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Barriers and Facilitators to End-of-Life Care Communication for Patients with COPD^*

^* From Division of Pulmonary and Critical Care Medicine (Dr. Knauft, Engelberg, and Curtis, and Ms. Nielsen), Department of Medicine, School of Medicine; and Program in Social and Behavioral Sciences (Dr. Patrick), Department of Health Services, School of Public Health, University of Washington, Seattle, WA.

Correspondence to: J. Randall Curtis, MD, MPH, Division of Pulmonary and Critical Care Medicine, Harborview Medical Center, Box 359762, 325 Ninth Ave, Seattle, WA 98104-2499; e-mail: jrc{at}u.washington.edu

Objective: Patients with COPD frequently do not discuss end-of-life care with physicians; therefore, we sought to identify the barriers and facilitators to this communication as a first step to overcoming barriers and capitalizing on facilitators.

Design: Fifteen barriers and 11 facilitators to patient-physician communication about end-of-life care were generated from focus groups of patients with COPD. We subsequently conducted a cross-sectional study of 115 patients with oxygen-dependent COPD and their physicians to identify the common barriers and facilitators and examine the association of these barriers and facilitators with communication about end-of-life care.

Participants and setting: Patients with oxygen-dependent COPD were recruited from clinics at a university, county, and Veterans Affairs teaching hospital, and an oxygen delivery company. We also recruited the physician identified by each patient as the doctor primarily responsible for their lung disease.

Measurements and results: Patients were interviewed by trained research interviewers. Physician data collection was completed by mail survey. Participation rates were 40% for patients and 86% for physicians. Only 32% of patients reported having a discussion about end-of-life care with their physician. Two of 15 barriers and 8 of 11 facilitators were endorsed by > 50% of patients. The most commonly endorsed barriers were "I’d rather concentrate on staying alive," and "I’m not sure which doctor will be taking care of me." Two barriers were significantly associated with lack of communication, as follows: "I don’t know what kind of care I want," and "I’m not sure which doctor will be taking care of me." The greater the number of barriers endorsed by patients, the less likely they were to have discussed end-of-life care with physicians (p < 0.01), suggesting the validity of these barriers. Conversely, the more facilitators, the more likely patients were to report having had end-of-life discussions with their physicians (p < 0.001).

Conclusion: Although patients endorsed many barriers and facilitators, few barriers were endorsed by most patients. Barriers and facilitators associated with communication are targets for interventions to improve end-of-life care, but such interventions will likely need to address the specific barriers relevant to individual patient-physician pairs.

Key Words: barriers • COPD • death • dying • end-of-life care • palliative care • physician-patient communication

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