Human Exceptionalism

Stealth Medical Futility: You Can’t Handle the Truth!

Futile Care Theory claims that doctors and hospital bioethics committees should be empowered to refuse wanted life-sustaining treatment based on their beliefs that the patient’s life is not worth living or too expensive to maintain (or both).  But this flies in the face of patient autonomy, supposedly a prime directive of bioethics theory. 

Over the years I have noticed that autonomy receives the most robust respect in mainstream bioethics when it leads to death, e.g. refusing unwanted treatment (which I support) and euthanasia (which I oppose). But it is impolitic to say autonomy is a one-way street, so futilitarians are always looking for ways to justify withholding treatment they don’t think should be provided without getting their metaphorical hands caught in the cookie jars.

Latest example, an article in the Journal of Clinical Ethics, arguing that doctors could simply withhold information that patients or surrogates need to make an informed choice about life-extending treatment. From, “A Different Approach to Patients and Loved Ones Who Request “Futile” Treatments,” by Edmund G. Howe:

…[T]here may be situations in which the usual logical” ethical priorities may not apply because most patients, as human beings, couldn’t bear the result. Generally, our “lesson” in this,then, is that when care providers face an ethical conflict, they might do well to always start with considering a patient’s emotional, human limitations.They may base what they choose to do on their best estimate of what most patients could bear to hear. The alternative would be to ask a patient to hear what is “too much” to bear,which is most likely not going to “work,” emotionally.16 To consider a patient’s or loved one’s emotional limitations is an approach that care providers might consider when a patient or a loved one wants an intervention that the care provider sees as being futile.

Medical “futility” is not an objective concept. It is a value judgment. In other words, the treatment isn’t stopped because it won’t work, but rather, because it will or might–in circumstances where that is not wanted. (More details here.)  In other words, futilitarians want to change the fundamental purpose of medicine away from maintaining life when that is what the patient desires, to only medically supporting lives of a sufficient quality (to them).

So, we have come full circle to the bad old paternalistic days when doctors decided–only instead of forcing people to live hooked up to machines as in days of yore, they will now deny machines when possibly wanted–but only “for the good of the family” (of course):

Most care providers respect patients’ autonomy by telling them that the preferred treatment is futile, There may be a case, though, for increased paternalistic omission, Care providers may tell a patient what they feel the patient wants or needs to know, but stop short of giving the patient advice.

In other words, just don’t do what the doctor doesn’t want to do. And don’t think that such withholding of information needed for informed consent or refusal would be limited to the extremes. Once the principle was accepted that doctors could keep relevant information to themselves–and given their increasing role as cost containment gatekeepers–lying by omission could seep into other areas of care.

Imposing Futile Care Theory by stealth would be even more dangerous than current approaches to denying wanted treatment–which have the virtue of being imposed openly, some might say brazenly–at least allowing families to fight back in court or the media. But imposing futility by withholding relevant information would deny families and patients even that dignity. It would return us to a time when doctor knows best–when you should die. No thank you!

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