We…should learn not only how to free patients from pain and distress, how to understand them and never let them down, but also to be silent, how to listen and how just to be there.1
—Cicely Saunders (1918-2005), founder of the modern hospice movement
Working as a junior doctor in palliative medicine in St Joseph's Hospice, London, England, I organized a lumbar neurolytic block for a patient who was dying of lung cancer. His main problem, however, was severe calf and foot pain due to peripheral arterial disease, pain that kept him awake every night. After the block, he was pain free and delighted to be able to be more active for a period. "Why," he asked me, "was no one able to do this before now? I've had this pain for years." And later he asked, "And why should you do it, when you are supposed to be caring for my lung cancer, and I'm going to die?"
This encounter taught me that the shorter prognosis of patients with progressive disease can change their treatment options. All clinicians, not just those of us working in palliative care, can capitalize on this perspective to help patients live well until they die and, in so doing, to help their families. Our job as clinicians is to think holistically. At that point in time, my patient's main problem was pain—and my job was to work out its cause and to look for an effective treatment, weighing the balance of likely benefits and risks.
Care at the Close of Life: Evidence and Experience represents an important milestone in the evolution of care for people with advanced disease—for which its editors and authors and JAMA (Journal of the American Medical Association) should be rightly proud. It is wonderful that JAMA had the foresight to publish a series on this topic, which, as medicine has become more technologically advanced and subspecialized, is often overlooked and, sometimes worse, avoided. And it was excellent that a team of physicians working in an established palliative care unit at the University of California, San Francisco, should take on the challenge of editing this series of articles and now helping to collate them into this book.
The authors and editors of this book are to be congratulated on its broad vision, including a wide scope of situations and conditions. Although modern palliative and hospice care began with roots in cancer care, cancer patients represent only approximately one-quarter of those who die. Increasingly, dying patients have multiple conditions as did my patient, all of which require treatment. Recent evidence has shown that symptom control, psychological issues, communication problems, and information needs are equally prevalent, not only in patients with cancer but also among patients with many other conditions, such as heart failure, chronic obstructive pulmonary disease, HIV/AIDS, neurologic conditions, or renal failure, even when such patients are receiving active treatment.2-8 In these different contexts, it is often difficult to discuss these issues and to find the right words to say.9
In this book, you will find chapters not only on cancer but also on Alzheimer disease, heart failure, liver failure, amyotrophic lateral sclerosis, HIV/AIDS, and the frailty of old age—many are common conditions and all have common concerns. The book's approach is also to be welcomed, addressing palliative and hospice care not as a sudden cutoff point that begins when cure is deemed no longer possible but as part of the trajectory of care, alongside potentially life-prolonging approaches throughout the illness. It shows how palliative care is vital in acute medical and intensive care settings and in neglected places such as prisons, as well as in the community and institutional hospice settings. Finally, the book's comprehensive approach is welcomed, considering that many important symptoms—such as pain, breathlessness, and nausea—and many crucial issues—such as communication, prognostication, preservation of dignity, emotional and spiritual concerns, support for family caregivers, grief and bereavement, and cultural and individual circumstances and wishes—are so often neglected. It also considers the needs of the clinician in providing this often demanding, as well as rewarding, care.
The book's emphasis on evidence is key. When patients have only a short time to live, providing the right treatment at first attempt is critical because often there is no second chance. Unfortunately, sometimes because of a nihilistic attitude to dying patients as a group among research funders, institutional review boards, and others, and sometimes because of a well-meaning wish to get on and act without evidence, among other reasons, research is still lacking in this field. This lack of rigorous evidence is unfortunate, because patients themselves are often highly supportive of research to help their symptoms and those of others.10,11 This book represents the state of knowledge in those aspects covered, and all chapters have been updated since the original articles were published in JAMA. Furthermore, the examples are practical, linked to case histories: Chapter 1: Initiating End-of-Life Discussions With Seriously Ill Patients explains how end-of-life discussions can be initiated; Chapter 3: Decision Making at a Time of Crisis Near the End of Life, how difficult decisions can be made; Chapter 9: Palliative Management of Fatigue at the Close of Life, how fatigue might be better managed; Chapter 11: Agitation and Delirium at the End of Life, how delirium and agitation12 might be handled—and there are many more. Thus, this book will be invaluable for front-line clinicians, and indeed all health care practitioners—as care at the close of life is a part of almost all of medicine's specialties and settings.
In London, England, we are about to open the Cicely Saunders Institute, a purpose-built Institute of Palliative Care. The first of its kind, its vision is to drive forward the evidence and practice in palliative care for all those affected by advanced disease, wherever they are cared for. Our emphasis—like this book and the principles of palliative care—is multidisciplinary, with the patient and family at the center of care and with attention to all problems, physical, emotional, social, and spiritual. Like the intent of the sections of this book, our institute strives to be highly collaborative in developing models of palliative care that work jointly with other clinicians, such as neurologists; geriatricians; renal, emergency department, and intensive care clinicians; oncologists; cardiologists; and many others. Apart from palliative care teams based in the acute care hospitals, we have a major education program, training physicians and others, at both undergraduate and postgraduate levels. The institute will conduct research to expand the evidence base to further support the chapters in this book, such as methods and simple measures to evaluate new treatments in different settings and cultures.13-16 Furthermore, in our teaching we will be glad to have a book such as this one to recommend to our students to help them to meet the next era of palliative care needs.
Across the globe societies are aging, a fact that will have a profound effect on the number and nature of patients requiring care, the settings in which care is provided, and the economic effects of such care.17-19 Increasingly, the close of life follows a period of chronic or progressive illness or frailty, often with greater difficulty predicting when death may occur.1,4,20 Paradoxically, as treatment advances prevent early death and improve survival among children with genetic or other diseases, as cancer treatment moves to fifth- and sixth-line chemotherapy agents, as people experience multiple organ transplantations, as antiretroviral medications extend life with HIV/AIDS, and as life is extended into older and older ages, palliative care will be increasingly needed. We will need to treat the symptoms of disease, to manage the comorbidities or the long-term adverse effects of curative treatments, and to support patients and their families and caregivers, who in turn will increasingly be older, with their own health and social concerns. Thus, palliative care is a necessity within medicine and all of health care, and it will need to be more closely integrated with other specialties. Already, palliative and hospice care have extended across the globe and are found in all continents of the world in locally interpreted forms; they are needed equally in resource-rich and resource-poor countries. This book will help us to respond to and meet these needs, by updating and extending the evidence base to improve the treatment and experience for patients with serious, progressive, and terminal illness, to enable individuals to live well despite the approach of the close of life, and to help support patients and their families at the time of death.
Irene J. Higginson, BMBS, PhD, FFPHM, FRCP
Department of Palliative Care, Policy and Rehabilitation
Cicely Saunders Institute