Hope and the art of dying
I often see television commercials for a cancer-treatment center in which “patients” rave about the caring treatment they received there, and compare it to the hopelessness they felt before they checked in. “My doctor told me there was nothing he could do,” they say. “The doctor said I had a few months to live. He wanted to give up.” The manipulation in these ads strikes me as distastefully blatant — the difference between death and survival, they imply, is how much your doctor is willing to fight. Terminal diagnoses come from doctors who don’t care enough to save your life.
Refusing to accept a death sentence is sometimes a good idea. But a doctor who gives his patients a frank diagnosis is not necessarily heartless — and in fact, the failure to be upfront can be harmful to a patient’s well-being. Atul Gawande examines the paradoxes of end-of-life care and treatment for terminal illness in an excellent article, “Letting Go,” in the August 2 New Yorker. Gawande is a surgeon and a med-school professor, and his thoughtful articles on health care are a major reason I subscribe to the New Yorker. This one covers a lot of ground in looking at how medical technology has changed our notion of “dying,” and what improving patient care might actually mean.
Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 medieval Latin text was reprinted in more than a hundred editions across Europe. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.
These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are?
The article looks at how hospice care is “helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.” Gawande points to a study that showed that doctors are actually far more likely to overestimate a terminally ill patient’s survival time than to underestimate — and that’s when they’re willing to make a guess at all, which they are understandably reluctant to do. No one wants to talk about death, and patients are liable to feel betrayed by a doctor who tries to get them focused on quality over quantity with the time they have left. Gawande knows this from experience as well as from statistics.
The article is long and often grim, but very much worth reading and pondering. I was struck by Gawande’s reference to Stephen Jay Gould, who argued in his 1985 essay “The Median Isn’t the Message” that “it has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity.” Gould preferred to rage against the dying of the light, and that worked for him — he survived a grim cancer diagnosis. But, Gawande says, “The trouble is that we’ve built our medical system and culture around the long tail” — that is, around the thin possibility of survival. “Hope is not a plan,” Gawande writes, “but hope is our plan.”
As Christians we have a broader definition of “hope” than simply “hoping to stave off death.” When it comes to facing death, in a spiritual sense, hope is our plan. How do we apply that to the realities Gawande’s article discusses?
P.S. You can read a transcript of a live chat with Atul Gawande about end-of-life care that took place yesterday afternoon. The very first question touches on something I thought about as I read: what is the role of hospital chaplains in preparing patients to discuss end-of-life issues?
P.P.S. In the comments, Jean Raber mentions a Commonweal article by Mary Lee Freeman that you might want to read (or reread) in conjunction with Gawande’s piece: “Caring for the Dying: My Patients, My Work, My Faith.”