How should treatment decisions be made for incapacitated patients, and why?

Abstract

Patients have gained unprecedented levels of control over their medical care, including prospective control over what treatments they will receive if they lose the ability to make decisions. The landmark Cruzan and Quinlan cases helped to secure patients' right to prospectively refuse life-sustaining treatments [1,2], while the Patient Self-Determination Act of 1990 mandated that patients be informed of the option to document their treatment preferences in an advance directive [3]. Despite these efforts, many individuals fail to complete an advance directive and seldom discuss their medical treatment preferences, often leaving clinicians with little indication for how they want to be treated [4–7]. Several groups have attempted to increase the number of people who complete an advance directive, and several approaches offer promise in this regard [8]. Yet, no method, no matter how exhaustive, will result in all individuals completing an advance directive, and no advance directive, no matter how detailed, will provide clear instructions for all clinical scenarios. For the foreseeable future, then, clinicians will continue to face the dilemma of how to treat some incapacitated patients in the absence of clear evidence regarding their treatment wishes. Most states in the US direct clinicians to turn to surrogate decision makers, identified through standardized relationship hierarchies, to make treatment decisions for incapacitated patients who did not designate a surrogate while capacitated. Surrogates, whether designated by the patient or the state's standardized hierarchy, are instructed to make the treatment decision the patient would have made if capacitated. Under this “substituted judgment” standard, a surrogate asked to decide whether to initiate dialysis for a comatose patient, for example, should try to determine what decision the patient would have made in the circumstances. Individuals often fail to complete an advance directive. The medical profession's reliance on surrogates to make treatment decisions for incapacitated patients gains support from the fact that the relevant considerations for choosing a substitute decision maker all seem to point to the family and loved ones. Allowing the patient's family and loved ones to make treatment decisions seems to respect their status as vital individuals in the patient's life [9–11] and may provide comfort at a difficult time. Reliance on those who know the patient best also seems to promote patient autonomy by maximizing the chances that the incapacitated patient's preferences will guide what treatments they receive. Finally, current practice seems consistent with patients' preferences for how treatment decisions should be made [12–14]. To test whether, in fact, these considerations all support the same approach, we assessed whether a population-based decision aid might predict patients' treatment preferences more accurately than surrogates.