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

Maria J. Silveira, Albert DiPiero, Martha S. Gerrity, Chris Feudtner

Research output: Contribution to journalArticle

157 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)2483-2488
Number of pages6
JournalJournal of the American Medical Association
Volume284
Issue number19
StatePublished - Nov 15 2000

Fingerprint

Terminal Care
Assisted Suicide
Advance Directives
Odds Ratio
Confidence Intervals
Proxy
Active Euthanasia
Outpatients
Internal Medicine
Treatment Refusal
Advance Care Planning
Delivery of Health Care
Euthanasia
Family Practice
Marital Status
Legislation
Decision Making
Cross-Sectional Studies
Demography
Outcome Assessment (Health Care)

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Patients' knowledge of options at the end of life : Ignorance in the face of death. / Silveira, Maria J.; DiPiero, Albert; Gerrity, Martha S.; Feudtner, Chris.

In: Journal of the American Medical Association, Vol. 284, No. 19, 15.11.2000, p. 2483-2488.

Research output: Contribution to journalArticle

Silveira, Maria J. ; DiPiero, Albert ; Gerrity, Martha S. ; Feudtner, Chris. / Patients' knowledge of options at the end of life : Ignorance in the face of death. In: Journal of the American Medical Association. 2000 ; Vol. 284, No. 19. pp. 2483-2488.
@article{6ef3d37e5a4140508a2e5577391f5daa,
title = "Patients' knowledge of options at the end of life: Ignorance in the face of death",
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.",
author = "Silveira, {Maria J.} and Albert DiPiero and Gerrity, {Martha S.} and Chris Feudtner",
year = "2000",
month = "11",
day = "15",
language = "English (US)",
volume = "284",
pages = "2483--2488",
journal = "JAMA - Journal of the American Medical Association",
issn = "0002-9955",
publisher = "American Medical Association",
number = "19",

}

TY - JOUR

T1 - Patients' knowledge of options at the end of life

T2 - Ignorance in the face of death

AU - Silveira, Maria J.

AU - DiPiero, Albert

AU - Gerrity, Martha S.

AU - Feudtner, Chris

PY - 2000/11/15

Y1 - 2000/11/15

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=0034669685&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=0034669685&partnerID=8YFLogxK

M3 - Article

C2 - 11074778

AN - SCOPUS:0034669685

VL - 284

SP - 2483

EP - 2488

JO - JAMA - Journal of the American Medical Association

JF - JAMA - Journal of the American Medical Association

SN - 0002-9955

IS - 19

ER -