The right to fail

It’s the kind of story that probably makes most clinicians grit their teeth in frustration: An 80-something patient doesn’t want medication for her high blood pressure, refuses to follow the doctor’s advice and ends up on the operating table with a life-threatening aortic dissection.

“Oh, if only her stubbornness hadn’t gotten in the way prior to her surgery,” laments Sharon Bahrych, a physician’s assistant who blogs at A PA View on Medicine and recently related her tale at Kevin, MD.

The patient may very well have been stubborn, or unwilling to listen, or skeptical of the benefits of prescription drugs. But what if she just didn’t want to be on medication and was willing to accept whatever negative consequences might ensue?

The discussion about health behavior is generally couched in terms of what’s best for patients and for their health. The assumption is that patients ought to – nay, must – do everything they can to stay healthy – if not for themselves, then for the good of society. Anything less is considered a failure.

But there’s an interesting ethical question here, and it’s one that often gets overlooked: Do patients in fact have the right to fail?

Most ethicists would say they do. In the United States we value autonomy and the right of patients to make their own decisions, even if those decisions have a negative impact on their health.

This principle can clash painfully with the medical imperative to do what’s in the patient’s best interests. What do you do, for instance, if your patient – a homeless man who’s had a small heart attack and needs a second angioplasty – won’t cooperate?

Dr. Sandeep Jauhar writes about this ethical predicament in a case study that appeared some years back in the New York Times:

He had lost faith in his doctors, and that was all he seemed to care about at that moment. He understood that he had a serious heart ailment, that there were treatment options and that he could die if he left the hospital.

I implored him to reconsider but his mind was made up.

Dr. Jauhar wonders: “How far should a doctor go to make a patient do the right thing?”

If you believe in autonomy, the answer is clear: Even the most caring, well-intentioned doctor cannot “make” a competent adult “do the right thing,” especially if the patient and doctor have differing definitions for what the right thing should be.

It’s not always easy to tell when advocacy on behalf of the patient morphs into medical paternalism. Nor is it easy to know where the line ought to be drawn between respecting patients’ wishes and allowing them to walk off a cliff. Online readers debated this question last year at GeriPal, a geriatrics and palliative care blog, in response to an essay in the Journal of the American Medical Association about the elderly patient’s right to self-determination.

“There perhaps is a case that we sometimes take autonomy too far,” reflected one of the commenters. “On the other hand there are probably cases where we are too quick to label a patient’s decision as irrational, because their tolerance for risk is much higher than ours.”

How important is it to preserve someone’s autonomy when others might be affected – for example, a 90-year-old who doesn’t want to go to a nursing home, even though this may be unsafe and will put a considerable burden on the rest of the family?

And who gets to define what’s “best” for the patient, anyway? A few years ago I attended a community meeting about health care costs and chronic disease management. A couple of the clinicians who spoke were frustrated: They’d developed a diabetes education program that patients could attend for a small out-of-pocket fee and learn more about managing their disease. But instead of taking advantage of the opportunity, many patients didn’t even sign up.

You could view this as a failure of personal responsibility to take care of one’s health. But you could also view it as a choice these folks made to invest their time and money in something else that, to them, was perhaps more important.

There’s an uneasy intersection between autonomy and responsibility, between helping patients make wise decisions and dictating what those decisions should be. I suspect the whole right-to-fail issue will continue to be debated for many years to come.