When a Canadian man named Hassan Rasouli suffered complications after brain surgery, his doctors wanted to pull the plug. But his Muslim family said no. It was against Hassan’s values, and moreover, they believed he showed signs of improvement. In any event, they wanted him to be able to continue to fight for life.
But that didn’t end matters. The doctors claimed that continuing treatment was “futile” because he would never get better. Moreover, they announced they intended to stop all treatment except for comfort care — regardless of the family’s desires or their patient’s personal values — an example of what is known in bioethics as “Futile Care Theory” or “medical futility.”
The case ended up in court. Justifying their desired imposition on the family, the doctors testified in a written affidavit: “It is as certain as anything ever is in medicine that he will never recover any degree of consciousness,” Wrong. Hassan later woke up and became reactive to the point that he can now give a “thumbs up” when asked how he is doing.
Despite this, the doctors are still conducting tests to determine whether they remain committed to stopping his treatment. Further, they have asked the Canadian Supreme Court to grant physicians the general legal right to refuse wanted life-extending treatment. If they prevail, it will mean that extending life will cease to be considered medically “beneficial” — even when that is what the patient and/or family wants.
Some might snort derisively and think, “Well, that’s Canada with single-payer health care. That’s what happens in socialized systems.”
Not so fast. Futile Care Theory has been pushed quietly by bioethicists in this country for years. Indeed, many, if not most, hospitals have promulgated some form of internal futile care protocol. Not only that, but many states — most notably Texas — legally grant hospitals the statutory right to refuse wanted life-sustaining treatment.
This is how the Texas law, seen as a model by many futilitiarians, works: Under the Texas Health and Safety Code, if the physician disagrees with a patient’s decision to receive treatment, he or she can take it to the hospital bioethics committee. A hearing is convened at which all interested parties explain why they want or don’t want treatment to continue.
If the committee decides to refuse treatment, it is determinative. Even if the family finds another doctor willing to provide the treatment, it can’t be done in that hospital. At that point, the patient/family has a mere ten days to find another hospital willing to take the patient, after which, according to the statute, “the physician and health care facility are not obligated to provide life-sustaining treatment.”
In practical terms, that’s a death sentence. The economics of medicine have changed from the old fee-for-service days. Today, extended care in ICUs is usually a money loser for hospitals, meaning that families find it almost impossible to find a facility willing to accept the transfer of expensive patients whose care has been declared to be “futile.” There are even reported cases of desperate families looking out of state for a facility willing to provide treatment for a loved one about to be pushed out of the lifeboat by a Texas hospital.
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.