Science isn’t the only game in town. Literature can teach us things about the world that science can’t. It can give us vicarious experience and insight into other minds. Two recently published novels illuminate why perfectly rational people might reject the help of scientific medicine and prefer to die a little sooner but to die on their own terms.
In Finding Frances, by Janice M. Van Dyck, an elderly woman with COPD and heart disease has had a gradual decrease in her quality of life and has been ready to die for some time. She believes in God and an afterlife and is not afraid of dying. When she needs emergency surgery to remove a section of infarcted bowel, she wants to refuse it, but accepts mainly because she is told that otherwise she will be sent home where insurance won’t cover her care and her husband’s savings will be depleted (which isn’t really true). The first surgery leads to complications and she is offered a second operation with a 25% chance of success. She refuses despite the strong urgings of her health care providers and her entire family. She is given hospice care, stops eating, and eventually dies. The book chronicles the course of the death process in hospice, giving a feel for what the experience is like and how it impacts family members.
In The Leisure Seeker, by Michael Zadoorian, Ella and John, a couple in their 80s, set out on one last road trip in their RV, to follow the entire length of old Route 66 and revisit Disneyland. Their doctors and their children try desperately to dissuade them. He has Alzheimer’s and she has cancer and other health problems: between them they have one functional brain and one functional body. She has refused surgery and chemotherapy, uses a walker, and is dependent on pain pills. He has made her promise that she will never put him in a nursing home. After many mishaps, misunderstandings and misadventures, they manage to reach Disneyland. Then she finds a way to end both their lives at the same time so neither will be left alone. She is a feisty, colorful character and the book is hilarious despite its sad subject. Ella tells us what it feels like to become old and decrepit, to be handicapped and live in pain, and to live with a demented loved one who must constantly be watched and doesn’t always remember who you are. And how one can find joy in the small pleasures of life despite all those problems.
I don’t think I would make the same choices in their situation, but I can understand their choices and empathize with them. They didn’t give up hope or turn to false hopes, but they created their own realistic hope — the hope of a “good death.” They rejected dependence on medical care, took control of their lives, and met death on their own terms. I have to respect their autonomy and admire their courage.
As Ella says at the end of The Leisure Seeker after she plans her own and her husband’s death by carbon monoxide poisoning:
This is not always what love means, but this is what it means for us today. It is not your place to say.
This article was originally published in the Science-Based Medicine Blog.