M J Silveira1, A DiPiero, M S Gerrity, C Feudtner. 1. University of Washington, H220 Health Sciences Center, Box 357183, Seattle, WA 98195-7183, USA. Silveira@u.washington.edu
Abstract
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 June 1999. 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 care. JAMA. 2000;284:2483-2488.
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 June 1999. 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 care. JAMA. 2000;284:2483-2488.
Entities:
Keywords:
Death and Euthanasia; Empirical Approach; Legal Approach; Professional Patient Relationship
Authors: Rebecca S Allen; Shermetra R DeLaine; William F Chaplin; Daniel C Marson; Michelle S Bourgeois; Katinka Dijkstra; Louis D Burgio Journal: Gerontologist Date: 2003-06
Authors: Nathan E Goldstein; Lewis M Cohen; Robert M Arnold; Elizabeth Goy; Stephen Arons; Linda Ganzini Journal: J Palliat Med Date: 2012-03 Impact factor: 2.947
Authors: Elissa Kozlov; Anna Cai; Jo Anne Sirey; Angela Ghesquiere; M Carrington Reid Journal: Am J Hosp Palliat Care Date: 2018-05-23 Impact factor: 2.500