medical futility and the ethical flip side

Those who still believe that the rise of the end-of-life movement is solely due to the quest for increased patient autonomy, and that it has nothing to do with cost, need look no further than the issue of “medical futility.” From the standpoint of autonomy, medical futility is the flip side of advance directives and physician-assisted suicide. For medical futility is the issue of what to do about the patient who is demanding care that the medical establishment has deemed “futile” (i.e., extremely unlikely to be beneficial).

For medical futility to have become an issue at all, then obviously there must be reasonably frequent disagreements between the medical establishment and patients as to when medical care is really futile. The majority of these disagreements occur in critically ill patients with little chance for recovery, and typically the treatment in question is very expensive. Furthermore, in most cases that treatment is not absolutely 100% unquestionably futile, but merely extremely unlikely to be effective. Yet, the patient (or the patient’s family) in these cases feels as strongly about not giving up as the patients requesting assisted suicide feel about dying. Accordingly, the patient asserts her autonomy by insisting that “everything” be done.

If autonomy were really the only issue, then the people who stand foursquare behind the autonomy of the patient when urging her to establish an advance directive or when she seeks physician-assisted suicide would also strongly support her when she wants to express her autonomy by asking for more care. But that’s not what is happening. Many supporters of the end-of-life movement are strangely silent on the issue of medical futility.

When autonomy and cost both support the same side of an issue, it’s easy for everybody to say they’re supporting autonomy. It’s only when autonomy and cost are on opposite sides of an issue that we can see what’s really the principle motivator.

The cost considerations of medical futility are not subtle. Every struggling hospital has the facts and figures to show that a substantial proportion of their losses come from taking care of patients who are critically ill and who have relatively little chance of a full recovery. While it’s easy to tell in retrospect how much of that care was futile (the money spent on patients who died was money spent futilely), hospitals and HMOs are extremely anxious to come up with ways of predicting ahead of time which patients are unlikely to survive, and to establish the legal and ethical basis for withholding care from those patients. The money at stake is enormous. In fact, some have argued explicitly that medical futility is the ideal method for covertly rationing health care, because the savings potential is so high.

So doctors, hospitals, insurers and the government are all very anxious to limit spending on futile care. I'm not saying this is unreasonable. We shouldn’t spend millions on futile health care (if we’re sure ahead of time which care is really futile). It’s just that their strong pronouncements supporting autonomy in the other two end-of-life issues makes things a little awkward for them when they come out against autonomy on the issue of medical futility.

Once again, covert rationing and the lack of trust between doctors and patients preclude a solution to this problem. For it is the duty of the trustworthy physician, whose first obligation is to be his patient’s advocate, not to offer futile care. Offering futile care presents the patient with a false choice, a choice that can only raise erroneous hopes, and subsequently keeps the patient from making truly appropriate and meaningful personal decisions. The trustworthy physician understands that giving the patient false hopes in this way, therefore, is itself a violation of the patient’s autonomy. Further, since the physician is trustworthy, the patient accepts his opinion that no useful therapy exists, and moves on to the next phase of her illness. In the healthy doctor-patient relationship, futile care is not offered, nor is it requested.

But this sort of relationship is becoming more rare by the day, thanks to covert rationing. Patients are becoming ever more reluctant to accept the doctor’s pronouncement that there are no useful therapies for their condition. How do they know the doctor isn’t just trying to save money by limiting their choices? They are much more likely to demand that no stone be unturned. And the only way they can be sure that everything reasonable is being done is by demanding that everything possible be done.

The end-of-life controversies – conclusion

The issues surrounding end-of-life medical care are of vital importance both to individuals and to society. Perhaps more than any of the other issues we have discussed in this exposition, the way we handle end-of-life care will determine what kind of a people we will become in the 21^st century.

Insisting on autonomy in end-of-life decisions presents something of a paradox. For what is death if not the ultimate reminder that the right of self-determination is, at best, a temporary gift? Wherever feasible, we should allow the dying person to make decisions about the kind of medical care he will receive during his final days, but for us to declare autonomy the overriding concern during this time ignores reality and calls into question our real motives. (Are we really trying to help the dying individual by insisting on his autonomy, or are we trying to prove to ourselves that, despite all appearances, humans actually do have control of their own destiny?).

Instead of worrying so much about autonomy in the dying patient, we should strive to provide the things that patient really needs – relief from physical and emotional pain, help in resolving remaining issues of family or personal conflict, and spiritual support. We should let the dying person know that he won’t be abandoned, that we will be there for him until the end. We should let him know that, because dying is part of the human condition we all share, the fact of his dying does not make him different from us. We are embracing him, not culling him from the herd. It is by such an affirmation of that person’s continuing importance, and not by coercing him (overtly or subliminally) to exercise false autonomy by taking the easy way out, that we truly honor his value as an individual.

Covert rationing precludes any such trust-based end-of-life care. It destroys the trust between doctors and patients, and makes any solution to end-of-life care that is dependent on mutual trust utterly impossible.

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