The standard approach to treatment decision making for incapacitated patients often fails to provide treatment consistent with the patient’s preferences and values and places significant stress on surrogate decision makers. These shortcomings provide compelling reason to search for methods to improve current practice. Shared decision making between surrogates and clinicians has important advantages, but it does not provide a way to determine patients’ treatment preferences. Hence, shared decision making leaves families with the stressful challenge of identifying the patient’s preferred treatment (...) option. To address this concern, the present paper proposes to incorporate the use of a “Patient Preference Predictor” (PPP) into the shared decision-making process between surrogates and clinicians. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Use of a PPP is likely to increase the chances that incapacitated patients are treated consistent with their preferences and values and might reduce the stress and burden on their surrogates. Including a PPP in the shared decision-making process therefore has the potential to realize important ethical goals for making treatment decisions for incapacitated patients. The present paper justifies this approach on conceptual and normative grounds. (shrink)

There are substantial data establishing that surrogates are often mistaken in predicting what treatments incompetent patients would have wanted and that supplements such as advance directives have not resulted in significant improvements. Rid and Wendler’s Patient Preference Predictor (PPP) proposal will attempt to gather data about what similar patients would prefer in a variety of treatment choices. It accepts the usual goal of patient autonomy and the Substituted Judgment principle for surrogate decisions. I provide reasons for questioning sole reliance on (...) autonomy when surrogates, not patients, are deciding and for giving some independent weight to patient well-being. Moreover, that family members, typical surrogates, will know best what the patient if incompetent would have wanted is not the only reason why they are chosen. The more pressing problem is that the PPP would fail to remove the more serious mistakes that empirical psychology over the last few decades has shown to infect such decision making. (shrink)

It has recently been proposed to incorporate the use of a “Patient Preference Predictor” (PPP) into the process of making treatment decisions for incapacitated patients. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Including a PPP in the shared decision-making process between clinicians and surrogates has the potential to better realize important ethical goals for making treatment decisions (...) for incapacitated patients. However, developing and implementing a PPP poses significant practical challenges. The present paper discusses these practical challenges and considers ways to address them. (shrink)

The authority of surrogates—often close family members—to make treatment decisions for previously capacitated patients is said to come from their knowledge of the patient, which they are to draw on as they exercise substituted judgment on the patient’s behalf. However, proxy accuracy studies call this authority into question, hence the Patient Preference Predictor (PPP). We identify two problems with contemporary understandings of the surrogate’s role. The first is with the assumption that knowledge of the patient entails knowledge of what the (...) patient’s choice of treatment would be. The second is with the assumption that a good decision reproduces the content of that choice. If we are right, then the PPP, helpful though it might be in guiding surrogates’ decisions, nevertheless would hold them to the wrong standards and in that way could add to, rather than relieve, the stress they experience as they try to do their job. (shrink)

In pursuit of the dream that patients' exercise of autonomy could extend beyond their span of competence, living wills have passed from controversy to conventional wisdom, to widely promoted policy. But the policy has not produced results, and should be abandoned.

In this paper, I set out two ethical complications for Rid and Wendler’s proposal that a “Patient Preference Predictor” (PPP) should be used to aid decision making about incapacitated patients’ care. Both of these worries concern how a PPP might categorize patients. In the first section of the paper, I set out some general considerations about the “ethics of apt categorization” within stratified medicine and show how these challenge certain PPPs. In the second section, I argue for a more specific—but (...) more contentious—claim that proper respect for the autonomy of incapacitated patients might require us to act on reasons which they could endorse and show how this claim places important limits on the categories employed by an ethically acceptable PPP. The conclusion shows how these concerns about apt categorization relate to more familiar worries about Rid and Wendler’s proposals. (shrink)

Rid and Wendler propose the development of a Patient Preference Predictor (PPP), an actuarial model for predicting incapacitated patient’s life-sustaining treatment preferences across a wide range of end-of-life scenarios. An actuarial approach to end-of-life decision making has enormous potential, but transferring the logic of actuarial prediction to end-of-life decision making raises several conceptual complexities and logistical problems that need further consideration. Actuarial models have proven effective in targeted prediction tasks, but no evidence supports their effectiveness in the kind of broad (...) spectrum prediction task that is the proposed goal of the PPP. We argue that a more focused approach, targeting specific medical conditions and generating treatment predictions based on the preferences of individuals with actual disease experience, is both more firmly grounded in past research and is a more prudent initial strategy for exploring the efficacy of actuarial prediction in end-of-life decision making. (shrink)

The Patient Preference Predictor (PPP) is intended to improve treatment decision making for incapacitated patients. The PPP would collect information about the treatment preferences of people with different demographic and other characteristics. It could be used to indicate which treatment option an individual patient would be most likely to prefer, based on data about the preferences of people who resemble the patient. The PPP could be incorporated into existing US law governing treatment for incapacitated patients, although it is unclear whether (...) it would be classified as evidence of a specific patient’s preferences or those of a reasonable person sharing certain characteristics with the patient. Ethical concerns about the quality and significance of PPP choices could influence legal decision makers’ views of the PPP. (shrink)