Decision making near life's end: a prescription for change
Abstract The publication of SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) in 1995 identified major problems with decision making near the end of life. Since that time, palliative care has developed as a specialty and end-of-life communication has evolved. However, five problems in decision-making remain today: the need to discuss underlying health status with patients; the overburdening of patients and families with too many choices; lack of appreciation of the importance of symbolism in end-of-life care; confusion between cultural beliefs and scientific facts; and difficulties with making decisions because of rapid shifts by the medical team from advocating cure to comfort. Each of these issues is described.
2009
Gillick MR
Journal Of Palliative Medicine
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2008.0240" target="_blank" rel="noreferrer">10.1089/jpm.2008.0240</a>
Health Literacy not Race Predicts End-of-Life Care Preferences
ABSTRACT Background: Several studies have reported that African Americans are more likely than whites to prefer aggressive treatments at the end of life. Objective: Since the medical information presented to subjects is frequently complex, we hypothesized that apparent differences in end-of-life preferences and decision making may be due to disparities in health literacy. A video of a patient with advanced dementia may overcome communication barriers associated with low health literacy. Design: Before and after oral survey. Participants: Subjects presenting to their primary care doctors. Methods: Subjects were asked their preferences for end-of-life care after they heard a verbal description of advanced dementia. Subjects then viewed a 2-minute video of a patient with advanced dementia and were asked again about their preferences. For the analysis, preferences were dichotomized into comfort care and aggressive care. Health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine (REALM) and subjects were divided into three literacy categories: low (0-45, sixth grade and below), marginal (46-60, seventh to eighth grade) and adequate (61-66, ninth grade and above). Unadjusted and adjusted logistic regression models were fit using stepwise algorithms to examine factors related to initial preferences before the video. Results: A total of 80 African Americans and 64 whites completed the interview. In unadjusted analyses, African Americans were more likely than whites to have preferences for aggressive care after the verbal description, odds ratio (OR) 4.8 (95% confidence interval [CI] 2.1-10.9). Subjects with low or marginal health literacy were also more likely than subjects with adequate health literacy to have preferences for aggressive care after the verbal description, OR 17.3 (95% CI 6.0-49.9) and OR 11.3 (95% CI 4.2-30.8) respectively. In adjusted analyses, health literacy (low health literacy: OR 7.1, 95% CI 2.1-24.2; marginal health literacy OR 5.1, 95% CI 1.6-16.3) but not race (OR 1.1, 95% CI 0.3-3.2) was an independent predictor of preferences after the verbal description. After watching a video of advanced dementia, there were no significant differences in the distribution of preferences by race or health literacy. Conclusions: Health literacy and not race was an independent predictor of end-of-life preferences after hearing a verbal description of advanced dementia. In addition, after viewing a video of a patient with advanced dementia there were no longer any differences in the distribution of preferences according to race and health literacy. These findings suggest that clinical practice and research relating to end-of-life preferences may need to focus on a patient education model incorporating the use of decision aids such as video to ensure informed decision-making.
2008
Volandes AE; Paasche-Orlow M; Gillick MR; Cook EF; Shaykevich S; Abbo ED; Lehmann L
Journal Of Palliative Medicine
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2007.0224" target="_blank" rel="noreferrer">10.1089/jpm.2007.0224</a>
Rethinking the role of tube feeding in patients with advanced dementia
Humans; United States; Medical Futility; Withholding Treatment; Euthanasia; Religion and Medicine; Risk Assessment; Medical; Mental Health Therapies; Professional Patient Relationship; Death and Euthanasia; decision making; Pneumonia; Psychological; Stress; Legislation; Passive; Empirical Research; Alzheimer Disease/therapy; Aspiration/prevention & control; Dementia/therapy; Enteral Nutrition/adverse effects/standards; 'Physical'; Restraint
2000
Gillick MR
The New England Journal Of Medicine
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1056/nejm200001203420312" target="_blank" rel="noreferrer">10.1056/nejm200001203420312</a>