Hope, Truth, and Preparing for Death: Perspectives of Surrogate Decision Makers

16 December 2008 | Volume 149 Issue 12 | Pages 861-868

Background: Although many physicians worry that openly discussing a poor prognosis will cause patients and families to lose hope, surrogate decision makers' perspectives on this topic are largely unknown.

Objective: To determine surrogate decision makers' attitudes toward balancing hope and telling the truth when discussing prognosis.

Design: Prospective, mixed-methods cohort study.

Setting: 4 intensive care units at the University of California, San Francisco, Medical Center, San Francisco, California.

Participants: 179 surrogate decision makers for incapacitated patients at high risk for death.

Measurements: One-on-one, semistructured interviews with surrogates were conducted on the patients' 5th day of receiving mechanical ventilation. Constant comparative methods were used to inductively develop a framework to describe participants' responses. Validation methods included multidisciplinary analysis and member checking.

Results: Overall, 93% (166 of 179) of surrogates felt that avoiding discussions about prognosis is an unacceptable way to maintain hope. The main explanatory theme was that timely discussion of prognosis is essential to allow family members to prepare emotionally and logistically for the possibility of a patient's death. Other themes that emerged included surrogates' belief that an accurate understanding of a patient's prognosis allows them to better support the patient and each other, a moral aversion to the idea of false hope, the perception that physicians have an obligation to discuss prognosis, and the notion that some surrogates look to physicians primarily for truth and seek hope elsewhere. A few surrogates (6 of 179) felt that physicians should withhold prognostic information because of a belief that discussing death could be emotionally damaging to the family or could negatively affect the patient's health.

Limitation: The authors did not longitudinally assess whether early disclosure about prognosis predicts fewer adverse bereavement outcomes.

Conclusion: Most surrogates of critically ill patients do not view withholding prognostic information as an acceptable way to maintain hope, largely because timely discussions about prognosis help families begin to prepare emotionally, existentially, and practically for the possibility that a patient will die.

Editors' Notes Context Physicians caring for critically ill patients are often reluctant to discuss poor prognoses with family members. Contribution Family members interviewed in this study believed that physicians should not withhold information about poor prognosis as a way of preserving their hope. Caution The study did not assess psychological outcomes of family members who did and did not receive the prognostic information they said they wanted. Implication Physicians should not withhold information about poor prognosis solely to preserve family members' hope. —The Editors

 

Author and Article Information

From University of California, San Francisco, and San Francisco General Hospital, San Francisco, California.

Grant Support: By National Institutes of Health grant KL2 RR024130 from the National Center for Research Resources, a component of the National Institutes of Health Roadmap for Medical Research (Dr. White) and the University of California Student Research Fellowship (Ms. Apatira).

Potential Financial Conflicts of Interest: None disclosed.

Reproducible Research Statement: Study protocol: Available from Dr. White (e-mail, dwhite{at}medicine.ucsf.edu). Statistical code: Not available. Data set: Available to other investigators or approved individuals through written agreements with Dr. White (e-mail, dwhite{at}medicine.ucsf.edu).

Requests for Single Reprints: Douglas B. White, MD, MAS, Program in Medical Ethics, University of California, San Francisco, 521 Parnassus Avenue, Box 903, Suite C-126, San Francisco, CA 94143; e-mail, dwhite{at}medicine.ucsf.edu.

Current Author Addresses: Ms. Apatira: University of California, San Francisco, 513 Parnassus Avenue, San Francisco, CA 94143.

Ms. Boyd: University of Arizona, 1401 University Avenue, Box 210066, Tucson, AZ 85721.

Ms. Malvar and Drs. Lo and White: University of California, San Francisco, 521 Parnassus Avenue, San Francisco, CA 94143.

Ms. Evans: 88 East Brookline Street, Unit B, Boston, MA 02118.

Dr. Luce: San Francisco General Hospital, 1001 Potrero Avenue, San Francisco, CA 94110.

Author Contributions: Conception and design: L. Apatira, J.M. Luce, B. Lo, D.B. White.

Analysis and interpretation of the data: L. Apatira, E.A. Boyd, G. Malvar, L.R. Evans, B. Lo, D.B. White.

Drafting of the article: L. Apatira, E.A. Boyd, L.R. Evans, D.B. White.

Critical revision of the article for important intellectual content: L. Apatira, E.A. Boyd, L.R. Evans, J.M. Luce, B. Lo, D.B. White.

Final approval of the article: E.A. Boyd, G. Malvar, J.M. Luce, B. Lo, D.B. White.

Provision of study materials or patients: D.B. White.

Statistical expertise: D.B. White.

Obtaining of funding: D.B. White.

Administrative, technical, or logistic support: G. Malvar, L.R. Evans, B. Lo, D.B. White.

Collection and assembly of data: L. Apatira, G. Malvar, L.R. Evans, D.B. White.

Rapid Responses:

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