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.
[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.
[iv] Ibid.
[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.
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