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Posted on November 4, 2019 at 10:31 AM

 

Sometimes patients who lack decision-making capacity
refuse treatment that would be in their best interests. Imagine, for example, a
patient suffering from acute schizophrenia who adamantly and persistently refuses
to take antipsychotic medication that would relieve his symptoms. And suppose,
further, that this patient poses no danger to himself or others, but that his
mental illness prevents him from understanding his diagnosis as well as his
likely prognosis with and without the treatment. Should a provider treat such a
patient over his objections?

 

My reflections begin with the observation that in most
cases of this kind, physicians tend to respect the patient’s incapacitated
refusal, either by honoring it, or, at the very least, by treating it with
great seriousness. Why? The simple answer is a legal one: in New York and many
other states, it is against the law to treat patients over their objections
except in cases in which the treatment will prevent them from endangering themselves
or others. My interest here, though, is ethical rather than legal: what ethical
justification can we offer for this practice?

Answering this question is challenging in part because
honoring incapacitated refusals is not obviously justifiable by appeal to any
of Beauchamp and Childress’s famous four principles of biomedical ethics: The
decision to honor an incapacitated refusal has nothing to do with the fair
distribution of benefits and burdens, and so it is not a matter of justice.
Nor can it be justified by appeal to beneficence or non-maleficence,
as allowing the patient to forgo treatment would make him worse off. The
principle of autonomy does not provide support for honoring the refusal,
either, at least on a classical understanding of “autonomy.” This is because
autonomy is traditionally understood to involve more than the mere ability to
do what one happens to want at a given moment. Rather, autonomy is a matter of
rational self-governance: it requires a baseline level of understanding of
one’s situation, one’s options, and the possible consequences of selecting one
of those options. The right of autonomy is a right to make otherwise
permissible decisions without the influence of distorting factors, such as
intoxicating drugs, false and misleading information, and coercive threats.
Severe mental illness is one of these distorting factors insofar as it prevents
a patient from making informed decisions that express his values. In the case I
began with, the patient did not understand either his diagnosis or his
prognosis, he did not have a good grasp of his options, and he was in no
position to weigh different courses of treatment and assess their compatibility
with his goals and ideals. Indeed, we may even suppose that treating such a
patient over his objections would be the only way to restore his
capacity for autonomous self-governance.

To be clear, I am not making the case that we ought to
override all incapacitated refusals. I do not believe that we should. My point here
is that strict adherence to the four-principle model would make it seem as
though we obviously should. After all, beneficence would strongly
recommend overriding an incapacitated patient’s wishes, and none of the other
principles would recommend honoring them. But this apparent clarity is a mirage:
the choice of whether to honor incapacitated refusals is plainly a difficult
one, and this difficulty is reflected in the seriousness with which our
practice and law approach them. Indeed, in their handbook, Addressing
Patient-Centered Issues in Health Care
, the American Society for Bioethics
and Humanities explains that the strenuous objections of incapacitated patients
“should be given ethical weight, and sometimes considerable, or even definitive
weight.”

This weightiness is evidence of an unexposed value. Like
autonomy, this value seems to demand a kind of interpersonal respect. Unlike
autonomy, the capacity we are supposed to value and respect is not a capacity
for self-governance in light of a basic understanding of relevant information
and one’s goals. Whether one articulates this hidden value as a novel “form” of
autonomy that has nothing to do with informed self-governance, or as something
altogether new, is not important. No matter what we call it, we must explain
exactly what this value is and why we ought to take it seriously. That is the
heart of the challenge.

This is a task that I am beginning to undertake as
part of my research here at AMBI. By the time I write my next blog post, I hope
to be able to share at least some progress toward an answer. 

 

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