The first volume in the "What Do I Do Now?: Palliative Care" series, Pediatric Palliative Care uses a case-based palliative care approach to cover common and important topics in the examination, investigation, and management of children with serious illness. Each chapter provides a discussion of the diagnosis, key points to remember, and selected references for further reading. The book addresses a wide range of topics, including the goals of care, symptom management, care for neonatal and adolescent populations, and the emotional, social, cultural and spiritual needs of ill children and their families. Written by authors from a variety of fields such as nursing, chaplaincy, social work, and psychology, this book is suited for pediatricians, palliative care and hospice providers, nurses, and allied health practitioners. Pediatric Palliative Care is an engaging collection of thought-provoking cases which clinicians can utilize when they encounter difficult patients. The volume is also a self-assessment tool that tests the reader's ability to answer the question, "What do I do now?"

Palliative care is an essential element of our health care system and is becoming increasingly significant amidst an aging society and organizations struggling to provide both compassionate and cost-effective care. Palliative care is also characterized by a string interdisciplinary approach. Nurses are at the center of the palliative care team across settings and populations. The seventh volume in the HPNA Palliative Nursing Manuals series, Care of the Imminently Dying provides an overview of symptom management when a patient is reaching the end of their life. This volume covers delirium and the advantages of early diagnosis, determining the presence of dyspnea, death rattle, or cough, urgent syndromes that may appear the end of life, palliative sedation, and the withdrawal of life-sustaining therapies. The content of the concise clinically focused volumes in the HPNA Palliative Nursing Manuals series provides a quick-reference in daily practice and is an ideal resource for nurses preparing for certification exams.

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care.

Over the past thirty years, the way Americans experience death has been dramatically altered. The advent of medical technology capable of sustaining life without restoring health has changed where, when, and how we die. In this revelatory study, medical anthropologist Sharon R. Kaufman examines the powerful center of those changes: the hospital, where most Americans die today. She deftly links the experiences of patients and families, the work of hospital staff, and the ramifications of institutional bureaucracy to show the invisible power of the hospital system in shaping death and our individual experience of it. In doing so, Kaufman also speaks to the ways we understand what it means to be human and to be alive.
"An act of courage and a public service."--"San Francisco Chronicle
""This beautifully synthesized and disquieting account of how hospital patients die melds disciplined description with acute analysis, incorporating the voices of doctors, nurses, social workers, and patients in a provocative analysis of the modern American quest for a 'good death.'"--"Publishers Weekly
""Kaufman exposes the bureaucratic and ethical quandaries that hover over the modern deathbed."--"Psychology Today
""Kaufman's analysis illuminates the complexity of the care of critically ill and dying patients and] the ambiguity of slogans such as 'death with dignity, ' 'quality of life, ' and 'stopping life support.' . . . Thought-provoking reading for everyone contemplating the fate of us all."--"New England"" Journal of Medicine
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The care of patients with advanced and terminal illness can be extremely rewarding but often causes professionals a considerable amount of discomfort. This is especially so when you feel under confident in your abilities to provide a high quality of symptom management and relief from distress and to communicate appropriately with patients. Patients with advanced disease present some of the most challenging ethical, physical, psychological and social issues to clinicians and indeed to society. Patients need us to be knowledgeable, skilful and understanding. The fully revised and updated new edition of Palliative Care outlines the fundamental principles and facts which will enable you to make a very real difference to your patients and their families. Information is provided in an accessible, user-friendly way and covers a wide range of physical and non-physical symptom management. Multi-professional team work is addressed, as is the role and support of families. There is also a consideration of the dilemmas and decisions that may be encountered by doctors around the end of a patient's life. This practical resource, designed to provoke contemplative professional development, and enhance learning will be essential reading for nursing and medical practitioners, and other professionals who support patients in their homes, in care homes, and in hospital.

Now in its second edition, this is the only book on occupational therapy in oncology and palliative care. It has been thoroughly updated, contains new chapters, and like the first edition will appeal to a range of allied health professionals working with patients with a life-threatening illness.

The book explores the nature of cancer and challenges faced by occupational therapists in oncology and palliative care. It discusses the range of occupational therapy intervention in symptom control, anxiety management and relaxation, and the management of breathlessness and fatigue.

The book is produced in an evidence-based, practical, workbook format with case studies. New chapters on creativity as a psychodynamic approach; outcome measures in occupational therapy in oncology and palliative care; HIV-related cancers and palliative care.

Decisions about life-sustaining treatment are often ethically challenging for patients, surrogate decision-makers, and health care professionals. Providing safe, effective, and compassionate care near the end of life is a priority for health care organizations. In times of uncertainty, crisis, or reflection, and in efforts to improve health care for seriously ill patients, guidelines can help. This is the first updated, expanded edition of The Hastings Center's 1987 Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying, which shaped the ethical and legal framework for decision-making on treatment and end-of-life care in the United States. The new edition, the product of an authoritative consensus process, incorporates 25 years of research, innovation, and developments in law and policy. It summarizes the current framework for making good decisions about treatment and care and identifies educational and organizational goals for health care systems. It covers care planning, decision-making for adults and for children, care transitions, the determination of death, and the policies and processes that support good care at the bedside. It also addresses the psychological and social dimensions of care near the end of life, with attention to effective communication with patients and loved ones and among team members. This book is written for physicians, nurses, and other clinicians in hospitals, nursing homes, home care, and hospice. It is structured for ease of reference during difficult clinical situations and includes extensive practical recommendations supported by print and online resources. This book is also essential reading for clinical ethicists, ethics committee members, health lawyers, and medical and nursing directors. As the U.S. confronts the challenges of health care reform, an aging population, increasing technological capacity to extend life, and serious cost implications, The Hastings Center Guidelines are invaluable to educators, scholars, and policymakers.

Loss and Grief: Personal Stories of Doctors and Other Healthcare Professionals is a unique collection of personal narratives that chronicle the journeys of doctors and other healthcare professionals who have been personally impacted by life-altering losses. Edited by internationally recognized practitioners of supportive care medicine and grief counseling, these are unflinching, first-person narratives of authors walking in their own shoes. The narratives reveal losses of cherished loved ones, integrity, dreams, naive views of colleagues, and the lack of institutional support for these inevitable experiences. Although the narrators are well-established leaders in their fields, serious loss brought each back to the exposed core of their most basic selves. They learned that the professional veneer was too thin to be instructive or protective. Readers might resonate with their own painful experiences and memories, and others might wonder how they will imagine their own future when these inevitable aspects of being human-loss and grief-strike them, too. In Loss and Grief, it is our hope that such openly shared feelings of isolation and suffering will humanize the loss experience, ignite prospective discussions, and illuminate opportunities for education, research and interventions to prepare us for multiple loss experiences endemic to life.

In this groundbreaking book, Dr. Fishman shows how communicating better with patients about their pain can help physicians create safer and more effective treatment strategies. Listening to Pain offers physicians a wealth of practical guidance about asking the right questions and assessing patient responses, including: -What questions to ask pain patients when they first present with pain -Using functional goals as outcome measures -Educating patients about the risks and benefits of treatment -Documenting patient consent and compliance with treatment regimens -How to manage difficult patients

The effective management of pain from cancer is a top priority for patients, carers and healthcare professionals, and has been the subject of extensive research. Approximately two-thirds of cancer patients will experience severe pain, and many of them will have more than one pain. However, because of the increasing number of available treatments for cancer, patients are surviving for longer periods, and are developing complex consequences of their cancer and its treatment, such as central and peripheral neuropathic pain syndromes. Approximately 8 - 10% of cancer pain remains unrelieved by conventional means.
Interventional cancer pain management implies the use of invasive techniques, such as neuraxial (epidural, intrathecal and intracerebroventricular) drug administration, brachial and lumbar plexus blocks, autonomic blockade, neurolytic blocks and cordotomy. It can also include TENS, acupuncture and complementary therapies. This book describes specifically the difficult pain problems that are now faced in palliative care and highlights the need for greater collaboration between the disciplines of pain medicine and palliative care. It refers to the psychological and spiritual needs of patients, and provides patient experience data on specialist techniques. The book is an invaluable resource for all healthcare professionals working in palliative care, pain management, and primary care to inform them about the range of interventional techniques available, with evidence of efficacy, side effects and management advice.

Society has become increasingly diverse; multi-cultural, multi-faith and wide ranging in family structures. The wealthier are healthier and social inequalities are more pronounced. Respecting and working with the range of 'differences' among service users, families and communities in health and social care with ill, dying and bereaved people is a neglected area in the literature. As the principles of palliative and end of life care increasingly permeate the mainstream of health and social care services, it is important that professionals are sensitive and respond to the differing needs of individuals from diverse socio-economic backgrounds, ethnicities, beliefs, abilities and sexual orientations, as well as to the different contexts and social environments in which people live and die. This book explores what underpins inequality, disadvantage and injustice in access to good end of life care. Increasingly clinicians, policy planners, and academics are concerned about inequity in service provision. Internationally, there is an increasing focus and sense of urgency both on delivering good care in all settings regardless of diagnosis, and on better meeting the needs of vulnerable and disadvantaged groups. National initiatives emphasise the importance of resolving disparities in care and harnessing empowered user voices to drive change. This newly expanded, fully revised second edition, with 11 new chapters, provides a comprehensive analysis of discrimination, difference and disadvantage in end of life care, and offers practical guidance for all who seek to support the equitable provision of good end of life care.

Ageing populations mean that palliative and end of life care for older people must assume greater priority. Indeed, there is an urgent need to improve the experiences of older people at the end of life, given that they have been identified as the 'disadvantaged dying'. To date, models of care are underpinned by the ideals of specialist palliative care which were developed to meet the needs of predominantly middle-aged and 'young old' people, and evidence suggests these may not be adequate for the older population group.
This book identifies ways forward for improving the end of life experiences of older people by taking an interdisciplinary and international approach. Providing a synergy between the currently disparate literature of gerontology and palliative care, a wide range of leading international experts contribute to discussions regarding priority areas in relation to ageing and end of life care. Some authors take a theoretical focus, others a very practical approach rooted in their clinical and research experience. The issues covered are diverse, as are the countries in which discussions are contextualised. Those working in both palliative care and gerontology will find the issues and advice discussed in this book hugely topical and of real practical value.

Informal caregivers - family members, friends, and other loved ones - are an essential, uncompensated and significantly burdened extension of the healthcare team. Rapid advances in cancer care, including new drugs and immunotherapies and more sophisticated diagnostic tools, have markedly improved the ability to medically extend lives and enhance survival. As patients are living longer, with today's shorter hospital stays and shift towards increased outpatient care, however, the demands placed on all caregivers and their needs have substantially increased. Cancer Caregivers reveals the field of Psycho-Oncology's exploration of the depth of complexities of caregiving experiences and identifies the vast expanses left to be understood. This text describes the characteristics and experiences of cancer caregivers based on their life stage, relationship to the patient, and ethnic group membership, as well as patients' disease and treatment type. It highlights the significant progress in research focused on the development and dissemination of psychosocial interventions for cancer caregivers, and includes in-depth case studies to illustrate their delivery and application. The text also explores the provision of support to caregivers in the community and the legal and ethical concerns faced by caregivers throughout the caregiving process. Cancer Caregivers offers both fundamental and practical information and is the essential resource for all healthcare professionals who work with patients and families facing cancer.

The need for renewal and support for those who care for seriously ill, dying, and bereaved people has been acknowledged from the very beginning of the hospice and palliative care movement. While often referring to the rewards and satisfactions of the work, Dame Cicely Saunders was the -first to acknowledge that helping encounters with dying patients and distressed relatives could be a source of anguish and grief for dedicated and compassionate carers. Caregiver Stress and Staff Support in Illness, Dying, and Bereavement discusses the challenge of finding a balance between the support needs of patients, families, and staff and the resources available. With contributions from practitioners and researchers from around the world, this book recognizes that palliative care today is being provided in many different settings and that there may be wide variations in the way individuals and organizations identify and manage the stressors that arise through the work. This unique collection of international perspectives on the complexities and management of caregiver stress and staff support builds on the firm foundation Mary Vachon built over thirty years ago in her studies, yet broadens the scope to include significant social, political, and cultural variations on the theme.

Respiratory disease is the second most common cause of death worldwide. Patients with advanced non-malignant disease, such as chronic obstructive pulmonary disease, have similar or even greater health care needs than those with advanced lung cancer. Uncontrolled symptoms, distress, and social isolation contribute to the poor quality of life experienced by such patients.
This book provides practical guidance to professionals who care for patients with advanced respiratory disease. It gives evidence-based advice on a wide range of topics, including management of respiratory and non-respiratory symptoms, chronic respiratory failure, and respiratory emergencies. Recognition of when a patient may be approaching the end of life can be particularly challenging in patients with advanced respiratory disease. Ways to facilitate prognostication are covered, along with the significant communication and ethical challenges that this phase of life can present.
Written by a respiratory specialist and two palliative medicine physicians, this book will be of great value to doctors, nurses, and allied healthcare professionals working in respiratory medicine and in palliative care, both in relation to everyday clinical practice as well as meeting the requirements for postgraduate exams.

Accessible and instructive,Palliative Careguides and inspires health social workers to incorporate palliative care principles into their current clinical practice. Through the lenses of environmental theory and intersectionality, rich case narratives highlight opportunities for social workers to enhance their work, advancing whole-person care in the face of serious illness. Chapters include questions to concretize ideas and demonstrate real-world application, while case narratives cover a range of settings, diagnoses, and populations. This book is a useful tool for educators, learners, and practicing social workers working with individuals and families navigating complex health care systems.

Recent years have seen increasing interest in the needs of children facing bereavement, and a corresponding increase in services to support them. This book addresses and explains the theoretical concepts and practical implications behind the idea of brief work with bereaved children and families. Flexible and accessible short term services delivered at the right time underpin the strengths of bereaved children, supporting their recovery rather than pathologizing the grief process. In this way, the book also speaks to the current interest in the concept of resilience and working with families' strengths and possibilities, rather than merely identifying their problems.
This second edition continues to be a unique book within the growing field of childhood bereavement, and the new chapters added to this edition discuss managing situations with learning disabilities, supporting very young children and emotional literacy. The book also presents cases from the service user's perspective. It looks at different approaches to intervention, such as the importance of assessment and the value of groupwork, and also covers work with children and families before a death.
Brief Interventions with Bereaved Children will appeal to practitioners, educators, and service providers managing scarce resources. The editors have more than twenty-five years experience as practitioners within the field, as service providers and educators. The book features chapters from distinguished contributors with backgrounds in healthcare, educations, social work, and the police, alongside theoretical and practice-based chapters from workers in the field of bereavement care for children.

Childen's palliative care has developed rapidly as a discipline, as health care professionals recognize that the principles of adult palliative care may not always be applicable to children at the end of life. The unique needs of dying children are particularly evident across Africa, where the scale of the problem is overwhelming, and the figures so enormous that they are barely comprehensible: over 400,000 children in Africa died from AIDS in 2003, and out of the 166,000 children a year diagnosed with cancer, 85% of these are in the developing world. Despite the enormous need, provision of children's palliative care in Africa is almost non-existent, with very few health workers trained and confident to provide care for dying children. The challenges of providing palliative care in this setting are different to those in more developed countries, contending with the shortage of physical and human resources in addition to the vast scope of the care needed.
Written by a group with wide experience of caring for dying children in Africa, this book provides practical, realistic guidance by improving access to, and delivery of, palliative care in this demanding setting. It looks at the themes common to palliative care--including communication, assessment, symptom management, psychosocial issues, ethical dilemmas, end of life care, and tips for the professional on compassion and conservation of energy--but always retains the focus on the particular needs of the health care professional in Africa. While containing some theory, the emphasis is on practical action throughout the book. Children's Palliative Care in Africa provides health care professionals working in Africa, and other resource-poor settings, with the confidence, knowledge, and capacity to improve care for the terminally ill child in constrained and demanding environments.

While many effective interventions have been developed with the potential to significantly reduce morbidity and mortality from cancer, they are of no benefit to the health of populations if they cannot be delivered. In response to this challenge, Advancing the Science of Implementation across the Cancer Continuum provides an overview of research that can improve the delivery of evidence-based interventions in cancer prevention, early detection, treatment, and survivorship. Chapters explore the field of implementation science and its application to practice, a broad synthesis of relevant research and case studies illustrating each cancer-focused topic area, and emerging issues at the intersection of research and practice in cancer. Both comprehensive and accessible, this book is an ideal resource for researchers, clinical and public health practitioners, medical and public health students, and health policymakers.

. Brings together a diversity of experience and perspectives of the use of narrative and stories, from leading international scholars and practitioners in the social sciences and palliative care
. Considers the value, use and impact of narrative approaches in the delivery of palliative and end of life care including narrative medicine, research, education, therapy, rehabilitation, patient particiption, spiritual care, family
and bereavement care
. Identifies methods of working more effectively with narrative in everyday clinical practice
. Engages with theoretical ideas and concepts from a range of disciplines
The use of narrative methods has a long history in palliative care, pioneered by Dame Cicely Saunders, founder of the modern hospice movement. Narrative and Stories in Health Care provides a vibrant, multidisciplinary examination of work with narrative and stories in contemporary health and social care, with a focus on the care of people who are ill and dying. It animates the academic literature with provocative 'real-world' examples from international contributors, including palliative care service users and those working in the social and human sciences, medicine, theology, and the creative arts.
Narrative and Stories in Health Care addresses and discusses key questions: What is a narrative? What is a story? What are some of the main methods and models that can be used and for what purposes? What practical and ethical dilemmas can the methods entail in work with illness, death and dying? As well as highlighting the power of stories to create new possibilities, the book also acknowledges the conceptual, methodological and ethical problems and challenges inherent in narrative work.
As the hospice and palliative care movement evolves to meet the challenges of 21st century health care, this fascinating book highlights how narratives and stories can be attended to in ways that are productive, ethical, and caring."

The essence of nursing care continually exposes nurses to suffering. Although they bear witness to the suffering of others, their own suffering is less frequently exposed. This slim volume attempts to give voice to the suffering that nurses witness in patients, families, colleagues, and themselves. By making this suffering visible, the authors wish to honor it and to learn from it.
The audience includes nurses in all phases of training and practice - from students to educators to clinicians - in the wide array of settings and specialties in which nurses care for patients. The book offers nurses' colleagues in other professions - social workers, psychologists, chaplains, ethicists, and physicians - a rare window onto what it means to practice nursing.
Drs. Ferrell and Coyle are also the editors of Textbook of Palliative Nursing, 2nd ed (Oxford, 2006). Independently, they have worked more than 50 years in oncology nursing, caring for patients and working to improve the quality of care that patients receive.

Predicting survival and other outcomes is increasingly being recognized as an important skill for palliative care doctors and nurses, oncologists, and other healthcare professionals who treat patients with advanced cancer. Accurate prognosis is essential if we are to offer quality of care and 'a good death', as well as to aid decision-making. There is much prognostic information available that is scattered throughout the palliative care and oncological literature but this is the first time it has been gathered systematically in one place.
Glare and Christakis, leaders in the field of prognosis, bring together a team of international contributors from across the fields of palliative care and oncology. This comprehensive but practical guide begins with the principles of prognostication, including formulating the prediction and then communicating it. Topics such as statistical issues, evidence-based medicine, and the ethics of prognostication are also covered. The second section addresses prognostication in 15 specific cancer sites once they have reached the advanced stage, following a standard template for consistency and easy access to the key information. The third section deals with prognostication in patients with a variety of common clinical conditions at the end of life, such as bowel obstruction, hypercalcaemia, and brain metastases. In addition, survival curves are provided within each chapter, palliative care conditions are examined for the first time, and a summary table of long and short term prognosis ensures this book remains practical.

Pain in later life is both quite common and disabling, and it differs significantly in terms of its aetiology, diagnosis and treatment from pain in the general adult population. Older people often have complicated co-morbidities, have a high prevalence of mental health problems (e.g. anxiety, cognitive impairment, and depression) and respond to treatment in different ways compared to younger people. Their specific needs are rarely discussed specifically in more general texts.
Part of the "Oxford Pain Management Library," this pocketbook will serve as a concise companion for healthcare professionals who manage older patients suffering with pain. Concise chapters will summarize up-to-date reserach literature in a practical style that will have direct relevance to busy clinicians. Introductory chapters will include the epidemiology of pain in older people as well as the proper assessment of older patients with pain conditions. Later chapters will focus on specific painful conditions common in the elderly, including arthritis and rheumatism, osteoporosis, abdominal pain, and cancer.
The book will appeal to a wide variety of health care professionals in both primary care and secondary care services such as geriatric medicine, rheumatology, orthopedics, surgery, pain management and palliative medicine. The book will also be of relevance to nurses, physiotherapists, occupational therapists, clinical psychologists, pharmacists and other health care providers.

Around one in three people in the western world will develop cancer at some stage in life and complementary therapies are increasingly being used alongside orthodox treatments as part of the 'integrative' approach to cancer care. Enhancing Cancer Care is a practical, evidence-based guide to complementary cancer therapies, also described as natural or holistic therapies. More and more patients are turning to these therapies as there is now considerable evidence that they can help with symptom-control and quality-of-life, and that some may also extend survival. Complementary therapies can also provide the patient with a greater sense of control regarding the management of their illness. From the editor of Integrated Cancer Care, this new title provides detailed commentary on a broad range of complementary therapies and features practical advice on how to implement therapies to enhance current practice. The first part of the book deals with the general principles behind complementary therapies and the factors driving their growing popularity, the challenges of evaluating their benefits and unwanted effects, and experience of using them in oncology units, hospices, the private sector and primary care. The second part includes chapters on specific interventions, including complementary therapies such as acupuncture and aromatherapy massage; lifestyle modifications through diet and exercise; creative therapies using art and music; and psychological and spiritual support for individuals and groups. These chapters provide descriptions of the therapies, a summary of the evidence for their benefits in cancer care, and illustrative case histories. The emphasis throughout this book is on enhancing practice; that is, using the therapies alongside conventional medicine, rather than as alternatives to it.

Caring for terminally ill patients and their families is challenging. Patients with life limiting illness require the skills of many professionals but also the support of their community. While most clinicians are comfortable in assessing a broad range of physical problems, it is often the psychosocial issues that prove the most complex. These issues range from psychosocial assessment to the treatment and care of patients with life limiting illnesses. Evaluating emotional, social and spiritual needs, in particular, requires excellent teamwork. This fully-updated and expanded new edition takes a comprehensive look at current practice and provision of psychosocial support as applied to a range of palliative care patients. A number of important areas are covered including community approaches of psychosocial care, neonatal palliative care, the provision of psychosocial care to families, the role of volunteers in supporting palliative care professionals, and the needs of the frail elderly, marginalised patients, and those with dementia. Including multiple case study examples, this highly practical text examines current literature and evidence to demonstrate the best research-based practice in psychosocial care. It is an essential resource for professionals working within hospitals and communities in the fields of medicine, nursing, social work, chaplaincy, counselling, primary care, and mental health.