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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.

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 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.

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.

Despite the fact that most palliative care educators are involved in teaching, there is little literature devoted to education specifically within palliative care. This book bridges that gap, giving a wide-ranging, global view of palliative care education. It offers theoretical and practical insights, along with specific suggestions for developing knowledge and skills for teaching. It also contains extensive accounts of important contextual matters which influence the range and quality of palliative care education, including: interprofessional learning; continuing professional development; evaluation; and educational leadership. The development of palliative care as a clinical speciality is increasingly conducted at an international level, and a special feature of this book is the inclusion of chapters reviewing palliative care education in each continent. This encourages the sharing of knowledge across diverse healthcare systems and cultures. There is also an acknowledgement of the multi-professional team involved in palliative care, as education and training are looked at from the perspectives of doctors, nurses, and allied health professionals. The book is split into three distinct parts: Part 1 sets the scene for existing palliative care education, both in the UK and internationally. Part 2 focuses on the theory underpinning each aspect of teaching, learning and assessment, and then examines the practicalities of delivering these in the clinical setting. Part 3 explores ways of building and nurturing a culture of learning in palliative care, whether as an individual or as an organization.

A book for nurses, doctors and all who provide end of life care, this volume guides readers through the ethical complexities of such care, including current policy initiatives, and encourages debate and discussion on their controversial aspects. Dived into two parts, the book introduces and explains clinical decision making-processes about which there is broad consensus, in line with guidance documents issued by the WHO, BMA, GMC, and similar bodies. The changing political and social context where ‘patient choice’ has become a central idea, and the broadened scope of patients' best interests, have added to the complexity of decision-making in end of life care. The authors discuss issues widely encountered by GPs, nurses, and hospital clinicians. These include patient choice, consent, life-prolonging treatment, and symptom relief including sedation. Part two explores the more controversial current end of life care initiatives, such as advance care planning, preferred place of care and death, euthanasia and assisted suicide, extended ideas of ‘best interests’, and the view that there are therapeutic duties to the relatives. Throughout their discussion the authors draw attention to loose ends and contradictions in some of the proposals. Examining the current policy of consumerist choice, they reject its place in the health service, proposing a realistic, fair, humane and widely adoptable system of end of life care. An appendix on ethical theories and terms is available online.

In our society, the overwhelming majority of people die in later life. They typically die slowly of chronic diseases, with multiple co-existing problems over long periods of time. They spend the majority of their final years at home, but many will die in hospitals or care homes. This book explores the possibilities for improving the care of older people dying in residential care and nursing homes. It argues that there are aspects of palliative care that, given the right circumstances, are transferable to dying people in settings that are not domestic or hospice based. The book describes what happens in nursing and residential care homes when a resident is dying, how carers cope, and the practical, health, and emotional challenges that carers face on top of their day-to-day work. Based on research from both the UK and US, the book shows how the situation can be improved.

This book is a 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. The book provides 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.