Professor of biomedical ethics Lois Shepherd wrote If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo. She teaches courses in health-care law and ethics at both the law and medical schools at UVA.
What neglected or lost classic would you recommend?
Catcher in the Rye by J. D. Salinger is not so much a neglected classic as a widely misunderstood one. The standard take is that Holden Caulfield, the iconoclastic teenage narrator, is disgusted with the phoniness of the adult world and doesn’t want to grow up. But I think that’s wrong; Holden’s struggle with the world comes from his deep grief over the death of his younger brother. What he can’t understand is how, following this tragedy, the world continues to go on—the day-to-day of people’s lives, the importance placed on things that are ultimately meaningless. The depth of his grief is revealed in his inability to even talk about his brother’s death—it’s only mentioned a couple of times.
Books like this one tend to affect my work as much as scholarly works on law or ethics. In Catcher in the Rye, we see the deep personal devastation that can come with the death of loved ones.
Is there a particular book that changed how you look at the world?
I’ve just read Eichmann in Jerusalem: A Report on the Banality of Evil by Hannah Arendt. She captures the importance of language in identifying right and wrong, and makes a strong argument—with historical evidence—that those who stand up to overpowering evil have a better chance of averting or diluting it than we might commonly assume. The use of language is particularly important in health-care ethics, law and politics—witness “pro-choice” and “pro-life” labels, and whether we call a PEG tube that delivers artificial nutrition and hydration to patients “invasive medical treatment” or “food and water.”
Dostoevsky’s Crime and Punishment always sticks with me, too. The protogonist thought he could carry out a murder because he intellectually justified it. But no amount of cerebral intellectualizing could calm his emotional distress over actually performing the act, which was his undoing. A similar reaction crops up in my field a lot. Scholars who have studied and written about biomedical ethics in rather dispassionate ways suddenly face a personal tragedy and their whole world—including their fundamental approach to questions they’ve pondered for years—is undone. We can’t ignore what people actually experience.
What book would you recommend on the subject of end-of-life law and ethics?
I would recommend William Colby’s book on the Cruzan case, Long Goodbye. Colby was the lawyer for Nancy Cruzan’s parents in their battle to have her feeding tube removed in the 1980s. With inside knowledge, he takes the reader through the personal story of the Cruzans, the history of the right to refuse treatment and the fascinating legal case itself.
What fiction best approaches the intersection of dying and medicine?
Margaret Edson’s play Wit is very good. One of its main lessons is how lost people feel when dying in institutions, like hospitals, and how much simple human caring they need. It does a good job of showing how the patient can get lost in pursuit of the disease.