LAUSR

As clinical ethics practitioners, we appreciate the effort of Wright and colleagues (2018) and support their laudable goal of advancing ethically appropriate decision-making mechanisms for patients with disorders of consciousness (DOC), including those in minimally conscious states (MCS). One of us has previously opined on some of the challenges in ensuring ethical decision making on behalf of this patient population (Milleson 2016), and we both regularly see how these various challenges arise in the context of ethics consultation within a clinical setting. Our commentary is therefore not a critique of Wright and colleagues’ recommendation for a medical decision-making framework that supports MCS patients and their (potentially) reemerging autonomy, but rather a call for clarification on their choice to derive this framework from a developmental pediatric assent model. Our first point of clarification has to do with their use of the term “assent.” Wright and colleagues specifically reference a “developmental” model of assent, which involves progressively higher levels of expected comprehension from children as they mature into adulthood. This would contrast with a “strict” model of assent, which in our clinical experience is more commonly used, in which a child is expected to satisfy the same requirements as informed consent for an adult but is legally prevented from giving this consent due to their age (Katz, Webb, and Committee on Bioethics 2016). Children unable to demonstrate this higher level of sufficient comprehension can still be included in discussions regarding treatment decisions, but their “assent” would be understood to be simple agreement. For example, this would mean the difference between seeking simple agreement or acquiescence to ease treatment provision for an incapable child, rather than requiring informed assent before attempting a procedure on a capable child. Wright and colleagues appear to use both variations of assent interchangeably, rather than signifying agreement as one component of assent, which makes their use of “assent” and how their model would apply for MCS patients clinically a bit unclear. Another question we have has to do with the overall suitability of a developmental pediatric assent analogy when considering MCS patients. While the authors admit to certain caveats in their use of this analogy (namely, that with MCS patients there is no guarantee of recovery, no predictable timeline, and possible communication problems), there are other caveats to be considered as well. Along with the clinical question as to whether brain recovery in MCS patients is sufficiently similar to pediatric/adolescent brain development to warrant this analogy—a topic that we as nonphysicians leave to those with greater medical expertise—we have practical and theoretical concerns. First is that children (except in specific circumstances) are legally prevented from giving consent, which is what might compel resorting to an assent standard instead of seeking informed consent. Wright and colleagues do not clearly indicate whether they are only talking about patients who have been found legally incompetent and have had guardians appointed by the court, but in the absence of this legal process, it would seem that as MCS patients recover they would regain their ability to consent (to the extent that capacity is present), thereby eventually making an assent standard unnecessary and in fact inappropriate. Second, with pediatric assent, parents are often viewed as guardians of a child’s developing autonomy. However, with MSC patients, surrogates are presumably more apt to be viewed as guardians of a previously existing and now reemerging (potential) autonomy. The authors in fact acknowledge the developmental model is “inadequate” with regard to any prior competent wishes the patient may have expressed, but do not further explain why this is problematic for their approach. For pediatric patients (especially young ones), there is the presumption that the patient lacks or has not stated wishes that would be considered treatment-guiding (or, if stated, they would not have been deemed capable wishes). However, in the case of an adult patient who previously had capacity, the model for decision making on their behalf is different (usually a substituted judgment model or similar), where a surrogate decision maker either employs a patient’s previously expressed capable wish(es) or uses what is known more globally of that patient’s values to determine treatment goals and make decisions about specific interventions (see, e.g., Katz, Webb, and Committee on Bioethics 2016;