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

Background: Patients with chronic and terminal disease frequently do not ta lk to their physicians about end-of-life care. Interventions to improve thi s communication have generally been unsuccessful, suggesting that important barriers to this communication must exist. Objectives: To determine the barriers to and facilitators of patient-clinic ian communication about end-of-life care and to identify barriers and facil itators that are more common among those patients who are least likely to d iscuss end-of-life care: minorities and injection drug users. Methods: We conducted a prospective study of 57 patients with advanced acqu ired immunodeficiency syndrome and their primary care clinicians who were r ecruited 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 identi fied by patients and clinicians fell into 3 categories of potential interve ntions: education about end-of-life care, counseling to help address end- o f-life concerns, and health care system changes to facilitate patient-clini cian communication. Although none of the patient-identified barriers was as sociated with the occurrence of communication, 2 clinician-identified barri ers 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." No nwhite 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 cl oser" 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 patient s with acquired immunodeficiency syndrome and their clinicians suggests tha t interventions to improve communication about end-of-life care must be foc used on individual needs and must involve counseling interventions and heal th system changes in addition to education. Clinician barriers are more com mon and more strongly associated with the occurrence of end-of-life communi cation than patient barriers, suggesting that clinicians are an important t arget group for improving this communication.