Decision-Making Capacity, Informed Consent, and Surrogate and Substituted Judgment at the Boundaries of the Self

Omar Sultan Haque and Harold Bursztajn

The Journal of Clinical Ethics 18 (2007): 247-251

Omar Sultan Haque is a student at Harvard Medical School and Harvard Divinity School, 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, ©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 prodded introspection.

. . .


There are no easy answers in the case before us, only more questions . . . and more sadness.

Primo Levi, in his story "In The Park" 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.

To order this article in full, please go to Article Express at the website of the Journal of Clinical Ethics.