Context Effectiveness of legislation promoting advance directives and legalizing
physician-assisted suicide depends on patients' understanding their legal
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 effect; and to determine
whether authoring advance directives, experiencing illness, acting as a proxy
for health care decisions, and caring for an ill loved one are associated
with better knowledge in end-of-life care.
Design Cross-sectional survey.
Setting and Participants One thousand consecutive English-speaking, adult patients attending
1 university-based internal medicine clinic and 3 community-based, university-affiliated,
mixed internal medicine and family practice clinics in Oregon during May and
Main Outcome Measures Percentage of correct responses in the 4 topic areas and total knowledge
score, adjusted for demographic (eg, age, race, educational level, income
level, marital status) and experiential (eg, health, proxy decision making,
advance directives, and death of a loved one) factors.
Results Of the 1000 patients invited to participate, 728 (73%) consented and
completed the questionnaire and were included in the analysis. A total of
69% of respondents answered correctly regarding refusal of treatment, 46%
for withdrawal of treatment, 23% for assisted suicide, 32% for active euthanasia,
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 proxy for health care
decisions (OR, 1.8; 95% CI, 1.2-2.6). Personal experience 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-affiliated clinics
in Oregon appear to misunderstand options in end-of-life care. Our results
suggest that greater public knowledge about end-of-life care is needed, and
advance care planning must be preceded by education about options in end-of-life