Decision-Making Capacity, Informed Consent, and Surrogate and Substituted
Judgment at the Boundaries of the Self
Omar Sultan Haque and Harold Bursztajn
Omar Sultan Haque is a student at Harvard Medical School
and Harvard Divinity School, email@example.com. Harold
Bursztajn, MD, is Associate Clinical Professor of Psychiatry
of the Department of Psychiatry at Harvard Medical School and Co-founder
of the Program in Psychiatry and the Law (PIPATL)
at the Beth Israel Deaconess Medical Center, firstname.lastname@example.org.
©2007 by The Journal of Clinical Ethics. All rights reserved.
Momentous decisions with uncertain futures impel us towards deliberation
about the best next move. But most often we make decisions without conscious
reflection about the process of doing so. As is the case with many features
of our mental life, we find no need to scrutinize them until they malfunction.
Analogous to the famous and equally tragic cases of the American patient
H.M. and of the British composer Clive Wearing, in the case before us
anterograde amnesia has so swiftly dissociated the capriciously modular
components of the mind. The unfortunate circumstances present a number
of multifaceted questions about treatment decisions at a time when even
the word “decision” is called into question. And so we must ask and dissect
things that, under non-pathological circumstances, arise routinely from
. . .
There are no easy answers in the case before us, only more questions
. . . and more sadness.
Primo Levi, in his story "In
creates an imaginary world in which other’s memories of you congeal together
and somehow provide a semblance of a self, but it is one that is as easily
lost — as easily unmade, as made. In this excerpt from the story, the
protagonist describes what it feels like to have one’s sense of a (social?)
self dissolve — traumatic brain injury in slow motion, if you will:
Some three years after his arrival, Antonio noticed a surprising
fact. When he raised his hands, as a shield against the sun, say,
or even against a bright lamp, the light filtered through them as
if they were wax. Some later time, he observed that he was waking
earlier than usual in the morning, and he realized that this was
because his eyelids were more transparent; in fact, in a few days
they were so transparent that even with his eyes closed Antonio could
distinguish the outlines of objects.
At first he thought nothing of it, but toward the end of May he noticed
that his entire skull was becoming diaphanous. It was a bizarre and
alarming sensation: as if his field of vision were broadening, not
only laterally but also up, down, and backward. He now perceived
light no matter what direction it came from, and soon he was able
to distinguish what was happening behind him. When, in mid- June,
he realized that he could see the chair he was sitting on, and the
grass under his feet, Antonio understood that his time had come:
the memory of him was extinct and his testimony complete. He felt
sadness, but neither fear nor anguish. He took leave of James and
his new friends, and sat under an oak to wait for his flesh and his
spirit to dissolve into light and wind.
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