“Some patients ask us to do everything,” I told her. “That means electrical shocks, a breathing tube, the ICU. We could do that. Other patients tell us that they don’t want any of this and would prefer just to be comfortable.”
She finally answered: “Well, I don’t know. If my heart stopped tonight? Do everything.”
I made a check mark on my to do list for the evening and thought about the way it feels when ribs break under your hands during chest compressions.
I know that my intentions were good. After all, our intentions generally are. But perhaps our assumptions are flawed, and this is what gets us into trouble. At the University of Pennsylvania, Dr. Scott Halpern, an assistant professor, runs a program that aims to improve end-of-life care by studying how people make decisions. His group recently tested the idea that end-of-life decisions could be influenced by the way options were presented.
They asked more than 100 patients with terminal diseases to fill out one of three advance directives. Two of the sample advance directives had one option already checked off. This was the default—in one the default requested doctors to focus on comfort, the other set asked to extend life at all cost. In either scenario, the patient was free to choose a different option.
My conversations have always assumed that regardless of how I present the information, people should be “immune,” as Halpern says, to the types of bias that plague other decision-making arenas. But that’s not the case. Patients were more likely to elect to receive comfort-oriented care at the end of their lives if that was the default option they were randomly assigned. The default options also changed people’s decisions about chest compressions and breathing machines and feeding tubes.
The patients weren’t any different but the default options were and thus, so was the care these groups said they’d want at the ends of their lives.
The words we use matter, too. In another study, out of the University of Pittsburgh, researchers looked at what happened when they changed the way CPR was described. If participants were told that CPR was the norm, more chose CPR. If doctors said that choosing against CPR was in fact the norm, that’s what patients wanted. Shifting language from ‘do not resuscitate’ to ‘allow a natural death’ also changed the participants’ choices.
Faced with a terrifying decision without any history of similar decisions to draw on—after all, none of us has died before—people struggle. Strangers in a strange land, with an array of choices on a page or questions about whether they “want” any one of a horrifying set of technologies, they grasp for guidance in a turn of phrase. They read recommendations into the way we carelessly order options. Perhaps autonomy is a false god—and my goal as a physician is instead to know my patients well enough that I can shepherd them toward a treatment path at the end of life that fits with their overall wishes.