And now for the bad news. Or maybe. Last week the Journal of the American Medical Association Internal Medicine (JAMA Internal Medicine) published a study on medical futility in the ICU setting. The investigators found that 11% of patients treated in the ICU were receiving futile treatments. Not in itself surprising since doctors have been suggesting this might be the case for a long time. And the study is not even that generalizable since it was one medical center and one group of physicians in one city. The reason the study is interesting is the way in which futility was defined and who defined it.
First of all, futility was judged only by doctors. One can argue that MEDICAL futility is a doctor’s purview, but futility itself is very hard to define and contains a fair amount of judgement based on perception. A family or a patient might not find something futile that a doctor does. A quick literature search does not turn up any studies of the differences between perceptions of futility between doctors and patients or doctors and families. Definitions of futility differ depending on who you ask. In this case, thirteen doctors got together over the course of three months and decided what their definition of “futility” meant in a practical sense. They came up with the following:
1. Futility is when the burdens of the treatment grossly outweigh the benefits.
2. Futility is when the patient will never survive outside the ICU.
3. Futility is when the patient is permanently unconscious.
4. Futility is when the treatment cannot achieve the patient’s goals.
5. Futility is when death is imminent.
I have some issues with these elements of futility, but to bolster my argument I’m going to shamelessly quote a far better expert. In a book called “Health Care Ethics in Canada” there is an excellent chapter on futility called “The problem with futility” by prominent Harvard medical ethicist Robert Truog, whom I have had the pleasure of meeting. He and his co-authors Allen Brett and Joel Frader will help me out.
The first point: burdens grossly outweigh benefits. Judged from a medical observer’s point of view, maybe. But benefits can also be judgements and the perception of burden vs. benefit may be much different to the patient or family than it is to the doctor. “It is meaningless simply to say that an intervention is futile; one must always ask, ‘Futile in relation to what?'”
The second point: patient will never survive outside the ICU. In some cases, patients on ventilators can be discharged to facilities that are equipped to handle them. On the other hand, if you’re on three medications to keep you blood pressure at a near-livable number and your lungs don’t work and your kidneys don’t work and, as far as anyone can tell, they won’t get better, then yes, it’s futile. The problem is that for non-medical people, the “as far as anyone can tell” piece is hard to take. “In most medical situations, there us no such thing as never. Futility is almost always a matter of probability.”
The third point: permanent unconsciousness. OK, I’ll give them that one. As long as “as far as anyone can tell” it’s permanent. This is harder to tell than you might think. “See second point.”
Fourth point: treatment cannot achieve the patient’s goals. This is not necessarily a definition of futility, but a problem of communication and expectations. “The decision that certain goals are not worth pursuing is best seen as involving a question of values rather than futility.”
Fifth point: death is imminent. I don’t need Dr. Truog to help me here. If the death of an 18 year old in a car crash is imminent, you better believe we’ll do everything we can even if the result is death. You can’t use as a defining feature of futility a principle that doesn’t apply in all situations. I will also say that sometimes we are “treating the family” and giving them time to accept the inevitable is as much a part of ICU care as all the bells and whistles.
I agree that futile care occurs in ICUs. I’ve seen it. Until all of us can deal with the uncertainties of medicine and human nature, futility, however YOU define it or I define it, will always be in the eye of the beholder.