Browse

Advance Care Planning is an essential part of the new NHS National Programme on End-of-Life Care, aiming to improve the chances of ‘a good death’ by discussing and planning how this might be managed. This book helps readers explore a wide range of issues and practicalities in providing Advance Care Planning (ACP) for their patients nearing the end of life. This book takes a comprehensive look at the subject of ACP; frames the purpose, process, and outcomes; and includes contributions from experts from around the world.

Advance Care Planning (ACP) is an essential part of quality end of life care in the UK and in most developed countries, enabling more people to live well and die well as they would choose. In the context of the ageing population, with increasing possibilities for medical interventions, ACP is an crucial consideration, with important implications for the individual person and their family and for our wider population. This book takes a comprehensive look at the subject, helps readers explore a wide range of issues and practicalities in providing ACP; frames the purpose, process, and outcomes; provides updates on national and international research, policy, and practice and includes contributions from experts from around the world. Death will affect us all; it is the one certainty in life. Yet the subject of death remains something of a taboo, we rarely discuss what our preferences would be at end of life, what we would want, where we would want to be cared for, not even with loved ones.

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 of the text within the growing field of childhood bereavement contains new chapters that discuss managing situations with learning disability, 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 group work, and also covers work with children and families before a death. The editors have more than twenty-five years experience as practitioners within the field, as service providers and educators. The book features chapters from contributors with backgrounds in healthcare, education, social work, and the police, alongside theoretical and practice-based chapters from workers in the field of bereavement care for children.

Even for the most experienced healthcare professional, managing the last few days of life can be difficult. This 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 that 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. The book also includes chapters on symptom control, ethical issues, communication skills, and spiritual care.

Even for the most experienced healthcare professional, managing the last few days of life can be difficult. This book provides guidelines for the care of the dying based on the Liverpool 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 that 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 includes chapters on symptom control, ethical issues, communication skills, and spiritual care, which underpin the use of the LCP.

In this book, the author uses his wide range of clinical experience caring for severely ill patients and their families to illustrate the challenges and potential of end-of-life care. Section One utilizes the near-death experiences of two patients to explore values underlying medical humanism, and then presents the case of “Diane” to explore the fundamental clinical commitments of partnership and non-abandonment. Section Two explores, illustrates, and provides practical guidance for clinicians, patients, and families about critical communication issues including delivering bad news, discussing palliative care, and exploring the wish to die. In Section Three, difficult ethical and policy challenges inherent in hospice work, including the rule of double effect, terminal sedation, and physician-assisted suicide, are explored using a mix of real cases and an analysis of underlying clinical, ethical, and policy issues. In the final chapter, the author discusses the tragic death of his brother, which occurred as this book was being completed, and how his family made the most emotionally challenging decisions of their lives. The author exposes readers to an internally consistent and practical way of thinking by simultaneously embracing the potential of palliative care, and also acknowledging that it has limitations. His philosophy of offering forthright discussions with patient and family, mutual decision making, ensuring medical and palliative care expertise, and committing to see the dying process through to the patient's death, is vividly illustrated.

Volunteers have a long history of supporting the development and delivery of hospice and palliative care in most countries throughout the world. As hospice and palliative care services anticipate significant increasing and changing demands, it is recognised that volunteers have a vital role to play in supporting the future delivery of services. However, as society changes so too does volunteering. This multi-author text explores the complex phenomenon of hospice and palliative care volunteering from an international perspective and considers the influence on volunteering of different cultures and constructs. The book also explores the likely impact of changes in hospice and palliative care on volunteers and considers how and why volunteering itself is changing and the subsequent implications for managers, organizations, and policy makers. This book does not attempt to offer solutions to the many challenges ahead, but rather poses questions that may help to reflect on new possibilities and opportunities.

Children's palliative care has developed rapidly as a discipline, as health-care professionals recognise 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, 84% 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 guidance on 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. Whilst containing some theory, the emphasis is on practical action throughout.

Most chronically and terminally ill patients are cared for in their own homes by family and friends, rather than in hospitals or hospices. These carers are an invaluable free resource and there is an increasing amount of research into their role and the experiences of caring for the terminally ill, patients with cancer, and patients with other chronic diseases. This book provides a critique of the theoretical concept of caring, carers, and caregivers. The material is based on empirical evidence from recent studies of adults with acquired chronic illnesses, including terminal illness. The empirical data within the book has been gathered from the perspective of those providing personal, domestic, or emotional care to others already known to them by virtue of kinship, co-habitation, or friendship, rather than carers organised on a professional or voluntary basis. This new evidence is used to make suggestions about possible ways forward within health and social care practice.

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, 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, editorials, 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 organisational 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 book is a 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.

Cicely Saunders founded St Christopher’s Hospice in London in 1967 as a centre for teaching, research, and care. Its influence quickly spread around the world. Cicely Saunders — A Life and Legacy shows how she played a crucial role in shaping a new discourse of care at the end of life. From the nihilism of ‘there is nothing more we can do’, medicine and healthcare gradually adopted a more purposeful approach to care in the face of advanced disease and at the end of life. This came to be known as palliative care. This biography links for the first time the ideas and practice of Cicely Saunders to the spreading global interest in hospice and palliative care. It explores her deep reflection on the nature of suffering at the end of life, the possibilities of a more informed approach to the medical management of pain and other symptoms, and above all the importance of remaining focussed on the personal and spiritual concerns of the individual patient as death approaches. It is a story of a remarkable personal and professional life and of a seismic shift in twentieth-century medical history.

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 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’. Saunders' 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 presents a selection of her vast correspondence, together with the author's commentary. The letters of Cicely Saunders tell a remarkable story of vision, determination, and creativity. They should be read by anyone interested in how we die in the modern world.

This book provides a unique view of patients, families, and their caregivers striving together to maintain comfort and hope in the face of incurable illness. The narratives weave together emotions, physical symptoms, spiritual concerns, and the stresses of family life, as well as the professional and personal challenges of providing hospice and palliative care. Based on a vast amount of participant observation and in-depth interviews, the book moves far beyond dry technical manuals for symptom control and tired clichés about death with dignity, to depict the sights, sounds, tastes, and smells of the daily in patients' homes and the palliative care unit. It captures the breathtaking diversity of people's aspirations and ideals as they face death, and the views of the professionals who care for them. Anger and fear, tenderness and reconciliation, jealousy and love, social support and falling through the cracks, unexpected courage and unshakable faith—all of these are part of facing death in late twentieth-century North America, and this book brings them to life in a portrait of the processes of giving and receiving palliative care.

This book gives voice and face to a vulnerable and disempowered population whose stories often remain untold: the urban dying poor. Drawing on complex issues surrounding poverty, class, and race, the book illuminates the unique sufferings that often remain unknown and hidden within a culture of broad invisibility. The book demonstrates how a complex array of factors, such as mistrust of physicians, regrettable indignities in care, and inadequate communication among providers, patients, and families, shape the experience of the dying poor in the inner city. This book challenges readers to look at reality in a different way. Demystifying stereotypes that surround poverty, the book illuminates how faith, remarkable optimism, and an unassailable spirit provide strength and courage to the dying poor. The book serves as a rallying call for compassionate individuals everywhere to understand and respond to the needs of the especially vulnerable, yet inspiring, people who comprise the world of the inner city dying poor.

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 emphasize the importance of resolving disparities in care and harnessing empowered user voices to drive change.

Maintaining dignity for patients approaching death is a core principle of palliative care. Turning that principle into ways of guiding care at the end-of-life, however, can be a complicated and daunting task. Dr. Harvey Max Chochinov, an international leader in palliative care, has conducted groundbreaking research on the issue of dignity and palliative care. His findings are beginning to change the way people think about and approach care for the terminally ill. Dignity Therapy is a novel, individualized, brief psychological intervention, designed specifically to address many of the psychological, existential and spiritual challenges that patients and their families face as they grapple with the reality of life drawing to a close. This therapeutic approach, based on years of Chochinov and his team's research, has been tested on patients with advanced illnesses in various countries worldwide. Many palliative care programs are starting to incorporate Dignity Therapy into the range of services offered dying patients and their families. This enthusiastic uptake of Dignity Therapy speaks to some universal aspects of being human; to be alive means to experience being vulnerable and being mortal. Dignity Therapy offers a way of preserving meaning, purpose and hope for patients approaching death. The benefits of this approach for patients and families have been demonstrated in various studies in diverse settings. Dignity Therapy: Final Words for Final Days introduces readers to this pioneering and innovative work, illustrating how Dignity Therapy can change end-of-life experience for those about to die and those who will grieve their passing.

This book shows how much better fitted advanced concepts of primary care medicine are to America's health-care needs. It offers insights into how primary care physicians can be better trained to meet the needs of their patients, both well and sick, and to keep these patients as the focus of their practice. Modern medical training, the book notes, arose at a time when medical science was in ascendancy. Thus the ideals of science — objectivity, rationality — became the ideals of medicine, and disease — the target of most medical research — became the logical focus of medical practice. When clinicians treat a patient with pneumonia, they are apt to be thinking about pneumonia in general — which is how they learn about the disease — rather than this person's pneumonia. This objective, rational approach has its value, but when it dominates a physician's approach to medicine, it can create problems. Most important, this book argues that primary care medicine should become a central focus of America's health care system, not merely a cost-saving measure as envisioned by managed care organizations. Indeed, the book shows that the primary care physician can fulfill a unique role in the medical community, and a vital role in society in general. It shows that primary care medicine is not a retreat from scientific medicine, but the natural next step for medicine to take in the coming century.

Dying at the Margins: Reflections on Justice and Healing for Inner-City Poor gives voice to a most vulnerable and disempowered population—the urban dying poor—and connects them to the voices of leaders in end-of-life care. Chapters written by these experts in the field discuss the issues that challenge patients and their loved ones, as well as offering insights into how to improve the quality of their lives. In an illuminating and timely follow-up to Dancing with Broken Bones, all discussions revolve around the actual experiences of the patients previously documented, encouraging a greater understanding about the needs of the dying poor, advocating for them, and developing best practices in caring. Demystifying stereotypes that surround poverty, Moller illuminates how faith, remarkable optimism, and an unassailable spirit provide strength and courage to those who live and die at the margins. As with his previous book, Dying at the Margins serves as a rallying call for not only end-of-life professionals, but compassionate individuals everywhere, to understand and respond to the needs of the especially vulnerable, yet inspiring, people who comprise the world of the inner-city dying poor.

Dyspnoea (breathlessness) is an uncomfortable awareness of breathing that occurs in approximately 30–75% of terminal cancer patients. It is one of the most distressing symptoms for both patients and family members and can seriously impact on quality of life. Typically, dyspnoea is associated with congestive heart failure, end-stage chronic obstructive pulmonary disease, or lung cancer. This book provides palliative care doctors and specialist nurses with practical guidelines to help manage and treat patients with breathlessness. It includes the science behind the symptom in an attempt to explain the pathology and physiology of this complex condition. The book has been organized to address generalized aspects of breathlessness in advanced illness and more specific aetiologies and managements relevant to particular underlying diseases. It summarizes the epidemiology and the pathophysiology of breathlessness, measurement, research approaches, rehabilitation and exercise, clinical approaches that can be taken at the bedside, pharmacological and non-pharmacological approaches, and surgical interventions. The care of patients with dyspnoea requires input from a variety of disciplines such as palliative care, physiotherapy, respiratory medicine, and nursing, and this is reflected in the multidisciplinary list of contributors.

This book is a sequel to When treatment fails: How Medicine Cares for Dying Children (Oxford University Press, 2006). Its purpose was to systematically document persuasive issues that arise in pediatric end-of-life palliative care: when to withhold or withdraw curative treatments, how to manage pain and suffering, how to communicate bad news to patients and families, how the staff copes with patients dying and how they are able to move on, how best to train staff in pediatric end-of-life care, and how the staff understands the reactions of dying patients and their families. Similar in form (i.e., narrative analyses) and purpose, this book addresses these issues. It systematically analyzes and documents the challenges of pediatric end-of-life palliative care but does so from the special perspectives provided by narratives from children at the end of their lives and their families. It captures the frustrating and diverse voices among dying children and their parents. Together, these two books significantly advance ways to improve standards of care and promote transparency in ethically complicated deliberations concerning end-of-life care for children. Their findings will be used to develop pediatric palliative care policies and guidelines, teaching programs, advocacy resources, treatment protocols, and innovative service delivery models of national significance that improve the quality-of- life for children who are approaching the end of life and their families.