Evolving Practice and Theory
Dale G. Larson, PhD Daniel R. Tobin, MD
OR PATIENTS AND FAMILIES FACing advanced illness, the medical interventions and quality of life that lie ahead are largely determined through a series of conversations they have with their physicians and other health care providers. These discussions occurbetween initial diagnosis and death and include many emotionally charged topics, such as unfavorable prognoses and treatment failure,1-3 treatment choices and family responses to them,4 advance care planning,5,6 concerns about one’s ability to cope, life goals and other life-closure issues,7 anticipatory mourning,8 and the meaning of the illness and the suffering it creates.9-11 When these oftendifficult discussions are avoided or are managed poorly, the quality of remaining life for patients can be seriously jeopardized. Recent investigations of hospital care of the seriously ill highlight the need for more timely and effective end-of-life discussions. Numerous studies reveal that (1) patients are dying after prolonged hospitalization or intensive care, often in unrelieved pain; (2)preferences concerning life-sustaining treatments are not adequately discussed, documented, or adhered to; and (3) referrals to hospice and home care, which could address these shortcomings, occur late or not at all.12-14 Only about 20% of patients who die in the United States receive hospice care.15 The admission criterion of having a prognosis for survival of less than 6 months has inhibited referrals tohospice, and an increasing trend of late referrals further limits use of hospice care.16
This article examines the evolution of and need for “end-of-life conversations.” Barriers to end-of-life discussions that have been identified in patients and families, health care professionals, and health care systems can seriously interfere with the quality of remaining life for terminally illpatients. Strategies for enhancing end-of-life discussions are most productively linked to (1) physicians’ interpersonal communication skills, (2) a patientcentered model of care, (3) a focus on quality of remaining life, and (4) innovative clinical models for implementing these discussions earlier in the care process. We conclude that end-of-life conversations must become a routine, structuredintervention in health care and that advance care planning is best viewed as one component in a series of ongoing end-of-life discussions. Randomized trials are needed to examine new approaches and models for enhancing end-of-life conversations.
JAMA. 2000;284:1573-1578 www.jama.com
These disappointing results and the demands of a baby boomer generation for greater control during life’s final passageare galvanizing widespread efforts to improve end-of-life care.13,17,18 As critical components of this care, endof-life conversations are a major focus of these efforts. BARRIERS TO END-OF-LIFE CONVERSATIONS An expanding literature explores reasons that end-of-life conversations often do not occur or are conducted poorly. Barriers to end-of-life discussions have been identified in patients andfamilies, health professionals, and the structure of the medical care system.
Patients and Families
Most analyses of failed communications in end-of-life contexts attribute failures almost exclusively to the health care professional. However, recent findings emphasize the role of patients, who often manage to keep conversations away from certain topics.19-21 Patients may conceal the full extentof their pain, feelings of self-blame, anger, loss, fears
about prognosis, and other difficult experiences that could be the content of end-of-life discussions.22,23 Often patients avoid end-of-life discussions because of the stigma and embarrassment they associate with these topics.24 Shyness, confusion, fears of death and dying,25,26 and cultural prohibitions27 can also inhibit such...