I like this Seth Roberts blog about a RadioLab broadcast called “The Bitter End.” It’s about the information advantage doctors and nurses have about end-of- life decisions that most patients don’t have, or probably want. Most doctors and nurses want to slip away if they’re in a difficult end-of-life situation. No heroics, just some pain management.
Below, I’ve abridged some of Seth’s blog for brevity and clarity (for me at least).
… there’s a dramatic difference between how doctors want to be treated when they are near death (no CPR, no ventilator, no dialysis, no surgery, no chemotherapy, no feeding tube, no antibiotics, nothing except pain medicine) and how the general public wants to be treated (CPR, ventilator, dialysis, surgery, chemotherapy, feeding tube, antibiotics, and so on).
The RadioLab guys learned that the big differences exist because all those medical procedures (except pain medicine) have much worse outcomes than the public is told. The doctors know about the bad outcomes. It’s better to die, the doctors decide… it’s clear most people agree to these procedures because of ignorance.
… If end-of-life doctors told the truth, they’d have a lot less work.
The RadioLab podcast hints at the moral retardedness implied by this practice in an interview with a medical student, whom I assume was randomly chosen. Why aren’t people told the truth? the interviewer asks. “I don’t know how to communicate that effectively,” says the student. Then he communicates the truth quite effectively. Why don’t you say that? asks the interviewer. People don’t want to hear that, says the student (changing his answer). They don’t want to, but they need to, says the interviewer. The student says it would be “presumptuous” to tell them the truth…
The comments on the RadioLab website suggest that doctors fail to grasp there is a big problem. Many commenters to the radio show are doctors. Some agree with the facts in the program. None expresses even discomfort with the situation. One commenter is Joseph Gallo, the Johns Hopkins medical school professor who runs the study that revealed the enormous difference between what doctors want and what the general public wants. Gallo said “I would add that studies that have asked nurses about their end-of-life preferences have found similar desire to limit care.”
I’d guess most doctors and nurses don’t feel comfortable telling patients what they would personally do in the same situation because of the perception that patients want all the possible life extending options based on the “quantity” of life that can be eked out, rather than the “quality” of life patients can have by just slipping away.