The (In)Capacity to Exclude: The Normative Value of Preferences in Surrogate Exclusion

Abstract: When patients are unable to make decisions for themselves, medical teams often turn to surrogate decision-makers to help identify what the patient would have wanted. Unless a patient has designated a surrogate, teams must rely upon legal hierarchies that indicate a decision-maker, which often prioritize legal and biological ties.

Because peoples’ relationships are often more complicated than is presumed in law, cases arise in which patients do not want their legal surrogate to be their medical decision-maker. When that happens, patients must take steps to exclude that person. Unfortunately, people often are not aware of this until they are unable to make complex medical decisions for themselves.

While much has been said about the capacity to appoint surrogates, comparatively little has been said about excluding surrogates. In current practice, a patient’s decision to exclude a surrogate would not be respected when they do not have capacity. It is our view that this blanket inclusion of surrogates is a problem. Allowing someone to act as a surrogate that the patient prefers to exclude, even if that preference is not capacitated, can be seriously harmful and potentially violating.

Our goals in this paper are twofold. First, we aim to carve out the decision to exclude a surrogate as distinct from the decision to appoint one. Second, we argue that respecting an incapacitated patient’s exclusion to some degree is morally appropriate. We will conclude by offering suggestions about how to respect the preference to exclude considering the risks that may come with exclusion.

Joanna Smolenski, PhD – Assistant Professor, Center for Medical Ethics and Health Policy, Baylor College of Medicine