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Systematic Review: The Effect on Surrogates of Making Treatment Decisions for Others

David Wendler, PhD; and Annette Rid, MD
[+] Article, Author, and Disclosure Information

From the National Institutes of Health, Bethesda, Maryland, and the Institute of Biomedical Ethics, University of Zurich, Zurich, Switzerland.

Disclaimer: The opinions expressed are the authors' own. They do not represent any position or policy of the National Institutes of Health, Public Health Service, or Department of Health and Human Services.

Acknowledgment: The authors thank Karen Smith, MLS, for her assistance with the literature search and Marion Danis, MD; Deena Levine MD; Steve Pearson, MD; and Emily Largent, BSN, for their helpful comments on early drafts of the manuscript.

Grant Support: By the National Institutes of Health Clinical Center. Dr. Rid is supported by a grant from the Swiss National Science Foundation (PA00B–117505/2).

Potential Conflicts of Interest: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M10-2297.

Requests for Single Reprints: David Wendler, PhD, National Institutes of Health, Building 10, Room 1C118, Bethesda, MD 20892; e-mail, dwendler@nih.gov.

Current Author Addresses: Dr. Wendler: National Institutes of Health, Building 10, Room 1C118, Bethesda, MD 20892

Dr. Rid: University of Zurich, Institute of Biomedical Ethics, Pestalozzistrasse 24, 8032 Zurich, Switzerland.

Author Contributions: Conception and design: D. Wendler, A. Rid.

Analysis and interpretation of the data: D. Wendler, A. Rid.

Drafting of the article: D. Wendler.

Critical revision of the article for important intellectual content: D. Wendler, A. Rid.

Final approval of the article: D. Wendler, A. Rid.

Obtaining of funding: D. Wendler.

Administrative, technical, or logistic support: D. Wendler, A. Rid.

Collection and assembly of data: D. Wendler, A. Rid.

Ann Intern Med. 2011;154(5):336-346. doi:10.7326/0003-4819-154-5-201103010-00008
Text Size: A A A

Background: Clinical practice relies on surrogates to make or help to make treatment decisions for incapacitated adults; however, the effect of this practice on surrogates has not been evaluated.

Purpose: To assess the effect on surrogates of making treatment decisions for adults who cannot make their own decisions.

Data Sources: Empirical studies published in English and listed in MEDLINE, EMBASE, CINAHL, BIOETHICSLINE, PsycINFO, or Scopus before 1 July 2010.

Study Selection: Eligible studies provided quantitative or qualitative empirical data, by evaluating surrogates, regarding the effect on surrogates of making treatment decisions for an incapacitated adult.

Data Extraction: Information on study location, number and type of surrogates, timing of data collection, type of decisions, patient setting, methods, main findings, and limitations.

Data Synthesis: 40 studies, 29 using qualitative and 11 using quantitative methods, provided data on 2854 surrogates, more than one half of whom were family members of the patient. Most surrogates were surveyed several months to years after making treatment decisions, the majority of which were end-of-life decisions. The quantitative studies found that at least one third of surrogates experienced a negative emotional burden as the result of making treatment decisions. The qualitative studies reported that many or most surrogates experienced negative emotional burden. The negative effects on surrogates were often substantial and typically lasted months or, in some cases, years. The most common negative effects cited by surrogates were stress, guilt over the decisions they made, and doubt regarding whether they had made the right decisions. Nine of the 40 studies also reported beneficial effects on a few surrogates, the most common of which were supporting the patient and feeling a sense of satisfaction. Knowing which treatment is consistent with the patient's preferences was frequently cited as reducing the negative effect on surrogates.

Limitations: Thirty-two of the 40 articles reported data collected in the United States. Because the study populations were relatively homogenous, it is unclear whether the findings apply to other groups. In some cases, the effect of making treatment decisions could not be isolated from that of other stressors, such as grief or prognostic uncertainty. Nine of the studies had a response rate less than 50%, and 9 did not report a response rate. Many of the studies had a substantial interval between the treatment decisions and data collection.

Conclusion: Making treatment decisions has a negative emotional effect on at least one third of surrogates, which is often substantial and typically lasts months (or sometimes years). Future research should evaluate ways to reduce this burden, including methods to identify which treatment options are consistent with the patient's preferences.

Primary Funding Source: National Institutes of Health.


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Appendix Figure 1.
Summary of literature search and selection.
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Appendix Figure 2.
Effect of decision making on surrogates (qualitative studies).

Included themes were mentioned in at least 4 qualitative studies.

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Appendix Figure 3.
Factors reported to be associated with a positive surrogate experience (qualitative studies).

Included themes were mentioned in at least 4 qualitative studies. AD = advance directive; Comm = communication; Prog = prognosis; SDM = shares decision making; Subst = substitute; Surr = surrogate.

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Appendix Figure 4.
Factors reported to be associated with a negative surrogate experience.

Included themes were mentioned in at least 4 qualitative studies. AD = advance directive; BI = best interests; Pref = preferences; Prog = prognosis; Surr = surrogate.

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Submit a Comment/Letter
Mitigating Surrogate Burden
Posted on March 4, 2011
Jeffrey T. Berger
Winthrop University Hospital
Conflict of Interest: None Declared

Wendler and Rid, in their important systemic review, highlight an under-appreciated phenomenon in clinical care. Surrogates operate under significant stress which affects the quality of their decisions as well as the quality of their relationships with their ill relatives and other family members.

Many families that clinicians label as "difficult" merely have their capacity to cope overwhelmed by these stressors. An important strategy for addressing these challenging families and their decisions that often seem unreasonable is to explicitly recognize and validate surrogates' emotional burdens. Often, this step alone is sufficient to mitigate incapacitating loads, and is a good step towards enriching the therapeutic relationship and for introducing other supports, such as palliative care, pastoral care, and social work.

Conflict of Interest:

None declared

Re:Mitigating Surrogate Burden
Posted on March 10, 2011
Jerry L. Goddard
SIU School of Medicine
Conflict of Interest: None Declared

The authors have discussed an issue that I have observed numerous times in the past 40 years which is at times compounded by the use hospitalists and referral to tertiary care centers. First, physicians often forget to use the term "we": "WE are going to work together to achieve the best possible outcome" or "We will look at the best possible treatments." This communicates that the patient, the family and doctor are a team, and the surrogate does not have to work through the problem alone. Second the clinician should not be afraid to state that he/she has made a clinical decision that the current medical treatment is only prolonging a dying process and that it is the PHYSICIAN'S decision that treatment should be stopped, etc. The PHYSICIAN should then ask the surrogate to discuss the PHYSICIAN'S decision to stop treatment with other family members and then meet for a decision making session with all concerned.

Conflict of Interest:

None declared

Physician Role in End of Life Decisions
Posted on March 20, 2011
Ramon S. Dunkin
Conflict of Interest: None Declared

This paper by Wendler and Rid and the January 11, 2011 "Frontline" documentary "Facing Death" on PBS prompted the following comments on the physician's role in medical decision making.

The Annals paper and the references cited (7-10) as to how decisions were made by surrogates mentioned discussions with the health care staff but did not indicate what specific information was provided by thephysicians. The documentary "Facing Death" pre-sented several end of life situations in which family members alone or with input from the patient were asked to decide about further therapy after discussion of the prognosis and treatment options with the health care staff. In none of the scenarios was there a recommendation by a physician as to what he felt was the best course of action based on his knowledge of the patient's illness, probable prognosis, any advanced directive, and the expressed feelings of family members.

After practicing Internal Medicine and Pulmonary and Critical Care Medicine for forty-five years it was evident to me that patients are best served when a trusted physician makes her best recommendation for treatment,or withdrawing treatment,after explaining all of the options and consequences. This maintains the decision-maker's autonomy to accept or reject the physician's recommendation. This, in my experience, removed much of the stress placed on patients and surrogates when asked to make decisions that are difficult enough for the physician.

Advanced directives, when available, are very helpful in making recommendations but the decision as to when to (or not to)institute those directives can be very challenging, even with the aid of an ethics committee.

Even in the exteme situation where life support is discontinued due to "futility" in spite of surro- gates initial decision to the contrary, family members later usually accepted the decision with equanimity.

Conflict of Interest:

None declared

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