Amytrophic Lateral Sclerosis (ALS or motor neurone disease) is a progressive neurodegenerative disease that can cause profound suffering for both the patient and their family. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow its progression. Palliative care must therefore be integral to the clinical approach to the disease. Palliative Care in Amyotrophic Lateral Sclerosis: From diagnosis to bereavement reflects the wide scope of this care; it must cover not just the terminal phase, but support the patient and their family from the onset of the disease. Both the multidisciplinary palliative care team and the neurology team are essential in providing a high standard of care and allowing quality of life (both patient and carer) to be maintained. Clear guidelines are provided to address care throughout the disease process. Control of symptoms is covered alongside the psychosocial care of patients and their families. Case studies are used to emphasise the complexity of the care needs and involvement of the patient and family, culminating in discussion of bereavement. Different models of care are explored, and this new edition utilizes the increase in both the evidence-base and available literature on the subject. New topics discussed include complementary therapies, personal and family experiences of ALS, new genetics research, and updated guidelines for patient care, to ensure this new edition remains the essential guide to palliative care in ALS.

It was a low-level panic at first, but very quickly there were big changes taking place. Day by day, wards were being cleared to make way for Covid-positive patients. Things were getting worse by the day. For the first time in my nursing career, I felt scared. As a palliative care nurse, it is Kelly Critcher's job to look death in the eye - to save a patient while the fight can still be won, and confront life's end with grace and kindness when it can't. In early 2020, everything changed for nurses on the NHS front line. Working on Covid wards and the High Dependency Unit, Kelly spent the height of the coronavirus crisis at Northwick Park hospital - perhaps the UK hospital most deeply ravaged by the illness. She, and many others like her, battled tirelessly in a critical care unit pushed to breaking point, delivering the bad news and fighting the good fight, day-in, day-out, throughout the gravest test our health service has faced since its inception. Kelly's story weaves together her raw, emotional diaries from the COVID frontline with a broader reflection on the truths about a life spent caught between battling for her patients' lives and helping them face down death with courage and compassion. Bringing together the enormity of the last twelve months - and the scars it will leave - this is a book for our times.

Riveting in their emotional clarity and utterly jargon free, these 30 stories from real life penetrate how we grieve and how we can help those who grieve- whether the griever is oneself, someone we care about, or a client or patient. Lynne Dale Halamish, an internationally respected grief counsellor with more than 20 years' experience, and Doron Hermoni, a family physician, researcher, and educator, present vignettes from practice that show how death- lingering, unexpected, violent, or self-inflicted- and the loss of a relationship- to oneself or with a child, sibling, parent, mate, grandparent, or friend- give life to grief, together with the process by which each person fully encounters his or her grief. Each story is no more than two or three pages, and the authors follow each one with a short summary of its teachings and a selection of annotated recent references for those who wish to read more about a topic. Looked at in relief, the stories reveal a master grief counsellor at work.

Supportive Care for the Renal Patient Second Edition provides a comprehensive, evidence-based overview of supportive care for the nephrology patient. An international group of contributors emphasise the continuum of palliative care from the time of diagnosis through to end-of-life care and the issues surrounding withdrawal of dialysis. The book addresses the psychological impact of the disease, the importance of involving the patient in making decisions about their care, ethical considerations, the role of the family and the multidisciplinary team. This new edition includes two new chapters on conservative management of advanced kidney disease (AKD) and dialysis in the very elderly. The chapters covering non pain symptoms, advance care planning, quality of life, psychological and psychiatric consideration and end-of-life care have also be completely revised to include new evidence and current thinking. This book will be of particular interest to palliative care practitioners; nephrologists, who increasingly need to know more about palliative care; nurse practitioners, dialysis nurses, social workers, dieticians, and psychiatric consultants. ABOUT THE SUPPORTIVE CARE SERIES Supportive care is the multidisciplinary holistic care of patients with chronic and life-limiting illnesses and their families - from the time around diagnosis, through treatments aimed at cure or prolonging life, and into the phase currently acknowledged as palliative care. It involves recognising and caring for the side-effects of active therapies as well as patients' symptoms, co-morbidities, psychological, social and spiritual concerns. It also values the role of family carers and helps them in supporting the patient, as well as attending to their own special needs. Unlike traditional palliative care, which grew from the terminal care of cancer patients, supportive care is not restricted to dying patients nor to cancer. This series covers the support of patients with a variety of long-term conditions, who are currently largely managed by specialist medical teams in hospital and by primary care teams in community settings. Each volume therefore provides a practical guide to the supportive care of patients at all stages of illness. Series Editor: Sam H. Ahmedzai

Improving care for the patients who are in the last phase of their lives has been a field that most health care providers have struggled with during last few years. Having worked with hundreds of providers throughout the country, these experienced authors know what providers need when it comes to implementing a quality improvement project. This guide will provide user-friendly, step-by-step instructions on how to implement a quality improvement project in the full range of care settings. The instructions will be brought to life with specific examples from actual successful projects and key information on the best practices in the industry. Readers will also be pointed to resources available online and elsewhere, with information on how to access them. The guide will be written in an informal, maximally helpful style, with checklists, tables, and boxed information. Answering 80% of the questions in less than half the space, The Common Sense Guide is the perfect portable companion to Dr. Lynn's desk reference, Improving Care for the End of Life. The book will be of great interest to all health care professionals involved in the care of those with serious chronic illness -- doctors, nurses, social workers, chaplains, clinic administrators, quality improvement experts, and so forth.

Individuals and families face challenges at the end of life that can vary significantly depending on social and cultural contexts, yet more than ever is now known about the needs that cut across the great diversity of experiences in the face of dying and death. A number of behavioural interventions and clinical approaches to addressing these needs have been developed and are available to help providers care for clients and assist them in achieving their goals. Perspectives on Palliative and End-of-Life Care: Disease, Social and Cultural Contexts explores how these interventions can be used to address a range of issues across social and cultural contexts for those in need of end of life care. With perspectives from experienced clinicians, providers, and caregivers from around the world, the book offers a strong foundation in contemporary evidence-based practice alongside seasoned practice insights from the field and explores interventions for people as diverse as HIV caregivers in Africa and individuals dying with dementia. In addition, readers will learn about the process of caring for individuals with chronic illnesses including severe mental illness; weigh the impact of policy regulations on the availability of and access to palliative care and interventions; and be able to compare the different issues experienced by family caregivers and formal caregivers. As the companion volume to Perspectives on Behavioural Interventions in Palliative and End-of-Life Care, this book will be of interest to a wide variety of individuals, such as academics, researchers and postgraduates in the fields of mental health, medicine, psychology and social work. It will also be essential reading for healthcare providers and trainees from psychosocial and palliative medicine, social work and nursing.

This book describes the current state of the art in the field of palliative care in children and adults. Special emphasis is placed on addressing the efficacy and effectiveness of palliative care models, pain and symptom management, and on measuring quality of life. In addition the book evaluates current research methods in palliative care and suggests suitable alternatives. Finally the book bridges the gap between science and practice by providing the reader with the current evidence and how it can be applied in the practice setting.

Practical, emotional, and spiritual guidance
The time may come when you or a loved one has to face a life-threatening illness; when you realize that you or your loved one may be dying. It's never easy to think about the last years of life, but being prepared can help you have your hopes and wishes realized. By taking the time now to plan for the future, you can maintain control of your life even at the very end.
Staying in Charge is a supportive guide to opening up the lines of communication and making life more fulfilling from the first day of diagnosis of a serious illness. This reassuring handbook helps you to focus on important matters such as:
* Handling a living will or a do-not-resuscitate order
* Deciding upon medical power of attorney
* Gathering support from friends and family
* And, most significantly, learning to live in the midst of dying

Based on the wisdom of many experts and caregivers in the field, Staying in Charge offers everything you need to know to make the last years of life more fruitful, less isolating, and more comfortable and peaceful-whenever and wherever the journey occurs.
""Few of us think of our own death with an open heart or a clear mind. Kaplan and Lukas courageously and compassionately demystify this unknown part of life with practical and spiritual guidance. With Staying in Charge, the secret is out: You can plan for death and, in so doing, learn how to live more fully.""
-Beth Witrogen McLeod, author of Caregiving: The Spiritual Journey of Love, Loss, and Renewal
""Staying in Charge: Practical Plans for the End of Your Life means what it says. When it comes time to manage a serious illness, we all want to be in control. There isn't a person alive who shouldn't read and absorb the counsel of this valorous-and unexpectedly cheering-work.""
-Stefan Kanfer, former editor, Time magazine author of Ball of Fire and A Summer World

Helping your family and loved ones when they need you most

""""Caregiving"" has a big heart-on a much-needed topic. A rare book of spiritual and practical wisdom.""
--Sue Bender, author of ""Plain and Simple"" and ""Everyday Sacred""

""A poignant, wise, and in-the-trenches view of caregiving that is both practical and spiritual, especially of value to midlife adults.""
--Jean Shinoda Bolen, M.D., author of ""Goddesses in Everywoman"" and ""Close to the Bone""

""Lovely. . . . Beth McLeod's experience and wisdom shine through as she shares her heartfelt journey of loss, surrender, hope, and healing.""
--David Simon, M.D. medical director, the Chopra Center for Well Being, author of ""Vital Energy"" and ""Return to Wholeness""

Sooner or later it will touch us all: A family member or loved one becomes ill or disabled, and we step in to help. This is caregiving, and in this powerful, unique book, prizewinning writer and advocate Beth Witrogen McLeod leads us through the caregiving journey with unflinching authority and compassion. Framed by the author's personal odyssey as a caregiver and richly informed by the inspiring and poignant tales of others, ""Caregiving"" explores medical and financial problems, all aspects of spirituality, and such issues as depression, stress, housing, home care, and end-of-life concerns. A rare blend of powerful storytelling and practical information, ""Caregiving"" is a revelation.

Cancer: Palliative Care examines the nature of the care and support that can be provided to those in need of palliative care and their families. This covers not only the physical treatment, such as pain management, but also the psychological well-being of patients. Health workers, clinicians, specialist nurses and medical students will find a balanced and thoughtful overview of the subject which will be of value in managing patients and helping them to come to terms with their condition.

The Textbook of Palliative Care Communication is the authoritative text on communication in palliative care, providing a compilation of international and interdisciplinary perspectives. This volume was uniquely developed by an interdisciplinary editorial team to address an array of providers including physicians, nurses, social workers, and chaplains, and it unites clinicians with academic researchers interested in the study of communication. By featuring practical conversation and curriculum tools stemming from research, this text integrates scholarship and inquiry into translatable content that others can use to improve their practice, teach skills to others, and engage in patient-centered communication. The volume begins by defining communication, explicating debatable issues in research, and highlighting specific approaches to studying communication in a palliative care context. Chapters focus on health literacy and cultural communication, patient and family communication, barriers and approaches to discussing palliative care with specific patient populations, pain, life support, advance care planning, and quality of life topics such as sexuality, spirituality, hope, and grief. Team communication in various care settings is outlined, and current research and education for healthcare professionals are summarized. Unique to this volume are chapters on conducting communication research, both qualitatively and quantitatively, to promote further research in palliative care.

Rarely heard about in our society are caregivers' thoughts and feelings about life, death, and dying and how they act on those feelings. "For the Living: Coping, Caring and Communicating with the Terminally Ill" provides an in-depth, qualitative look at the experiences of oncology healthcare professionals as they work with terminally ill patients. Through a series of recorded and edited interviews, the author explores the social and cultural dynamics that affect physicians, nurses, and social workers routinely encountering mortality and loss. What death and the prospect of dying mean to these individuals should not be taken lightly.

Aimed at health care professionals and their colleagues, ministers of religion and funeral directors, this comprehensive work of reference describes the complex procedures required when someone dies. The information should be of value to all those who are concerned with the correct handling of situations as diverse as fatal mass disasters and the rites that are associated with those who hold unfamiliar religious beliefs. The guide is in three parts: legal and technical aspects; considerations for the living, care of the dying, and death with dignity; and religious, ethnic and cultural aspects of dying and death. The author combines medico-legal facts and practical, sensitive advice.

The grief reaction is often similar for many diverse circumstances and situations. This book focuses heavily on caring for children with disabilities, chronic or terminal illness, dealing with the loss, and the recovery process.

Experiencing a parent or guardian with cancer is extremely difficult for children and adolescents with healthcare professionals and cancer support centres often lacking the specialised knowledge needed to also support these individuals. This practical guide provides a comprehensive and current understanding of the impact of parental cancer on children, young people and families. It offers a longitudinal account of the impact of cancer through the different stages of the illness and explores the impact of culture and international contexts on how families experience parental cancer. The book also crucially focuses on how to support children, young people and families by examining existing interventions. Important chapters on death and bereavement, and on self-care for practitioners also supplement the book. A valuable handbook for healthcare practitioners from a range of specialities working with patients and families affected by cancer, including clinical psychology, counselling, nursing, oncology, palliative care and social work.

When Professionals Weep speaks to the humbling and often transformational moments that clinicians experience in their careers as caregivers and healers-moments when it is often hard to separate the influence of our own emotional responses and worldviews from the patient's or family's. When ProfessionalsWeep addresses these poignant moments-when the professional's personal experiences with trauma, illness, death, and loss can subtly, often stealthily, surface and affect the helping process. This edition, like the first, both validates clinicians' experiences and also helps them process and productively address compassion fatigue, burnout, and secondary traumatic stress. New material in the second edition includes increased emphasis on the burgeoning fields of hospice and palliative care, organizational countertransference, mindfulness, and compassionate practice. It includes thought-provoking cases, self-assessments, and exercises that can be used on an individual, dyadic, or group basis. This volume is an invaluable handbook for practitioners in the fields of medicine, mental health, social work, nursing, chaplaincy, the allied health sciences, psychology, and psychiatry.

The first study guide for the CHPN (R) certification exam! This must-have study guide for nurses seeking to obtain Certified Hospice and Palliative Nurse (CHPN (R)) status provides state-of-the-art information about all aspects of this specialty. It features 300 carefully selected Q&As that offer a detailed rationale for each question, along with tips and strategies to promote exam mastery and frequently asked questions about the exam. Additional questions are arranged in chapters mirroring the exam blueprint and the number of questions for each category correlates with the exam matrix. Case-based scenarios embodied within the questions facilitate the application of knowledge in a problem-solving format. A complete practice exam is included as well. Brief topical reviews address hospice and palliative care nursing practice in all of its dimensions, including physical, spiritual, and psychosocial. The resource highlights information that forms the basis of end-of-life care, such as communication and family-centered care. Additionally, high-level skills used by hospice and palliative care nurses, such as drug and dosage conversion and the use of infusion therapy, are covered as well. Key Features: Delivers the first study guide for hospice and palliative nurses seeking CHPN (R) certification Provides concise, up-to-date knowledge on all aspects of the specialty Includes information about the exam, answers to commonly asked questions, and tips and strategies for exam mastery Includes practice questions and answers following each chapter Provides a final comprehensive practice exam that offers 300 Q&As with detailed answer rationales that mirror the exam format Presents case-based scenarios within the questions that facilitate the application of knowledge

In this volume the personal journey of why a nurse chose to leave Acute Care nursing to be involved in Palliative Care nursing connect with a broader culture of Palliative Care nursing by interviewing those who chose palliative care nursing and examine the reasons for changes in careers from acute, curing based, nursing to Palliative Caring for those in end of life nursing. The longest section of the study travels the world of Palliative nursing with participant observers. It is about the actively working nurse and includes extensive analytical discussion of an attempt to understand the sense of professional change, and the significance of beliefs for the reasoning behind vocational transformation. The second section examines the interviews, the third addresses the heart of the research question and examines nursing moving from a curing model to a caring only approach when death of the patient is inevitable. The volume ends with a letter written by the author to her sons asking them to be there when her time comes at the end of life through a life limiting illness and requests her sons and the Palliative Care professionals observe her final wishes.

"Anne's contribution to our understanding of the needs of young people with cancer has been unparalleled and without her extraordinary insights our services would be that much poorer." From the foreword by Simon Davies, CEO Teenage Cancer Trust This topical and timely text provides valuable insights into the choices and experiences of palliative and end of life care for young people with cancer and other life limiting illnesses. With a focus on palliative care provision across a range of different clinical settings, this comprehensive new resource explores care in the home, the hospice and hospital. It looks at how and where families and young people can access palliative care, and what support is offered to attain their preferred place of death. Bereavement support for families is discussed, as well as a discussion of multi-disciplinary work, interagency co-operation and resource issues. This will be essential reading for community children's nurses, specialist palliative care teams, children's hospices, school nurses, social workers and student nurses as well as families. * A comprehensive resource on end of palliative are provision for children and young adults with cancer and other life limiting illnesses * Timely and topical, tying in with the latest Department of Health palliative care strategy Better Care: Better Lives' * Written in an accessible style that does not assume either detailed medical or theoretical knowledge * Explores palliative care provision in a range of different clinical settings including the home, hospice, and hospital * Provides valuable insights into the experiences of parents, children and young people

'Death is inevitable-none of us will escape it. Ending life with a terminal illness is a slow and rather lonely process. I am interested in the question of why some nurses choose to work in the field of palliative care. I am one who willingly stepped into the role of being with patients at their most vulnerable time -when death became inevitable. My nursing history has spanned fifty years, of which the last twenty were in palliative care of terminally ill and dying patients. What was it that influenced me to move from a curing model to comfort caring only? My work is an account of how I discovered palliative care nursing after thirty years in the acute-care setting. I migrated to Australia at the age of seventeen after the violence of World War II and the death of my father in a refugee camp. It seemed that taking on nursing was the best way to settle into a new life. I was happy with general nursing but had a feeling that there was more I could contribute to my patient care. My mother's unexpected death with cancer was responsible for showing the way. She died in the hospice unit of the hospital where I was employed. Sitting by her side showed me another aspect of nursing that attracted me to a career change. I transferred to the Hospice after mother died and remained there for twenty years. Naturally I wondered why this change of direction happened.' - Susan Bardy

Palliative and end of life care are an essential component of nursing practice. This book provides students with the key information they need to deliver effective and safe end of life care for patients and their families. Crucially, it also creates opportunities for them to reflect on their own perspectives on death and dying and explore the impact of this on their practice. Key features Fully mapped to the NMC standards of proficiency for registered nurses (2018) Helps you to develop a holistic understanding of the fundamental principles and practice of palliative and end of life care Activities encourage you reflect on your own perspectives of death and dying and to consider the impact this has on your practice Case studies bring the theory to life and illustrate the real world applicability

Many hospice social workers must address spiritual issues with their clients, but do not feel competent to do so effectively. This targeted volume draws upon multidisciplinary theory and research to advance a relational model of spiritually sensitive hospice care. The book will help readers elevate their spiritual competence and foster a relationship with their clients that will enrich the experience for all involved. Spirituality and Hospice Social Work helps practitioners understand various forms of spiritual assessment for use with their clients. The book teaches practitioners to recognize a client's spiritual needs and resources, as well as signs of spiritual suffering. It also discusses religious and spiritual practices that clients may use to enhance their spiritual coping. Spirituality and Hospice Social Work stresses the need for interdisciplinary collaboration with other members of the hospice team, along with the value of maintaining professional ethical standards when addressing spiritual issues. Throughout, the importance of spiritual sensitivity and its effect upon client well-being is emphasized.

Handbook of Supportive Oncology and Palliative Care is a practical guide to providing evidence-based and value-based care to adult and pediatric cancer patients experiencing severe symptoms and stressors due to cancer diagnosis, cancer treatment, and comorbid conditions. This accessible reference provides the art and science behind the whole-person and family approach to care by delivering the best practices to relieving a cancer patient's symptoms across physical, psychosocial, and spiritual dimensions. Unlike other resources, this book covers all dimensions of palliative care but with a special emphasis on primary palliative care. Part One of the handbook provides the essential background and principles of supportive oncology and palliative care, including chapters on understanding the adult and pediatric patient and family illness experience, the roles and responsibilities of the palliative care team, and the art of the palliative care assessment interview. Part Two covers symptom management and includes ten chapters considering the major physical and psychosocial symptoms a cancer patient may face-neurologic, cardiac, respiratory, gastrointestinal, genitourinary, psychiatric, sleep and fatigue, pain, and psychosocial and spiritual distress. Part Three addresses special considerations and issues that an oncologist, physician, nurse or other healthcare provider often face in these settings, including chapters on intimacy, sexuality, and fertility issues, grief and bereavement, running a family meeting, care for the caregiver, and survivorship.Written by expert clinicians, this state-of-the-art handbook is a necessary resource for any oncologist, nurse, primary care physician, psychosocial expert, or related practitioner who endeavors to improve quality of life and provide healing to those suffering from cancer and its treatment. Key Features: Provides the binding principles of palliative care for pediatrics, adults and families from diverse cultures and spiritual beliefs Easy-to-read format makes extracting content fast and convenient for both the clinical and educational setting Guides the clinician and practitioner through the palliative care assessment process, including the appropriate questions for the palliative care interview Interdisciplinary team approach to psychosocial and spiritual care Includes access to the fully searchable downloadable eBook

Rapid advances in modern medicine have revolutionized the way we think about death and the processes of dying. Once death was defined as the absence of respiration or heartbeat; today patients hooked up to a respirator and feeding tube can be kept alive for months or years. Ivan and Melrose carefully explain the various medical processes involved in death and dying. In doing so they also confront the many ethical, moral and legal dilemmas that face doctors today, as well as the decisions that must be taken by relatives.

The Clinical Pocket Guide to Advanced Practice Palliative Nursing is a companion guide to Advanced Practice Palliative Nursing, the first text devoted to advanced practice nursing care of the seriously ill and dying. Each chapter of this pocket guide presents point-of-care guidance on palliative care issues for quick reference in daily practice. Edited by leaders in the field, this handbook provides consistency in the nursing process from assessment to management and evaluation of symptoms and various clinical situations. The Clinical Pocket Guide to Advanced Practice Palliative Nursing contains clinical pearls developed from the textbook and practical tools on pain and symptom assessment, functional status, and communication, making it an ideal resource for practicing APNs.