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

This enlightening volume provides first-hand perspectives and ethnographic research on communication at the end of life, a topic that has gone largely understudied in communication literature. Author Elissa Foster' s own experiences as a volunteer hospice caregiver form the basis of the book. "Communicating at the End of Life" recounts the stories of Foster and six other volunteers and their communicative experiences with dying patients, using communication theory and research findings to identify insights on the relationships they form throughout the process. What unfolds is a scholarly examination of a subject that is significant to every individual at some point in the life process.
Organized chronologically to follow the course of Foster' s involvement with hospice and the phases of the study, the book opens with Part 1, providing background and contextual information to help readers understand subsequent stories about communication between volunteers and patients. Part 2 of the volume emphasizes the adjustments required by the volunteers as they entered the world of hospice and the worlds of the patients. Part 3 underscores the importance of improvisation and finding balance within the role of volunteer-- in particular how to be fully present for patients as well as their family members. The volume concludes with Part 4, which addresses how volunteers coped with the death of their patients and what they learned from the experience of volunteering.
"Communicating at the End of Life "is appropriate for scholars and advanced students studying personal relationships, health communication, gerontology, interpersonal communication, lifespancommunication, and communication & aging. Its unique content offers precious and meaningful insights on the communication processes at a critical point in the life process.

Cicely Saunders is universally acclaimed as a pioneer of modern hospice care. Trained initially in nursing and social work, she qualified in medicine in 1958 and subsequently dedicated the whole of her professional life to improving the care of the dying and bereaved people. Founding St. Christopher's Hospice in London in 1967, she encouraged a radical new approach to end of life care combining attention to physical, social, emotional and spiritual problems, brilliantly captured in her concept of "total pain." Her ideas about clinical care, education and research have been hugely influential, leading to numerous prizes and awards in recognition of her humanitarian achievements. This book includes a selection of Cicely Saunders' most important writings throughout a period of over forty years.
Full articles, chapters, editiorials, reviews, and commentaries include important clinical themes relating to the care of dying people such as pain and symptom management, issues of communication and truth telling, and the needs of particular patient groups, such as those with cancer and other diseases. The book includes pieces that reflect on the wider development of the palliative care field and on policy and organizational issues. Some of the papers take up the theme of spiritual care at the end of life, as well as the question of euthanasia, raising in turn issues of a wider theological and philosophical nature.
The articles are written for a multi-disciplinary audience and will be of enormous interest to many professionals now working in palliative care. The collection will become a key work of reference for those interested in the evolution of hospice and palliative care and will serveas an important sourcebook of many currently hard to obtain publications by the acknowledged founder of the modern hospice movement. This book will also stand as a remarkable testimony to the personal contribution of Cicely Saunders and the influence she has had upon the modern field of palliative and end of life care.

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

Palliative Care Consultations in Haemato-oncology is the first book in a new international, multi-contributed series aimed at providing practical, clinical guidance on how to deal with difficult symptoms related to specific cancer sites. Patients with haematological malignancy often undergo the most rigorous treatments, usually requiring long inpatient stays at tertiary referral centres far removed from friends, families and everyday life. The treatment for some malignancies is palliative, although aggressive, from diagnosis and there can be a number of difficult symptom-control problems all of which are covered in this book. This volume draws on the expertise of the haematologist who is vital if the patient is to have optimal care and provides practical advice in an easily accessible form so that the book can be read and referred to on the ward, or before a domiciliary visit.

Specialists in palliative care and oncology settings, working in the acute sector and in hospices, will find this book invaluable. It will also appeal to consultants as well as specialist registrars, clinical nurse specialists and nurse practitioners in palliative care, oncology and haematology.

ABOUT THE PALLIATIVE CARE CONSULTATIONS SERIES: This series is aimed at those individuals working in a acute hospital cancer centre and/or tertiary referral centre. They are designed to give the busy clinician advice on clinical problems which may be relatively rarely encountered or very common but which are often very difficult to manage. The volumes are site specific and every volume encompasses a review of the current oncological or haemato-oncological management of advanced disease with symptom control advice. The aim of these volumes is to give excellent medical symptom control advice, but also to put the medical advice in the context of palliative care. The books will also be of use and interest to other professions, with the focus on giving first-rate medical help.

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

Most people with far-advanced illness wish to be cared for at home for as long as possible. The challenge of providing good palliative care at home is therefore of major importance for family doctors, nurses and all those committed to maintaining the highest possible quality of life for the dying person. As modern specialist palliative care has raised both standards of care and also public expectations of family doctors and community nurses, this book helps to place specialist care in context. As palliative care is a major responsibility for teams providing palliative care at home, this book provides a definitive guide on how to provide effective care for people with far-advanced disease. Written by two palliative medicine specialists, both of whom have been family doctors, this book deals with all the physical, emotional, spiritual and social problems likely to be encountered by family doctors and community nurses caring for a patient and relatives at home. It deals in detail with emergencies, communications, ethical issues and emphasises throughout the importance of team work. 'It provides a wealth of information and advice on all aspects of palliative care at home'. Elaine Coleridge Smith Information Exchange, No. 13, 1995

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

Nell M. came to her therapist with an unusual problem. She was disappointed that her metastatic breast cancer was not progressing as predicted. She had hoped breast cancer would lead to death, preventing her from witnessing her spouse's mental deterioration from Alzheimer's disease. This is how Nell's story began. As Nell became increasingly aware of her death on the near horizon, the therapy sessions with the author were recorded and transcribed. The Nell Dialogues: Conversation in Mortal Time consists of twelve of Nell's illness narratives that explore the challenges of managing the physical and emotional demands of cancer, relationship issues with family and health care professionals, and disturbing, anxiety provoking thoughts as well as the mourning that accompanies the end of life. These dialogues trace Nell's acceptance of, and struggle with, the practical obstacles to achieving a good death. They also offer a window on the world of patients and their caregivers facing a life-threatening illness together. A commentary by the author accompanies each dialogue, giving the reader insights on the therapist's thinking during the counselling sessions and offering context and lessons learned from them. Nell's vibrant voice is a beacon throughout the narratives, sometimes sad, yet always hopeful for a good death. Her ability to navigate the difficult territory of mortal time and dying informs the reader about how death might be approached with grace and dignity.

At the end of life, our comfort lies mainly in relationships. In this book, Daniel Miller, one of the world's leading anthropologists, examines the social worlds of people suffering from terminal or long-term illness. Threading together a series of personal stories, based on interviews conducted with patients of an English hospice, Miller draws out the implications of these narratives for our understanding of community, friendship, and kinship, but also loneliness and isolation. This is a book about people's lives, not their deaths: about the hospice patients rather than the hospice. It focuses on the comfort given by friends, carers and relatives through both face-to-face relations and, increasingly, online communication. Miller asks whether the loneliness and isolation he uncovers is the result of a decline of English patterns of socialising, or their continuation. This moving and deeply humane book combines warmth and sharp observation with anthropological insight and practical suggestions for the use of media by the hospice. It will be of interest not only to students and scholars of anthropology, sociology, social policy and media and cultural studies, but also to healthcare professionals and, indeed, to anyone who would like to know more about the role of relationships in the final stage of our lives.

Within the last decade music therapists have developed their work with people who have life-threatening illnesses and with those who are dying. This book presents some of that work from music therapists working in different approaches, in different countries, showing how valuable the inclusion of music therapy in palliative care has already proved to be. It is important for the dying, or those with terminal illness, that approaches are used which integrate the physical, psychological, social and spiritual dimensions of their being. The contributors to this book emphasize the importance of working not only with the patient but with the ward situation, friends and family members. By offering patients the chance to be creative they become something other than patients - they become expressive beings, and there is an intimacy in music therapy that is important for those who are suffering. Many of the contributors write in their own personal voice, providing a particular insight which will be valuable not only to other music therapists seeking to enrich their own ways of working, but to all those involved in caring for the sick and the dying. Contributors describe their work with both children and adults living with HIV/AIDS, cancer and other chronic degenerative diseases.

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

This insightful study examines the deeply personal and heart-wrenching tensions among financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions. America's health care system was built on the principle that life should be prolonged whenever possible, regardless of the costs. This commitment has often meant that patients spend their last days suffering from heroic interventions that extend their life by only weeks or months. Increasingly, this approach to end-of-life care is coming under scrutiny, from a moral as well as a financial perspective. Sociologist Roi Livne documents the rise and effectiveness of hospice and palliative care, and growing acceptance of the idea that a life consumed by suffering may not be worth living. Values at the End of Life combines an in-depth historical analysis with an extensive study conducted in three hospitals, where Livne observed terminally ill patients, their families, and caregivers negotiating treatment. Livne describes the ambivalent, conflicted moments when people articulate and act on their moral intuitions about dying. Interviews with medical staff allowed him to isolate the strategies clinicians use to help families understand their options. As Livne discovered, clinicians are advancing the idea that invasive, expensive hospital procedures often compound a patient's suffering. Affluent, educated families were more readily persuaded by this moral calculus than those of less means. Once defiant of death-or even in denial-many American families and professionals in the health care system are beginning to embrace the notion that less treatment in the end may be better treatment.

Hospice chaplains have traditionally played a unique part in palliative care, providing human compassion and support to help ease life's final chapter. This book thoughtfully tackles the question at the heart of modern hospice chaplaincy: do chaplains have a distinctive role in an increasingly secular society? A comprehensive look at why and how this work needs to be done, each chapter will be a rich resource for hospice chaplains and anyone working within a hospice multi-disciplinary team. Taking the form of reflections by chaplains and other professionals, they examine the tension between sacred and secular space, explore how spiritual care works in a changing society, and look at what voice a chaplain has within the hospice team. Essential reading for chaplains, this insightful book reflects on the important work undertaken by hospice chaplaincies and explains why they continue to be a vital resource for end-of-life care.

Nearly half of people at the end of life will receive hospice care, but few psychologists, nurses, physicians, chaplains, and hospice workers have been trained specifically to recognize and address the psychological, social, and emotional issues that may arise in patients who are dying. Patients in the midst of advanced terminal illness may experience a variety of distressing emotions, and may feel anxious, frightened, regretful, or desperate. This guide was created specifically to guide helping professionals of all kinds through the process of working through patients' psychological issues to allow them peace and comfort in their final moments.

The Helping Professional's Guide to End-of-Life Care clarifies the spiritual and emotional care that patients need and presents an evidence-based approach integrating cognitive behavioral therapy (CBT), transpersonal psychotherapy, hypnosis, mindfulness, and guided imagery to help patients manage emotional distress at the end of life. Through case conceptualizations and detailed treatment planning guidance, readers learn to formulate comprehensive assessment and treatment plans for patients and gain skills that will help them manage the emotional intensity of this work. This secular, professional treatment model can be applied to patients of any religious or spiritual background. The book also addresses integrating the patient's therapeutic team with the medical team, addressing the emotional needs of friends and family of the dying, crisis intervention for suicidal patients, working with clients on psychotropic medications, and how helping professionals can manage their own emotions to become more effective clinicians.

The first resource on end-of-life care for healthcare practitioners who work with the terminally ill and their families, "Living with Dying" begins with the narratives of five healthcare professionals, who, when faced with overwhelming personal losses altered their clinical practices and philosophies. The book provides ways to ensure a respectful death for individuals, families, groups, and communities and is organized around theoretical issues in loss, grief, and bereavement and around clinical practice with individuals, families, and groups.

"Living with Dying" addresses practice with people who have specific illnesses such as AIDS, bone marrow disease, and cancer and pays special attention to patients who have been stigmatized by culture, ability, sexual orientation, age, race, or homelessness. The book includes content on trauma and developmental issues for children, adults, and the aging who are dying, and it addresses legal, ethical, spiritual, cultural, and social class issues as core factors in the assessment of and work with the dying. It explores interdisciplinary teamwork, supervision, and the organizational and financing contexts in which dying occurs.

Current research in end-of-life care, ways to provide leadership in the field, and a call for compassion, insight, and respect for the dying makes this an indispensable resource for social workers, healthcare educators, administrators, consultants, advocates, and practitioners who work with the dying and their families.

The syringe driver is a simple and cost-effective method of delivering a continuous subcutaneous infusion (CSCI). A CSCI provides a safe and effective way of drug administration and can be used to maintain symptom control in patients who are no longer able to take oral medication. There have been several developments in this field since the third edition of this highly successful book. The text in this edition has been completely revised, incorporating new treatment options and an extensive list of new compatibility data. This book serves as a valuable reference source, providing comprehensive review of syringe driver use and administration of drugs by CSCI. The first chapter provides an overview of syringe drivers and CSCIs, including a useful array of frequently asked questions. The second chapter provides information about the chemistry of drug incompatibility and degradation. The third chapter comprises revised and referenced information relating to most drugs likely to be administered by CSCI using a syringe driver. The fourth chapter discusses the control of specific symptoms that are often encountered when CSCIs are required. The fifth and final chapter contains an extensive, referenced list of compatibility and stability data relating to drug combinations administered by CSCI.

The first volume in the HPNA Palliative Nursing Series, Structure and Processes of Care provides an overview of palliative nursing care, reviews National Consensus Project guidelines, and offers tools for initiating and maintaining palliative care programs. The content of the concise, clinically-focused volumes in the HPNA series prepares nurses for certification exams as well as quick-reference in daily practice. Plentiful tables, figures, and practical tools such as assessment instruments, pharmacology tables, and patient teaching points make these volumes useful resources for nurses.

'Warm, wise and practical' Cressida Cowell, MBE An invaluable reference for parents of sick or hospitalised children by an experienced and eminent psychologist. To many parents, it is hard to imagine a more upsetting reality than one where their child is hospitalised, severely sick, or terminally ill. In When Your Child is Sick, psychologist Joanna Breyer distils decades of experience working with sick children and their families into a comprehensive guide for navigating the uncharted and frightening terrain. She provides expert advice to guide them through the hospital setting, at-home care, and long-term outcomes. Breyer's actionable techniques and direct advice will help parents feel more in-control of a circumstance that has upended their life. She alerts parents to key personnel in the hospital, gives dialogue prompts to help parents ask for the help they need, addresses the needs of their other children at home, offers advice on how to best utilise friends and family who want to help, includes stories from other families who have been there, and teaches coping techniques to help both parents and children weather the stress of prolonged illness and even death. When Your Child is Sick is a valuable guide to managing the myriad practical and emotional complications of an impossible situation.

In the 21st century, people in the developed world are living longer. They hope they will have a healthy longer life and then die relatively quickly and peacefully. But frequently that does not happen. While people are living healthy a little longer, they tend to live sick for a lot longer. And at the end of being sick before dying, they and their families are frequently faced with daunting decisions about whether to continue life prolonging medical treatments or whether to find meaningful and forthright ways to die more easily and quickly. In this context, some people are searching for more and better options to hasten death. They may be experiencing unacceptable suffering in the present or may fear it in the near future. But they do not know the full range of options legally available to them. Voluntary stopping eating and drinking (VSED), though relatively unknown and poorly understood, is a widely available option for hastening death. VSED is legally permitted in places where medical assistance in dying (MAID) is not. And unlike U.S. jurisdictions where MAID is legally permitted, VSED is not limited to terminal illness or to those with current decision-making capacity. VSED is a compassionate option that respects patient choice. Despite its strongly misleading image of starvation, death by VSED is typically peaceful and meaningful when accompanied by adequate clinician and/or caregiver support. Moreover, the practice is not limited to avoiding unbearable suffering, but may also be used by those who are determined to avoid living with unacceptable deterioration such as severe dementia. But VSED is "not for everyone." This volume provides a realistic, appropriately critical, yet supportive assessment of the practice. Eight illustrative, previously unpublished real cases are included, receiving pragmatic analysis in each chapter. The volume's integrated, multi-professional, multi-disciplinary character makes it useful for a wide range of readers: patients considering present or future end-of-life options and their families, clinicians of all kinds, ethicists, lawyers, and institutional administrators. Appendices include recommended elements of an advance directive for stopping eating and drinking in one's future if and when decision making capacity is lost, and what to record as cause of death on the death certificates of those who hasten death by VSED.

Even for the most experienced healthcare professional, managing the last few days of life can be difficult. This unique book provides guidelines for the care of the dying based on the Liverpool Integrated Care Pathway for the Dying Patient (LCP). Developed at a hospice, the information can be disseminated and adapted to fit different settings such as hospitals and nursing homes.
The LCP is a multiprofessional document that incorporates evidence-based practice and appropriate guidelines related to care of the dying. It provides a template which describes the process of care which is generally delivered in a clinical situation and incorporates the expected outcome of care delivery. The LCP replaces all other documentation in this phase of care. Care pathways can provide a potentially powerful aid to professionals involved in palliative care. Basic principles of treatment are translated into daily practice, including bedside documentation systems, policies and procedures, standards of practice, continuing education and quality improvement programmes. This book also includes chapters on symptom control, ethical issues, communication skills, and spiritual care written by experts in the field which underpin the use of the LCP.
Care of the Dying Second Edition will prove invaluable to all healthcare professionals involved in the care of the dying patient, organisations and Trusts who want to develop demonstrable measures and outcomes of care.

Supporting the Child and the Family in Paediatric Palliative Care provides a comprehensive overview of good practice in caring for terminally-ill children, young people and their families. Drawing from extensive personal experiences of working in paediatric palliative care, the author provides guidance on issues including symptom management and pain relief; cultural, religious and spiritual aspects of care; and the role of education for life-limited children. Addressing the importance of individual needs, the book looks at emotional, social and cognitive support at different stages of the illness, how parents and professionals can respond to children's own questions about death, and the impact of life-limiting illness on the whole family - including grandparents and siblings. The material offers helpful suggestions on how to support families in making informed choices during distressing periods, such as where their child will die and how to prepare for the funeral. This book is a practical and invaluable tool for nurses, paediatricians, hospice care staff, bereavement counsellors and all those caring for life-limited children.