Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians

Abstract

Background: Patients with chronic and terminal disease frequently do not talk to their physicians about end-of-life care. Interventions to improve this communication have generally been unsuccessful, suggesting that important barriers to this communication must exist.

Objectives: To determine the barriers to and facilitators of patient-clinician communication about end-of-life care and to identify barriers and facilitators that are more common among those patients who are least likely to discuss end-of-life care: minorities and injection drug users.

Methods: We conducted a prospective study of 57 patients with advanced acquired immunodeficiency syndrome and their primary care clinicians who were recruited from university and private clinics. Barriers to and facilitators of end-of-life communication were identified from a prior qualitative study and assessed for frequency and importance and for an association with the occurrence and quality of end-of-life communication.

Results: Clinicians identified more barriers than patients. Barriers identified by patients and clinicians fell into 3 categories of potential interventions: education about end-of-life care, counseling to help address end-of-life concerns, and health care system changes to facilitate patient-clinician communication. Although none of the patient-identified barriers was associated with the occurrence of communication, 2 clinician-identified barriers were associated with less communication: "the patient has not been very sick yet" and "the patient isn't ready to talk about end-of-life care." Nonwhite patients were more likely to identify the following 2 barriers than white patients: "I feel that if I talk about death, it could bring death closer" and "I don't like to talk about the care I want if I get very sick."

Conclusions: The diversity of barriers and facilitators relevant to patients with acquired immunodeficiency syndrome and their clinicians suggests that interventions to improve communication about end-of-life care must be focused on individual needs and must involve counseling interventions and health system changes in addition to education. Clinician barriers are more common and more strongly associated with the occurrence of end-of-life communication than patient barriers, suggesting that clinicians are an important target group for improving this communication.