Patients' knowledge of options at the end of life - Ignorance in the face of death

Context Effectiveness of legislation promoting advance directives and legal izing physician-assisted suicide depends on patients' understanding their l egal options about end-of-life care. However, outpatients' understanding of their legal options at the end of life has not been studied. Objectives To estimate the percentage of outpatients who are informed about 4 areas relevant to end-of-life care: refusal and withdrawal of lifesaving treatments, physician-assisted suicide, active euthanasia, and double effe ct; and to determine whether authoring advance directives, experiencing ill ness, acting as a proxy for health care decisions, and caring for an ill lo ved one are associated with better knowledge in end-of-life care. Design Cross-sectional survey. Setting and Participants One thousand consecutive English-speaking, adult p atients attending 1 university-based internal medicine clinic and 3 communi ty-based, university-affiliated, mixed internal medicine and family practic e clinics in Oregon during May and June 1999. Main Outcome Measures Percentage of correct responses in the 4 topic areas and total knowledge score, adjusted for demographic (eg, age, race, educati onal level, income level, marital status) and experiential (eg, health, pro xy decision making, advance directives, and death of a loved one) factors. Results Of the 1000 patients invited to participate, 728 (73 %) consented a nd completed the questionnaire and were included in the analysis. A total o f 69% of respondents answered correctly regarding refusal of treatment, 46% for withdrawal of treatment, 23% for assisted suicide, 32% for active euth anasia, and 41% for double effect. Sixty-two percent of respondents did not distinguish between assisted suicide and euthanasia. After adjustment for other covariates, better knowledge was significantly associated with white race (odds ratio [OR], 2.3; 95% confidence interval [CI], 1.3-4.2), having at least a college degree (OR, 3.0; 95% CI, 1.4-6.7), and having been a pro xy for health care decisions (OR, 1.8, 95% CI, 1.2-2.6). Personal experienc e with illness (OR, 1.0; 95% CI, 0.6-1.5), death or illness of a loved one (OR, 1.6; 95% CI; 1.0-2.7), and authoring an advance directive (OR,1,3; 95% CI, 0.9-2.0) were not associated with better knowledge. Conclusions A significant proportion of outpatients at university-affiliate d clinics in Oregon appear to misunderstand options in end-of-life care. Ou r results suggest that greater public knowledge about end-of-life care is n eeded, and advance care planning must be preceded by education about option s in end-of-life care.