Ethics

Questionable Capacity of Patients’ Decision Makers: Ethical and Clinical Challenges

Jeffrey T. Berger, MD; Joel Frader, MD; Bridget Sumser, LCSW

Caring for patients who lack the capacity to make decisions is a common phenomenon. Surrogates make decisions for 25%–30% of hospitalized adults. Parents are presumptive legal decision makers in pediatrics, and the ethical and legal authority of such decision makers is well established. A vexing but not well-described problem in clinical practice is working with surrogates who are suspected of being impaired. Decision makers may be impaired due to a variety of causes, which include established psychiatric or psychological disorders, undiagnosed mental health problems, substance abuse disorders, dementia, or other cognitive disorders.

The core conundrum in these circumstances is that clinicians have no standing to substantiate suspicions of impairment or formally assess decision makers’ capacity, nor do they have standing to direct these individuals to seek appropriate health evaluations and services. In addition, clinicians often have no firm basis on which to pursue legal or administrative paths to challenge the decision maker’s authority. Although clinicians may have legal and ethical obligations to report suspicions of neglect or abuse of children and the elderly to public authorities, the behaviors often observed with suspected impairments do not rise to the level required to trigger involvement of protective services agencies. Clinicians respect established relationships between patients and their surrogates and should not rush to disqualify impaired surrogates from involvement in a patient’s care. Regard for family is based on the idea that relatives generally know the patient best, are best situated to represent the patient’s preferences and values, are most concerned with the patient’s welfare, and are the most affected by the consequences of healthcare decisions. Moreover, most patients are concerned about how their illnesses affect their relatives.