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Letter to the Editor

To the Editor We recently encountered a mixed martial artist (MMA) with a skull base encephalocele. The patient refused surgery because it might mean the end of his MMA career. This case reinforces the principle of conditional autonomy, explores how to navigate challenging assessments of decision capacity, and probes one’s right to refuse treatment. This particular case illustrates inherent challenges in assessing a patient’s decision-making capacity and in reconciling a patient’s right to refuse treatment with the provider’s duty to act beneficently. The patient experienced a seizure that prompted neurologic consultation. The neurologist initiated anticonvulsant therapy and obtained radiographic imaging. On identification of the encephalocele, the patient was referred to our clinic. Although this episode was his first formal medical evaluation, the patient admitted that he had lost consciousness more than 20 times during his MMA career and that he had headaches and slowed speech. His surgeon counseled the patient to consider repair of the skull base defect. In addition to discussing the postoperative activity restrictions, she counseled the patient to cease participation in MMA altogether. The patient was resolute in his refusal to consider surgery because of the need to limit MMA postoperatively, and he would not contemplate ending his MMA career. This case illustrates the concept of conditional autonomy. The basic principle is that competent patients have the right to make decisions about their medical care.1 Competence is a legal designation made by the courts, not by health care providers. Capacity is a related concept that is assessed by health care providers. A patient’s capacity for decision making, and thus his autonomy, may be conditional, based on the clinical context.2 Health care providers assess a patient’s capacity to make an autonomous decision based on the patient’s reasoned choice in the context of the patient’s personal beliefs and values.3 Autonomy requires the patient to understand possible consequences of his or her choice and to communicate his or her preferences to the provider. The patient’s capacity to make a decision is independent of the provider’s personal opinion. However, it is not unethical for a provider to persuade a patient. Persuasion is not equivalent to paternalism or coercion.4 In fact, many experts would argue that persuasion is an essential component of the physician-patient relationship. A patient may refuse treatment.3,5 He or she should be allowed to explain his or her rationale, and the provider should attempt to understand the context of the patient’s refusal. Although a provider’s medical judgment does not override a patient’s right to refuse treatment, there are select circumstances in which a provider’s medical judgment may prevail over the patient’s desire. For example, if there were a potential endangerment of others, then the provider may not honor a patient’s request.6 In this particular case, the neurologist’s decision to restrict the patient from driving exemplifies physician empowerment to make a unilateral decision to protect the welfare of others. In contrast, the patient’s refusal of surgery and plans to continue MMA did not place others directly at risk. Unlike restricting his driver’s license, strict criteria must be met to provide invasive treatment without the patient’s consent for a condition that is not immediately life threatening. A court order is necessary to determine the patient’s competence. If the patient were declared incompetent, then a legal guardian or surrogate would be appointed.1 In our case, the patient’s injuries were not immediately life threatening and he was not legally incompetent. Given his repeated head trauma and impaired executive function, there was concern that he lacked the judgment and insight to appreciate the inherent consequences of his choice, but his decision-making capacity had not yet been formally assessed. In this case, the patient reiterated his intentions to avoid surgery and to continue MMA. To better assess his capacity as well as to inform and educate the patient about possible sequelae of his repeated head trauma, his surgeon referred him for a neuropsychologic evaluation and asked him to return for further discussion. Unfortunately, the patient never followed through with the neuropsychologil or otolaryngology appointments at our institution, and his current condition remains unknown. The patient’s refusal to undergo neuropsychologic testing precluded comprehensive delineation of his decision-making capacity. His refusal to return for any follow-up is distressing. Possible outcomes that could have been pursued include (1) consultation with the hospital ethics committee, (2) attempting to negotiate with the patient that a temporary hiatus from MMA after encephalocele repair may ultimately lengthen his MMA career, and (3) respecting the patient’s choice. In this case, a close family member who was present at the consultation affirmed that the patient’s choice was consistent with his personal values. Despite efforts to arrange follow-up and ensure continuity with his other medical providers, the patient has declined to make subsequent appointments. His surgeon did not believe the patient’s condition met a threshold for either violation of his privacy or involvement of the courts, and the physician chose to respect the patient’s decision. Whether or not this was the “right” or best decision, we do not know.