Patients' knowledge of options at the end of life: ignorance in the face of death.
BACKGROUND
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.


OBJECTIVE
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.


METHODS
Cross-sectional survey.


METHODS
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 June 1999.


METHODS
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 care. JAMA. 2000;284:2483-2488.
Silveira
M J
MJ
University of Washington, H220 Health Sciences Center, Box 357183, Seattle, WA 98195-7183, USA. Silveira@u.washington.edu
DiPiero
A
A
Gerrity
M S
MS
Feudtner
C
C
D000328:Adult; D016223:Advance Directives; D000368:Aged; D001293:Attitude to Death; D032882:Comprehension; D003430:Cross-Sectional Studies; D005065:Euthanasia; D033101:Euthanasia, Active, Voluntary; D005066:Euthanasia, Passive; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009922:Oregon; D010045:Outpatients; D017236:Suicide, Assisted; D013727:Terminal Care; D019452:Terminally Ill / Q000523:psychology; D016312:Treatment Refusal