Hope does not lie in a way out, but in a way through.
It is a matter of great good luck and profound joy to bring a child into the world. It is also a profound privilege to care for someone who is at the end of life—to find the way through—as life, without exception, draws to a close.
The seed of what became "Perspectives on Care at the Close of Life" grew directly from the groundbreaking clinical work of Stephen J. McPhee, MD, Steven Z. Pantilat, MD, Michael W. Rabow, MD, and Amy J. Markowitz, JD, among others, at the University of California, San Francisco (UCSF), leading to the founding of UCSF's palliative care service in 1999, among other initiatives. Then, as now, medical professionals and patients and their families were in need of practical, emotional, and spiritual guidance concerning death and dying. Clinicians were in need of an evidence-based but pragmatic resource as palliative medicine slowly began to take root in the United States and other countries.
In 2000, JAMA (Journal of the American Medical Association), with the enthusiastic commitment of Catherine D. DeAngelis, MD, MPH, editor-in-chief, Margaret A. Winker, MD, and the UCSF editorial team, launched a new section, "Perspectives on Care at the Close of Life" with support to the UCSF team from the Robert Wood Johnson Foundation (RWJF) and its then leaders, Steven Schroeder, MD, president, and Rosemary Gibson, senior program officer. The section was designed to be a case-based exploration of the trajectory of palliative care (then focused on "end-of-life care"). JAMA's initial commitment called for a set of 6 articles during 12 months. The inaugural article by Timothy E. Quill, MD (an updated version of which appears as chapter 1 of this book), discussed broaching with a patient the topic of his impending death and provided words to say to ease the conversation. The last of the original 6, by Holly Gwen Prigerson, PhD, and Selby C. Jacobs, MD, MPH (now updated as chapter 25), traced the course of grief and bereavement from the perspective of a surviving loved one. Intervening articles related to a range of clinical syndromes, disease processes, health care settings, and psychosocial issues faced by patients with life-limiting disease and their families.
Uniquely incorporating the words and wisdom of those most passionately engaged in palliative care—real patients, their families, treating clinicians, and expert author discussants— "Perspectives on Care at the Close of Life" provided scholarly and practical, clinical, psychosocial, and spiritual information on caring for patients at the close of life. Using a patient's story to introduce the clinical problem and then integrating portions of the "perspectives"—transcribed interviews with patient, family, and/or clinicians (each of whom granted their consent to be interviewed and their descriptions and interviews published)— the series' internationally prominent authors explicated typical challenges illustrated by the case, suggesting approaches to the multidimensional aspects of state-of-the-art palliative care. These approaches derived from the published evidence base and were supplemented with consensus panel recommendations and the discussants' expertise. In addition to presentation of the evidence, we asked our authors to suggest "words to say" in the hope that by including these, the reading practitioner would be confident, and moved, to say the words that are sometimes so difficult to bring forth. At other times, the advice was that there were no words, as aptly observed in the Buddhist Abbot Thich Nhat Hanh's mindful counsel, "Don't just do something, sit there…" We hope that our readers have discovered the value and insight of simply being present, bearing witness, and allowing our patients and their loved ones to do the talking. In each Perspectives article, too, we endeavored to provide a compendium of resources for the reader, culled from the Internet, adjunct print sources, community groups, and professional societies. Where possible, after publication of the original article, we published the follow-up story, originally titled "Codas" (called here "The End of the Story"), to provide readers with the next, and usually final, chapter of the patient's life.
After the initial year of funding, the RWJF renewed the UCSF team's funding for 2 additional years, enabling us to produce 12 more articles during the next 24 months. Thereafter, the California HealthCare Foundation, under the leadership of Mark Smith, MD, president, and Jan Eldred, MS, senior program officer, supported 2 more years of funding for an additional 12 articles. For the last 2 years of Perspectives, the California HealthCare Foundation joined with the Archstone Foundation, under the leadership of Joseph Prevratil, JD, president, and Elyse Salend, MSW, program officer, to cofund production of the final set of 12 articles.
Now, 10 years after its launch, and with additional support to the UCSF team from the California HealthCare Foundation, it is with great pride that we have collected the 42 articles and 23 Codas that were published from 2000 to 2008 as chapters in this book, Care at the Close of Life: Evidence and Experience. Each chapter has been updated with recent evidence from the literature. New features have been added to provide this richly textured, illustrated print and online book in the JAMAevidence series. The distinctive combination of patient, family, and clinician perspectives with best evidence and expert opinion— evidence and experience—enables Care at the Close of Life to simultaneously provide a scholarly resource, a comprehensive teaching resource, and a poignant memorial of the patients and families whose stories were the centerpiece of the series.
Care at the Close of Life: Evidence and Experience is aimed at all clinicians who care for patients facing serious progressive or terminal illness and their families. The content addresses the clinical reality that patient care cannot always be guided solely by the results of even the best population-based research but must also incorporate the clinician's experience, intuition, and compassion. Such instincts may take years to hone; Care at the Close of Life provides the instrumental tools of such care, informed by research that cuts through stereotypes and ingrained habits and truisms. We trust that it will be useful to practicing physicians; medical, nursing, and pharmacy students; interns and residents; nurses and nurse-practitioners; physician assistants; social workers; pharmacists; chaplains; psychologists; respiratory, physical, occupational, and rehabilitation therapists; and hospice workers and volunteers.
Among the book's features the reader will find
Fully revised and updated text of the original JAMA articles with new evidence and references, including the search method for each chapter's update
Additional patient, family member, and clinician transcript segments, providing further depth, insights, and intimacy to the stories
Questions and answers (either derived from JAMA's online continuing medical education questions or newly created by the authors and editors specifically for this volume)
A glossary of the acronyms, terms, and tests possibly unfamiliar to students, international audiences, and those new to the field of palliative care
Updated resources for each chapter
MEDLINE PubMed identification numbers to allow easy access to references
The online version of this text (www.jamaevidence.com) will feature fully searchable text, downloadable slide sets for instruction and learning of palliative care, interactive questions and answers linked to the relevant paragraph of the chapter from which each question was derived, an interactive glossary of terms, and hyperlinked references to MEDLINE and other resources. On the JAMAevidence Web site, this book joins the Users' Guides to the Medical Literature and The Rational Clinical Examination in providing valuable learning and teaching tools for physicians and other health care professionals that are based on best evidence and a systematic approach.
When the Perspectives section began in 2000, only one-quarter of US hospitals had a palliative care service. Board certification in hospice and palliative medicine would not be established by the American Board of Medical Specialties until 2006, with the first certifying examination taking place in 2008. There were no fellowships in palliative medicine. It was our belief that the series would have great impact both because of the stature, readership, and reputation of JAMA and because of its focus on practical management of difficult issues based on real cases in the inpatient, outpatient, and nursing home settings. We further contended that the subject matter of end-of-life and palliative care was relevant across all specialties, health care professions, and venues. A decade later, half of all US hospitals provide palliative care through a dedicated service, including almost all large hospitals and academic teaching hospitals. Palliative care is a criterion for rating hospital quality and is assessed by the US Joint Commission. Palliative care is also central to the deliberations many countries are now undertaking in attempting to improve the quality of their health care systems. Most satisfying for us, interest in the series from the general media, as well as feedback from JAMA's readership, suggested that our early confidence was not misplaced and that this textbook is needed.
As we observed in Perspectives' opening editorial, "one of the greatest gifts in confronting death is the perspective it offers about living life. Perhaps we too can achieve some perspective and understanding of how to share fully in the lives of those we love, all of whom will inevitably die, and how to live our own lives well in the time we have." We are hopeful that this book will continue to help our readers, and their patients, to find the long but ineffably rewarding way through.
University of California, San Francisco