Finding Our Way—Perspectives on Care at the Close of Life

Hope does not lie in a way out, but in a way through .—Robert Frost

Dying is inevitable; there is no escape, no way out. Despite an ideal vision of the end of life in which people die peacefully and comfortably at home, surrounded by supportive family and friends, many individuals die in hospitals, and many are in pain and alone.¹ Increasingly, clinicians are recognizing the difficulties that arise when caring for dying patients.² Perceiving death as a personal defeat or professional failure despite its being a natural event,^{3 - 4} clinicians caring for patients at the close of life may feel lost in a foreign land without a map. Clinicians sometimes fear that recognizing the imminence of death may remove a patient's hope. They also may have little confidence in their ability to manage severe pain, dyspnea, and other terminal symptoms. The intense emotions that patients and their families display, and the equally strong emotions that clinicians experience, can be uncomfortable and troublesome. Too frequently, clinicians feel out of place negotiating the complexities of a family's dynamics at a time when the integrity of the family is most at stake. When spiritual questions and longings arise, clinicians may feel ill-equipped to help patients in their search for meaningful answers. Even years of experience caring for dying patients does not lessen the challenge of confronting the deaths of friends and family or, ultimately, oneself.

These challenges to clinicians should not be surprising. Several studies have documented that end-of-life care is inadequately taught during medical school and residency training.^{5 - 7} In 1995, only 26% of residency programs in the United States offered a course on care at the end of life as part of the curriculum, and 15% of programs offered no formal training.⁸ The very personal reactions students have to interacting with dying patients and their families are frequently unexamined. Students have found few role models to help them handle end-of-life care, leaving them at an unfortunate remove from the richness the experience could otherwise bring.⁹ Compounding this problem is the lack of information about good palliative care in mainstream textbooks to which physicians and nurses turn for information about patient care.^{10 - 12} Furthermore, while the medical literature contains a wealth of information about palliative care, much of it is in specialty journals or textbooks unlikely to be seen by most clinicians. Journals geared to experts in the field frequently focus on important research concerns, but consequently may not always offer practical, clinically useful information. Moreover, these issues are compounded by a society constantly yearning for perpetual youth and longer life while denying and trying to avoid death.

There is hope, however. Clinicians' deficits of knowledge and patients' dissatisfactions with the quality of care have led both the medical profession and the public to devote increasing attention to palliative care. This attention has led to a series of major initiatives to improve palliative care education for both clinicians and the public, including the Education for Physicians in End-of-life Care Program of the American Medical Association, the Faculty Scholars in End-of-Life Care Program of the Department of Veterans Affairs, the Improving Residency Training in End-of-Life Care Program of the American Board of Internal Medicine, the Project on Death in America of the Soros Foundation, and the Last Acts Program of The Robert Wood Johnson Foundation.

In this issue, JAMA adds to the educational resources available to physicians, nurses, and other clinicians by launching a new bimonthly series devoted to caring for patients who are near or at the end of life. Titled "Perspectives on Care at the Close of Life," the series was developed after discussions with Steven Schroeder, MD, Rosemary Gibson, MSc, and Merry Wood of The Robert Wood Johnson Foundation and is produced with the generous support of the Foundation. This column will present a series of case-based discussions of challenging problems in caring for patients with end-stage, serious illness. The series is coordinated and edited by a team at the University of California, San Francisco, led by Stephen J. McPhee, MD, and at JAMA by section editor Margaret Winker, MD. The column is case-driven, just as the "Clinical Crossroads" series in JAMA has been.^{13 - 14}

The goal of each article is to present practical, clinically useful, authoritative recommendations to clinicians in various specialties who care for patients at the end of life. The articles will examine common, difficult-to-manage issues in end-of-life care, including treating distressing symptoms, addressing psychological issues, and meeting spiritual needs. The articles will be based on available evidence, and, where objective evidence does not exist, on clinical expertise. Cases will reflect the epidemiology, ethnicity, and disease pathways of serious illness and will be drawn from the inpatient, outpatient, and nursing home settings. Articles in this first year will trace the trajectory of end-of-life care from opening the discussion about death and dying with the patient through grief and bereavement.

The creation of each article for this column begins with identifying a topic important to care at the end of life and a discussant expert on that topic. A patient is identified who faces this issue at the end of life, and who, along with the patient's caregiver(s) and primary care physician, is willing to be interviewed and consents to share his or her perspective with an international audience. The interviews are then provided to the discussant, who weaves elements of the interviews throughout the discussion to illustrate the issues faced by the patient, family and caregivers, and the primary care physician. The discussion is peer reviewed and revised, but the interviewees' insights remain in their own voices. In the context of the patient's and caregivers' concerns, the articles will present evidence-based discussions of common issues raised by the patient's story. Like "Clinical Crossroads," "Perspectives on Care at the Close of Life" will provide follow-up of each case, completing the patient's story and ultimately presenting thoughts and reflections of family members and clinicians after the patient's death. In this issue of THE JOURNAL, the inaugural article by Quill¹⁵ explores broaching end-of-life issues with patients and their families. The article is based on interviews with an 81-year old man with advanced pulmonary fibrosis, his son, and his primary care physician. As noted by Quill, patients, their families, and their clinicians frequently collude to avoid mentioning death or dying, even when suffering is severe and prognosis is poor. To address this problem, Quill provides practical suggestions about initiating end-of-life discussions, including the who, what, when, why, and how of such interactions. The article illustrates how conducting such discussions earlier and more systematically can allow patients to make more informed choices, achieve better palliation of symptoms, and have more opportunity to work on issues of life closure.

We hope this new column will engage readers in the process of improving care for patients at the end of life. Individuals interested in contributing cases or who have suggestions regarding topics or the section overall should contact the series editors.

Death is inevitable, and while there is no way out, there is a way through. Caring for patients at the close of life is one of the greatest challenges most clinicians ever face, yet it can be one of the most appreciated and personally rewarding experiences. Listening to the rich and varied perspectives of these dying patients, their families, and their clinicians, and learning from these authors and from one another, will help meet this challenge, and help find a way through. At the close of life, clinicians can learn to attend to patients' hopes to have their symptoms controlled, their emotions understood, their relationships supported, and their spiritual concerns addressed. 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.