We found substantial variability in the role surrogates prefer in making value-sensitive life support decisions for incapacitated, critically ill patients, with a slight majority preferring to have final control of the decision. Surrogates with low levels of trust in the treating physicians were more likely to prefer to retain final authority for value-laden life support decisions.
Our results suggest that surrogates may prefer more decisional control for value-laden decisions in ICUs than previously believed. For example, Heyland and colleagues found that only 22% of subjects wished to maintain final authority over decisions in ICUs (8
). Similarly, Anderson and colleagues reported that only 25% of surrogates preferred to be the person making the final medical decisions (9
). Azoulay and colleagues found that 53% of surrogates did not wish any involvement in decisions to forego life support in ICUs (22
). What may explain the different findings? Both Heyland and colleagues and Anderson and coworkers elicited surrogates' perspectives on decision making in general, combining both end-of-life decisions and technical medical decisions into their questions (8
). The data we report herein suggest that the type of decision influences surrogates' preferred role, with surrogates preferring more control over value-laden decisions compared with more technical medical decisions. Azoulay and colleagues studied a qualitatively different type of decision: whether to stop futile treatment when there was “no hope of recovery” (22
). We studied decisions about what constitutes a state worse than death, which are qualitatively more value-laden and difficult than the decision to stop a clearly futile treatment. It is also possible that Azoulay and colleagues' findings from France are due to differences in prevailing cultural norms between Europe and the United States regarding medical decision making (23
). Our findings are in accord with a recent qualitative study by White and colleagues, which reported wide variability in surrogates' beliefs about what role physicians should play in value-sensitive life support decisions (25
The results of the current study provide empirical support for the conceptual distinction between physicians sharing their opinion with surrogates and physicians having final authority over value-laden decisions. Specifically, although very few surrogates wished to cede all decisional authority to physicians, 90% wished to receive the physician's opinion about whether to forego life-sustaining treatment. Understanding the conceptual distinction between “who deliberates” and “who decides” may help physicians better match their practice to the preferences of individual surrogates.
We also found that surrogates who had less trust in the treating physicians preferred more control over the final decision regarding withdrawal of life support. Although this finding will not surprise clinicians who have experienced how loss of trust can undermine collaborative decision making, it is the first empirical evidence of this association among surrogate decision makers. These cross-sectional data cannot establish a causal association; however, they raise the possibility that surrogates' role preferences may be dynamic rather than static and constructed by their experiences with the health care team. Future prospective studies are needed to establish whether such a causal relationship exists. If so, it would strengthen the rationale for research on how to forge trusting relationships with families in ICUs. We speculate that a starting point may be for physicians to conceptualize trust building as an important goal in their interactions with surrogates and to structure their communication to accomplish this.
Our data suggest that physicians need to develop two skills that are not currently part of the core competencies of critical care clinicians. First, the variability in surrogates' role preferences suggest that physicians should develop the ability to elicit surrogates' preferred role in decision making. Existing evidence suggests that physician rarely inquire about surrogates' preferred role in decision making (26
). Second, physicians should develop comfort with having different levels of authority for decisions based on the surrogates' preferences and the clinical context.
We wish to highlight our opinion that surrogates' preferred level of control over value-laden decisions is one among several considerations that are ethically relevant to the question of what role they should ultimately play in life support decisions. At least four other considerations are ethically relevant, including considerations of distributive justice, physicians' obligations to act for the good of their patients and to respect patients' previously stated treatment preferences, and cultural norms around medical decision making. Occasionally, one or more of these considerations may require physicians to assume more control over value-laden decisions than surrogates prefer. This step should not be taken without justification, however, because recent evidence suggest that surrogates are at higher risk of adverse psychiatric outcomes from the ICU experience when there is discordance between their preferred and actual role in decision making (4
). We propose that physicians' default approach to value-laden decision-making should be to tailor their role to the preferences of the surrogate, and to depart from this only if compelled to by a stronger ethical obligation, such as those outlined above.
We also found that male subjects and non-Catholic subjects preferred significantly more control for value-laden decisions compared with female subjects and Catholic subjects, respectively. No previous studies of surrogate decision makers have examined these associations. However, several studies of patients (rather than surrogates) suggest that male sex is associated with a preference for less control in medical decision making (27
). This discrepancy raises the possibility that the association between sex and decisional authority may be modified by whether one is acting as a surrogate or one is making decisions for oneself. The precise mechanism to explain this is unclear. Both associations should be interpreted with caution pending further research to replicate the finding and understand the explanatory mechanisms.
A somewhat surprising finding from this study is that a small minority of surrogates (12%) wished to retain final authority for the decision concerning antibiotic selection. However, these findings are qualitatively similar to those of other studies examining adult patients' preferred level of control over biomedical decisions. For example, in a large, population-based survey study in Canada, Levinson and colleagues found that a substantial minority of subjects disagreed with the statement that general medical decisions should be left up to doctors (31
). Two studies using a similar metric to that used in the present study also found that a small minority of subjects desired to retain final control over largely technical medical judgments, including the decision about which antibiotic to use to treat an infection (30
). In our experience, very few physicians involve surrogates in seemingly routine clinical decisions in ICUs, and doing so would be logistically complex. Because this is the first study documenting this finding in surrogates, additional research is warranted to confirm it and to understand the reasons that underlie this preference.
This study has several strengths. We studied surrogates of actual patients at high risk of death who were actively engaged in the process of surrogate decision making; we speculate that this increases the likelihood that participants' responses represent considered judgments about their preferred role in decision making. The sample was diverse in terms of ethnicity, level of education, and prior experience as a surrogate. We used a validated outcome measure of preferences for decisional control. We also used two conceptually distinct types of decisions to assess how control preferences vary according to the nature of the decision.
This study has several limitations. We used written clinical scenarios to illustrate the types of decisions under study. Although we believe this is a methodological improvement over prior research that did not specify the type of decision under study, it is possible that surrogates' stated role preferences could differ in actual clinical situations. We found that nearly two-thirds of the subjects screened positive for possible depression, which is a higher prevalence than other studies in ICUs. This may be due to our use of a brief depression screening tool to measure depressive symptoms rather than a longer instrument, which maximized sensitivity at the expense of specificity. The study was conducted in one region of the United States and therefore may not be generalizable to areas in which there are different cultural perspectives on the physician–family relationship. Because we studied only surrogates of patients at high risk of death, it is possible that their attitudes may not represent those of surrogates of patients in less dire clinical circumstances. Nonetheless, it is arguably most important to understand the preferences of surrogates actively facing difficult decisions about life-sustaining treatment.
In conclusion, this report provides new empirical data to inform the debate about how physicians should approach the process of surrogate decision making in ICUs. The vast majority of surrogates wish to be active participants in the decision-making process, although not all wish to have complete authority for the final decision. The variability in surrogates' role preferences highlights the need to assess surrogate decision makers' preferences and to tailor the decision-making process accordingly.