In the philosophical literature on dementia, scholars speak of a contest between the “then-self” before the disease and the “now-self” after it: between how a person with dementia seems to want to live and how she previously said she would have wanted to live. Many academic papers on the question begin in the same way: by telling the story of a woman named Margo, who was the subject of a 1991 article in The Journal of the American Medical Association (JAMA), by a physician named Andrew Firlik. Margo, according to the article, was 55 and had early-onset Alzheimer’s disease and couldn’t recognize anyone around her, but she was very happy. She spent her days painting and listening to music. She read mystery novels too: often the same book day after day, the mystery remaining mysterious because she would forget it. “Despite her illness, or maybe somehow because of it,” Firlik wrote, “Margo is undeniably one of the happiest people I have known.” A couple of years after the JAMA article was published, the philosopher and constitutional jurist Ronald Dworkin revisited the happy Margo in his 1993 book, “Life’s Dominion.” Imagine, he asked readers, that years ago, when she was fully competent, Margo had written a formal document explaining that if she ever developed Alzheimer’s disease, she should not be given lifesaving medical treatment. “Or even that in that event she should be killed as soon and as painlessly as possible?” What was an ethical doctor to do? Should he kill now-Margo, even though she was happy, because then-Margo would have wanted to be dead? In Dworkin’s view, it was then-Margo whose wishes deserved moral weight. In his book, he made a distinction between two kinds of interests: “experiential” and “critical.” An experiential interest was reactive and bodily: the pleasure of eating ice cream, say. A critical interest was much more cerebral; it reflected the character of a person and how she wanted her life to be lived. In the case of advanced Alzheimer’s disease, Dworkin argued, there is a danger that critical interests will be usurped by experiential ones. Still, it was the critical interests, previously stated, that deserved to be satisfied, because it was those interests that gave human life its meaning and its dignity — and even made it sacred, in a kind of secular way. A person was respected if she was helped to live out her chosen course, not if her life trajectory was allowed to be derailed by the amnesiac whims of her diseased self. Some philosophers have devoted themselves to reconsidering Margo. They accuse Dworkin of holding too limited a view of meaning. Couldn’t a life of tiny pleasures be meaningful, even if it wasn’t the product of some sophisticated life plan? Critics have asked why we should privilege the decisions of a person who effectively no longer exists over the expressed choices of the person who is sitting before us, here and now. On a practical level, what authority could the then-self possibly exert over the now-self? And while Dworkin’s theory might apply to those in the advanced stages of the disease, it speaks less to a majority of patients in the mild and moderate phases. The in-between Margos. Dworkin’s theory also distinguishes between selves in a way that strikes some critics as misguided. A person is not like Plutarch’s Ship of Theseus: replaced, plank by plank, over the course of her voyages, leaving those aboard to wonder if she is still the old ship or instead a new one — and, if she is a new one, when exactly she ceased to be the other. A person always is and is not who she used to be. Still, many adult children cling to an image of a parent’s then-self and work relentlessly to protect it. Adult children “tend to be confident leaning on the side of a Dworkin-type view,” says Matilda Carter, a postdoctoral fellow in philosophy at the University of Glasgow and a former dementia caregiver. They don’t want a parent’s confused, 11th-hour choices to “tarnish the legacy of her life beforehand.”
“A Story of Dementia” from New York Times
