By Michael DiStefano
Caring for children with life-threatening illnesses is very difficult for both parents and health care providers. The experience can be even more painful when the child refuses highly effective life saving treatment (HELST). Most states have “mature minor” statutes or case law that recognize the rights of children with demonstrated decision-making capacity (and who are usually older than 14 years) to make decisions about their health care as a legal adult, regardless of the wishes of their parents or providers. Two notable examples are Dennis Lindberg, a 14-year-old Jehovah’s Witness who died from leukemia after refusing a blood transfusion, and Benny Agrelo, a 15-year-old who died after refusing to continue taking immunosuppressants following two liver transplants. In each case a judge declared the boy a mature minor whose medical decisions must be respected.
However, the standard criteria for determining whether a minor has capacity are only likely to be adequate in the case of minors who invoke non-religious values to refuse HELST. I will argue that, though controversial, heightened scrutiny ought to be applied when minors justify their refusal with religious values. It therefore may have been wrong to treat Dennis Lindberg and others like him as mature minors.
In general, decision-making capacity rests on four conditions: (1) the ability to communicate a choice, (2) an understanding of the facts and information related to the choice, (3) an appreciation of the situation and its consequences, and (4) the ability to rationally manipulate the relevant information and to reason about treatment options.[i] These criteria ensure that a minor’s decision is valid in the logical sense. They require the minor to clearly state premises (i.e., subjective value statements and objective medical facts) that logically entail the truth of a clearly stated conclusion (i.e., whether to accept or refuse some treatment). Crucially, none of the criteria requires that the conclusion be philosophically sound. If so, we would need to be able to objectively determine whether all of an individual’s premises are true, in addition to the objective medical facts. However, because value statements are subjective, capacity determinations cannot require that minors’ decisions be sound if they are motivated by a desire to respect patient autonomy.
Still, merely valid decisions lack a critical component, namely, whether minors themselves genuinely believe their stated value premises. Some will object by noting that people generally do not state things they do not believe, especially when making high stakes decisions like whether to refuse HELST. However, this additional consideration is intended precisely for the admittedly rare circumstances in which minors express value premises with which they do not genuinely agree—knowingly or not—as a result of coercion or social pressures. These circumstances are worrisome because attempts to respect minors’ autonomy by granting mature minor status should not instead enable circumstances that have already compromised autonomy.
Patients who invoke religious values to refuse HELST are more likely to have experienced coercion or social pressures than those whose refusals rest on non-religious values. First, the stakes associated with religious values are more coercive than those associated with non-religious values because there is more to be lost by failing to uphold religious values. Religious values are often linked to absolute gains or losses. Eternal salvation often depends on whether one has lived according to the dictates of one’s faith. Non-religious values lack similar stakes. Of course, the repercussions for failing to honor non-religious values (e.g., moral distress, disappointment of loved ones, ostracization) are significant, but cannot compare to the gain or loss of something with infinite value like eternal life-after-death.
Second, religious values are frequently cultivated within tightly knit communities of like-minded individuals. The disappointment of loved ones and ostracization felt by those who fail to honor religious values are likely to be more acute than that felt by those who flout non-religious values. Of course, non-religious values are also inculcated within communities, but modern communities, especially those in Western liberal democracies, are pluralist in nature. Diverse communities are likely to tolerate a greater degree of divergence from value-based behavioral norms than homogenous religious communities that are typically the result of self-selection.
Third, young people are more easily influenced by their peers and other external pressures.[ii] Therefore, the religious values of minors active in religious communities are more likely to result from either a fear of absolute gains or losses or a desire to act in accordance with the expectations of those around them. Their religious values are less likely to be the result of their own considered and reflective deliberation.
Finally, education within religious communities is sometimes regulated (e.g., through home schooling or programs to complement public curricula) to limit access to competing views that may impact the values its adherents develop. Insofar as minors receive this regulated education, their religious values may be more a product of the views of their parents or community leaders than their own deliberation.
Returning to the cases introduced above, Dennis Lindberg, a Jehovah’s Witness, justified his refusal of HELST with the religious value that blood transfusions are contrary to the tenets of his faith. Per the traditional standards for demonstrating capacity, Dennis clearly articulated this value and logically demonstrated its relation to his refusal. However, the four reasons just discussed combined with the fact that his aunt—also a devoted Jehovah’s Witness—was raising him call into question how genuinely he believed the value. Benny Agrelo was not similarly influenced by religion.[iii] His refusal of HELST was based on the value that a shorter, but higher quality life is preferable to a more prolonged, but painful existence. He felt too sick while taking immunosuppressants to enjoy life. Benny’s parents initially held the opposite opinion,[iv] thus supporting the claim that non-religious values are less likely to be the result of social pressures.
When minors refuse HELST, providers should be especially mindful of the social forces that influence religious values. It is not enough to rely on the traditional criteria for determining decision-making capacity in these circumstances. Providers should engage more closely with these young patients, perhaps by adopting the deliberative model of the physician-patient relationship,[v] and do their best to ascertain how free they are from coercion or social pressures and how genuinely they believe their professed religious values. Similarly, the law should be revised with this heightened scrutiny in mind.
Michael is currently a Teaching and Research Assistant at the University of Pennsylvania where he recently completed a Master's degree in Bioethics. He graduated from Princeton University in 2011 with a degree in Religion and Philosophy. His research interests include religion and clinical ethics, the ethics of mobile health technologies and health incentives, and reproductive ethics. This post was chosen as a finalist for the 2014-2015 Daniel Callahan Young Writer's Prize.
[i] Paul S. Appelbaum, “Assessment of Patients’ Competence to Consent to Treatment,” The New England Journal of Medicine 357 (2007): 1834-40; Douglas S. Diekema, “Adolescent Refusal of Lifesaving Treatment,” Adolescent Medicine: State of the Art Reviews 22, no. 2 (2011): 213-28.
[ii] Diekema, “Adolescent Refusal of Lifesaving Treatment.”
[iii] Jonathan F. Will, “My God My Choice: The Mature Minor Doctrine and Adolescent Refusal of Life-Saving or Sustaining Medical Treatment Based Upon Religious Beliefs,” The Journal of Contemporary Health Law and Policy 22, no. 2 (2006): 233-300.
[v] Ezekiel J. Emanuel and Linda L. Emanuel, “Four Models of the Physician-Patient Relationship,” Journal of the American Medical Association 267, no. 16 (1992): 2221-6.