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

Latifat Apatira, BA; Elizabeth A. Boyd, PhD; Grace Malvar, BA; Leah R. Evans, MEd; John M. Luce, MD; Bernard Lo, MD; and Douglas B. White, MD, MAS
[+] Article and Author 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@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@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@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.


Ann Intern Med. 2008;149(12):861-868. doi:10.7326/0003-4819-149-12-200812160-00005
Text Size: A A A

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.

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Comments

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Hope, Truth, and Preparing for Death
Posted on December 23, 2008
Jeffrey T. Berger
Winthrop-University Hospital
Conflict of Interest: None Declared

To the Editor: Apatira et al in their study "Hope, Truth, and Preparing for Death: Perspectives of Surrogate Decision Makers" (1) provide valuable insights into surrogates' views of hope and their attitudes towards disclosure of prognostic information. It reveals that oftentimes physicians underestimate family members' ability to deal with this information, or perhaps are more uncomfortable with these discussions than are surrogates. The phenomenon of counter-transference, in which the physician subconsciously responds or reacts to actual or anticipated behaviors of the patient, may play a role in physician aversion to disclosure. Although medical education in transference/counter-transference phenomena may improve clinicians' self-awareness and the quality of their therapeutic relationships "“ including the quality and content of communication, such training is largely is neglected in clinical programs, mental health excepted (2,3).

References

1. Apatira, L. Boyd E.A, Malvar, G., et. al., Hope, Truth, and Preparing for Death: Perspectives of Surrogate Decision Makers. Ann Intern Med. 2008;149:861-868.

2. Schwartz RC, Wendling HM. Countertransference reactions toward specific client populations: a review of empirical literature. Psychol Rep. 2003;92:651-54.

3. Hayes JA, Gelso CJ. Clinical implications of research on countertransference: science informing practice. J Clin Psychol. 2001;57:1041-51.

Conflict of Interest:

None declared

Improper citations by authors
Posted on February 7, 2009
Richard Schreiber
Holy Spirit Hospital, Camp Hill, PA
Conflict of Interest: None Declared

To the Editor: Apatira, et al (1), cite a "forthcoming" work as reference number 3 in their article. An editorial writer for Annals (2) used this same source recently in his references 13 and 18. While expressions of opinion are appropriate, I object to citing as yet unpublished works as sources of fact. Oftentimes even "in print" articles and manuscripts do not contain the same material as that which is submitted. One cannot cross check an unpublished reference. There is no way to retrieve such a reference either. This leaves it in the reader's court to track down the veracity of the citation, which can be nearly impossible without exact knowledge of the authors, journal, and publication date.

I encourage the editors of Annals to discourage, or even forbid, clearly bogus references such as this.

References

1. Apatira L, Boyd EA, Malvar G, et al. Hope, Truth, and Preparing for Death: Perspectives of Surrogate Decision Makers. Ann Intern Med 2008;149:861-868.

2. Ioannidas JPA. Personalized Genetic Prediction: Too Limited, Too Expensive, or Too Soon? Ann Intern Med 2009;150:139-141.

Conflict of Interest:

None declared

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Summary for Patients

Family Members' Opinions about Sharing Bad News

The summary below is from the full report titled “Hope, Truth, and Preparing for Death: Perspectives of Surrogate Decision Makers.” It is in the 16 December 2008 issue of Annals of Internal Medicine (volume 149, pages 861-868). The report was written by L. Apatira, E.A. Boyd, G. Malvar, L.R. Evans, J.M. Luce, B. Lo, and D.B. White.

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