By Omar F. Mirza, Yekaterina Angelova, Marie S. Thearle, Gregg A Robbins-Welty, and Stephanie Cheung
Informed consent is part of the bedrock of clinical ethics. Composed of voluntariness, disclosure, and capacity, informed consent is designed to center the patient in their own care amidst an asymmetric power dyad that can easily overpower individual choice. Despite early legal warnings cautioning against an overemphasis on comprehension as the key component of consent, capacity has often been given disproportionate attention—at the expense of disclosure and voluntariness.
The current gold standard, introduced by Appelbaum and Grisso (“Assessing patients’ capacities to consent to treatment”) emphasizes understanding, reasoning, appreciation, and choice as the key abilities for decisional capacity. Enhanced by an oath to “do no harm,” clinical medicine has a rich history of imperialism that is extensively documented in Harriet Washington’s book Medical Apartheid. Through a process originally meant to preserve autonomy, the capacity challenge leverages a power asymmetry to uproot indigenous moral reasoning and cultural frameworks in favor of a prioritized biomedical model. Consequently, clinicians reinscribe hierarchies of power that pathologizes and subordinates non biological reasoning in favor of scientific rationality. Recognizing medicine’s predisposition to become a tool of oppression—particularly in psychiatry—our research team has worked to highlight the dangers of capacity challenges.
We have previously documented racial disparities in the application of capacity assessments from a data set in a different New York City health center and reconceptualized capacity from an inert assessment to an intrusive intervention with its own set of risks. Now, we tackle one of our more controversial observations—that capacity is used disproportionately when patients refuse care, often with intent of compelling treatment.
To test this, we conducted a retrospective cohort study examining the proportion of capacity challenges in an New York City health center that were requested in the context of treatment refusal, the factors that predicted such challenges, and the implications for patient autonomy.
The findings were striking. Over a two-year period, 122 consults were placed for capacity assessments; more than 90% occurred when patients declined some aspect of recommended care. Men were significantly overrepresented in these cases, while patients of Hispanic ethnicity were underrepresented. Yet neither gender, race, nor primary language predicted whether a patient was ultimately judged to have capacity. When patients were de-centered from decision-making—judged incapable of making their own medical choices—their odds of treatment completion were more than four times higher compared with patients who retained capacity.
Our findings invite deeper inquiry into the way capacity challenge is used in the clinical setting. When capacity is questioned almost exclusively in the context of refusal, we wonder whether the true intent is protection, or paternalism. A paternalism that prioritizes comprehension to the exclusion of personal values conflates refusal with incapacity and compliance with competence.
Overrepresentation of men in our data for assessments may reflect cultural attitudes where men, more than women, are socialized to challenge authority and assert their independence; this could also be interpreted as aggression, which itself is a trigger for involving behavioral health teams. Women, conversely, may be more likely to defer to authority and accept care with which they may privately disagree.
Regardless of intent, capacity challenges may reinforce problematic gender roles and a colonial logic that prioritizes treatment of pathology over respect for patient values. If informed consent is to mean anything, we must not allow capacity challenges to be used toward satisfying latent desires to enforce compliance. We echo the call for value-based capacity models, such as that proposed by Dr. Jacob Appel (“A Values-Based Approach to Capacity Assessment”), which seeks to realign capacity assessment with the patient’s own values and goals rather than the clinician’s focus on treating pathology.
Authors: Omar F. Mirza D.O.1, Yekaterina Angelova M.D.1, Marie S. Thearle M.D. M.Hsc2, Gregg A Robbins-Welty MD. M.S. HEC-C 3, Stephanie Cheung M.D.1
Affiliations:
1) Department of Psychiatry, NYC Health + Hospitals/Harlem, New York, NY, USA.
2) Department of Medicine, NYC Health + Hospitals/Harlem, New York, NY, USA
3)Departments of Medicine and Family and Preventative Medicine, Emory University School of Medicine and Grady Memorial Hospital, Atlanta, Georgia, USA
Conflicts of Interest: None declared