Decision-Making Capacity in People With Anorexia Nervosa

In January 2024, The New York Times Magazine published a provocative article titled: "Should Patients Be Allowed to Die From Anorexia?" This seemingly extreme question reignited a debate among doctors, psychologists, patients, and families: to what extent can a person with severe anorexia nervosa be considered capable of refusing treatment?

Holmes and colleagues from the Indiana University School of Medicine recently addressed this controversial issue in an article published in JAMA Psychiatry. They highlight that anorexia nervosa is one of the most complex and life-threatening mental health disorders, with one of the highest mortality rates in psychiatry. The illness not only deteriorates physical health but also impairs the patient’s decision-making capacity, often leading to a persistent refusal of treatment—even in cases of severe malnutrition and life-threatening conditions.

Decision-making capacity: A crucial issue

According to the authors, decision-making capacity is at the core of the debate. Traditionally, doctors assess this ability based on four key criteria established by Appelbaum and Grisso in 1988:

1. Understanding medical information provided.
2. Awareness of their condition and the consequences of their choices.
3. Ability to reason and evaluate available options.
4. Expressing a choice consistent with their values and desires.

For patients with anorexia nervosa, this assessment is particularly challenging. Many individuals, despite having intact intelligence and appearing lucid, are driven by internal coercion: an uncontrollable urge to refuse food and resist weight recovery, even in the face of severe medical consequences. This mechanism makes distinguishing between an authentic refusal and a decision distorted by the disorder difficult.

Prognostic uncertainty and the ethical dilemma

According to Holmes and colleagues, one of the most debated aspects is the uncertainty surrounding the prognosis. Some patients, despite numerous failed treatments, continue to refuse care, leading doctors to question whether further interventions are justified. However, predicting the course of anorexia nervosa is extremely difficult—there are cases of individuals who, after years of hospitalizations and refusals, eventually embark on a recovery journey.

This uncertainty leads to differing interpretations of decision-making capacity. Some doctors argue that if no improvement is evident, respecting the patient’s refusal is ethically appropriate. Others believe that treatment should still be pursued, even involuntarily, in the hope of future recovery.

Beyond the clinical challenge, medical professionals face a significant ethical conflict. Forcibly treating a patient with severe anorexia nervosa can be psychologically and emotionally distressing, as it imposes a path that may be perceived as additional suffering, increasing resistance, and non-compliance with care.

On the other hand, declaring a patient "competent" to refuse treatment may sometimes be an unconscious strategy to relieve the burden of decision-making, shifting responsibility from the doctor to the patient, and in this scenario, respecting autonomy risks becoming a form of therapeutic abandonment.

Towards a broader, multidisciplinary approach

Holmes and colleagues caution that an excessive focus on decision-making capacity risks oversimplifying a complex issue, shifting the debate away from a more comprehensive consideration of patient well-being. A more effective approach could include:

• Multidisciplinary assessment involving psychiatrists, nutritionists, ethicists, and social workers to gain a holistic view of the situation.
• Long-term support, offering flexible and adaptable treatment options rather than an all-or-nothing approach.
• Transparent communication, helping patients understand available options and reducing the perception of coercion.
• Family involvement, which can provide crucial support throughout the treatment process.

Conclusions

Managing patients with severe anorexia nervosa remains one of the most complex challenges in modern medicine. According to Holmes and colleagues, decision-making capacity alone cannot determine whether a patient should receive treatment. The risk of misjudgment is high: blindly respecting a refusal from someone who may not fully grasp their condition could mean forfeiting their chance at recovery, while enforcing treatment without considering the broader context may cause further harm.

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For this reason, a broader approach is necessary—one that goes beyond a strict evaluation of decision-making ability and considers all clinical, emotional, and ethical aspects. Only through this comprehensive perspective can appropriate care, respect, and a real chance at recovery be provided to these patients.