Palliative Care

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.

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 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.

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.

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.