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.

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.

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.

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.

The past 30 years has seen a huge expansion in the provision of palliative care services. Because palliative medicine is a multidisciplinary specialty – combining the expertise of oncologists, anaesthetists, nurses, and many other therapeutic groups – the effectiveness of such treatment can be very difficult to measure. Additionally, research involving terminally ill patients and their carers can also present a number of practical and ethical problems. In spite of this, current health policy demands evidence of the effectiveness and value for money of health service interventions at all levels of complexity, including the service level. This book provides an introduction to the theory and practice of the evaluation of palliative care services. It examines the methodological issues involved in the evaluation of palliative care and outlines a practical approach that is readily applicable to many other health care interventions. In particular, research issues involving terminally ill patients and their carers are analysed and discussed, and approaches suggested for future work.