical and health psychologists, public health professionals, and clinicians and administrators in long-term care and hospice.

THE SUNDAY TIMES BESTSELLER 'Impossible to read with dry eyes or an unaltered mindset' Sunday Times 'Illuminating and beautiful' Cathy Rentzenbrink What if everything you thought you knew about death was wrong? How should we prepare for the facts of dying and saying our goodbyes? And what if understanding death improved your life? By turns touching and tragic, funny and wise, With the End in Mind brings together Kathryn Mannix ' s lifetime of medical experience to tell powerful stories of life and death.

This book examines the ethics of end of life care, focusing on the kinds of decisions that are commonly made in clinical practice. Specific attention is paid to the intensification of treatment for terminal symptoms, particularly pain relief, and the withdrawal and withholding of care, particularly life-saving or life-prolonging medical care. The book is structured into three sections. The first section contains essays examining end of life care from the perspective of moral theory and theology. The second sets out various conceptual terms and distinctions relevant to decision-making at the end of life. The third section contains chapters that focus on substantive ethical issues. This format not only provides for a comprehensive analysis of the ethical issues that arise in the context of end of life care but allows readers to effectively trace the philosophical, theological and conceptual underpinnings that inform their specific interests. This work will be of interest to scholars working in the area as well as clinicians, specialists and healthcare professionals who encounter these issues in the course of their practice.

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.

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.

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.

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.

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 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.

When the first edition of this book published in 1994, the psychoimmunology of cancer was still emerging as a topic for serious scientific study. Now, less than ten years later, there is a huge quantity of academic literature about the relationships between psychological variables, the immune system and cancer growth, accompanied by a lively popular interest.

In this new edition leading specialists have provided broad critical reviews of the different aspects. Part I, which presents the biological background, will be of particular interest to those with technical knowledge of the relevant laboratory based disciplines. It covers mechanisms mediating the effects of psychological status in the immune system, and anti-cancer mechanisms involving the immune system. Part II is clinically orientated, and accessible to a wide audience. Whether psychotherapeutic interventions can help patients live longer, as well as coping better, is obviously the key question and several contributors consider the clinical evidence for this. A new, speculative chapter on the spiritual context of immunity and cancer has also been added.

The psychoimmunology of cancer involves many complex issues, understanding of which remains far from complete. However, the contributors, besides reviewing the current state of knowledge and the implications for cancer patients, offer predictions for the future and ideas about further research.

From reviews of the first edition:

'The chief quality of this book is its presentation of an excellent but critical overview of the entire range of what is today called 'psychoimmunology', and it is to be recommended to all who are interested in the subject.' Annals of Oncology

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.

Written by an international team of authors the Oxford Textbook of Communication in Oncology and Palliative Care integrates clinical wisdom with empirical findings. It draws upon the history of communication science, providing the reader with a comprehensive curriculum for applied communication skills training. An essential resource, the Oxford Textbook of Communication in Oncology and Palliative Care is filled with tips and strategies for effective communication about difficult and challenging communication. In focusing on cancer and the end-of-life, it deals with the existential and spiritual challenges found across all of medicine, providing deep insights into what is at stake and how clinicians might optimally respond. This authoritative and wide-ranging book provides clinicians with state-of-the-art and evidence-based guidelines to achieve effective, patient-centred communication in the clinical settings of oncology and palliative care. Thoroughly revised and updated, this new edition includes sections on the curriculum for nurses, the core curriculum, and an introductory section on communication science. The chapters embrace specialty issues across the clinical disciplines, from enrolling in clinical trials, working in teams, and discussing genetic risk, to talking about sexuality, infertility, and intercultural issues. An educational perspective is also provided, with chapters covering communication skills training, how to evaluate courses, and international models of training.

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.

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.

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.