If a PPP increases predictive accuracy, the majority of experienced surrogates interviewed supported its use. This finding, paired with previous findings of patient support, suggests that a PPP could offer a valuable way to improve decision-making for decisionally-incapacitated patients.
Previous research has found that patients endorse three primary goals with respect to surrogate decision-making: receive the treatments they want, minimize the burden on loved ones, and keep loved ones involved in the decision-making process [14]. The present finding of experienced surrogate enthusiasm suggests a PPP could offer a way to promote all three goals. This possibility provides strong support for developing and testing a PPP to see whether it is feasible, and whether its use increases surrogates’ predictive accuracy.
One possibility would be to use the prediction of the PPP as a "soft" default [18, 19]. Specifically, clinicians could provide the surrogate with the treatment prediction of the PPP and suggest treating the patient accordingly, unless the surrogate objects. Providing the PPP prediction could help structure discussions regarding the treatment plan around an evidence-based starting point. This approach may reduce the decision-making burden on surrogates who are uncertain about the patient’s preferences. Alternatively, a soft default would allow surrogates who are confident of the patient’s treatment preferences to select that option whenever it conflicts with the PPP.
At the same time, the present findings highlight several important challenges. First, they reveal a fundamental disagreement between patients and surrogates. Respondents pointed out that surrogates have the responsibility of making treatment decisions for decisionally incapacitated patients. As a result, they overwhelmingly felt that surrogates should have the authority to decide how to make treatment decisions, including whether to use PPPs. Consistent with this view, several respondents indicated that they would not use a PPP, even if it increases predictive accuracy, because they made decisions based on what they thought was best for the patient, not based on what they thought the patient would choose themselves.
A majority of patients, in contrast, prioritize making treatment decisions during periods of decisional incapacity in ways that are most likely to result in their being treated consistent with their own preferences. In particular, most patients prefer decision-making procedures that more accurately predict their treatment preferences to methods that minimize the stress on their family [14]. These findings suggest that, if a PPP increases predictive accuracy, most patients would want it to be used, even when doing so conflicts with their surrogates’ preferences.
Taken together, these findings reveal a critical need for future research to determine whose preferences, the patient’s or the surrogate’s, should govern surrogate decision-making. If patient preferences should have authority, we might design advance directives to permit patients to indicate their preferences regarding the decision-making process, including use of PPPs. Conversely, if surrogates should have the final say, procedures should allow them to make decisions that contradict the patient’s preferences, including the patient’s preference regarding use of PPPs.
In the meantime, clinicians should be aware of and take prospective steps to try to address this potential conflict. Specifically, clinicians should encourage surrogates and patients to discuss not only the patient’s treatment preferences, but also how treatment decisions will be made on their behalf [20]. Does the patient want the surrogate to decide based on substituted judgement or best interests or the preferences of the surrogate? Is the surrogate willing to use that approach? If a tool such as a PPP were to become available, clinicians should discuss with their patients, and encourage their patients to discuss with their surrogates, how they would want it implemented. If the patient and surrogate cannot agree, the patient should be encouraged to consider whether to assign a different surrogate.
Second, a number of respondents indicated that they would not use PPPs personally because they felt confident they knew which treatments the patient wanted. This confidence is likely protective: uncertainty regarding which treatments the patient would want is a significant source of stress for surrogates. At the same time, data suggests that even surrogates who have known the patient for decades often are mistaken about their charge’s treatment preferences [21, 22, 23]. Moreover, prior discussions between surrogates and patients do not seem to increase surrogates’ predictive accuracy [24].
This raises an ethical dilemma that should be addressed prior to implementing PPPs. In cases where surrogates are confident of the patients’ treatment preferences, use of a PPP has the potential to increase the chances that patients are treated consistent with their preferences. But, its use may also undermine surrogates’ confidence and thereby increase their decision-making burden. More work is needed to assess whether we can prime surrogates for the possibility that an accurate PPP may undermine their confidence they are making the right choice.
Third, a PPP should be developed and implemented to address the concern that it might be used to deny expensive care to patients who need it. In addition, while only one participant raised this concern, it will be important to address the potential for algorithmic bias, especially with respect to minority populations [25].To this end, development of the PPP should include input from all groups to ensure it is not skewed in favor of majority populations. It will be critical for implementation purposes to secure the trust of all groups. One possibility in this regard would be to establish an independent board to oversee the development and implementation of a PPP.
Limitations
Our study has several important limitations that should be addressed by future research. First, we interviewed only English speaking surrogates. Second, our participants were all recruited from urban settings and may not reflect the views of others. Third, most of our respondents were female, although this may mirror the surrogate population at large given gendered differences in life expectancies, caretaking responsibilities, and state laws assigning spouses as the default surrogates when the patient did not designate a surrogate [26].