Including Incapacitated Patients in Decision Making

Abstract: There is general agreement that, when a patient lacks decisional capacity, decisions about their care should be based upon wishes the patient expressed while capacitated or guided by a surrogate decision maker familiar with the patient’s values. At the same time, ethicists often assert that incapacitated patients should be included in the decision-making process to the greatest extent possible. It is not uncommon for a patient to lack the capacity to make a given medical decision while retaining the ability to express preferences about their care. While such preferences may not be definitive in the ethical analysis of a case, they arguably warrant serious consideration. This presentation seeks to address several questions underlying this position: Why is it important to include incapacitated patients? When, if ever, is it appropriate to exclude them? How should ethicists navigate disagreements about whether and to what extent to include an incapacitated patient? I will argue for a default position of including incapacitated patients in the decision-making process, citing the ethical importance of their experience of illness and treatment, as well as the limitations of advance care planning and substituted judgment. I will also outline several exceptions to this default position, which include instances where involving the patient would cause them undue distress and instances where the patient’s current preferences diverge significantly from their previously expressed preferences and they are likely to regain capacity. The goal is to make explicit the justifications for a practice that is often implemented but rarely defended.