How do bioethicists and doctors justify such an astonishing imposition? Futile Care Theory goes something like this: When a patient reaches a certain stage of illness, age or injury, any further treatment other than comfort care is branded “futile” or “inappropriate,” and withheld or withdrawn, either because doctors deem it burdensome on the patient or too expensive. That the patient may want the treatment because of deeply held values, a desire to live longer or on the unlikely hope of medical improvement is not decisive. Doctors and hospitals have the right to refuse service. So much for patient autonomy.
Worse, these interventions are withdrawn precisely because they work and extend the patient’s life when the doctors disagree with that outcome. Thus, it is really the patient who is being declared futile rather than the treatment.
At this point, several important points need to be made about futile care:
1. Futility is not a medical determination; it is a value judgment. Treatment is refused based on “quality of life” judgmentalism and/or “cost-benefit” analysis.
2. Futility makes patient autonomy a one-way street. For years, we have been told that patients should state in writing what they want or don’t want in the event they become incapacitated. Futile Care Theory makes refusing treatment binding for patients who want to die, but allows doctors/bioethicists the final say over the care of patients who expressed a desire to live.
3. Futility strips from patients and families the power to make medicine’s most important health care decisions and give it to strangers: That’s precisely what is happening in the Rasouli case.
4. Futile Care Theory is only the first step toward a coming duty to die. Think of Futile Care Theory as ad hoc health care rationing. Once Obamacare is up and running, centralized boards will create cost-benefit bureaucratic boards that could systemize Futile Care Theory into mandatory refusals or outright health care rationing based on patients’ quality of life. Indeed, rationing has repeatedly been endorsed by notable publications such as The New England Journal of Medicine and The New York Times.
Please understand, I am not saying that it would never be right to withdraw wanted treatment. Any one of us can conjure a scenario in which imposing increasingly painful and extreme interventions could cross the line into abuse. But these disputes should not be adjudicated behind closed doors in star chamber-like proceedings run by bioethicists who do not share the values of patients and their families, and who work in institutions with a financial stake in the outcomes. Rather, they belong in a court of law, with the right to press access, cross examination, a public record and appeal.
Moreover, if doctors want a patient to die sooner rather than later, they should bear the strong burden of proof in order to prevail. After all, the point of Futile Care Theory is to impose a form of the death penalty. When in doubt, every benefit of doubt belongs to wanted life.
Wesley J. Smith is a senior fellow at the Discovery Institute’s Center on Human Exceptionalism and consults for the Patients Rights Council and the Center for Bioethics and Culture.