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.

13 thoughts on “The right to fail

  1. I believe that every person has a right to choose what and how much treatment is acceptable. Certainly these decisions are different for each of us. Having elderly parents I see how , when living into one’s 80′s, bonus years , if you will, changes some of the choices made re: healthcare and living accommodations. My parents are living with consequences of previous health related decisions. They have lived during an earlier time when taking responsibility for ones own well being was not the norm. They , for years , relied solely on their personal physicians advice for medication and treatment. The idea that more exercise, a healthier diet, etc. would enhance their lives was an alien idea to them. They wanted the pills and treatments to solve their problems and if these things didn’t solve the issues, it was the fault of the doc., the meds and the treatment. Now in their late 80′s, prolonging their problem riddled lives is not a desirable thing. Sad, I think but their choice. Too late they have realized that pills and treatments are not the only answer. Living a healthier lifestyle , though still an option, seems like a missed opportunity.

  2. One person cannot will another person to succeed. Being American should guarantee people 2 freedoms: freedom to succeed, and freedome to fail. The rest will fall into place.

  3. when that “fail” begins to contribute to public health contagions, no they do not. fools like Bachmann and Jenny McCarthy who insist on false information to deride vaccinations ought to be held responsible for the consequences.

    http://www.wausaudailyherald.com/article/20110911/WDH0101/109110437/Whooping-cough-cases-rise

    http://www.theherald.com.au/news/local/news/general/case-of-the-mumps-recorded-in-singleton/2289358.aspx

    http://www.todaystmj4.com/news/local/129795828.html

  4. Not all doctors make the right choices for their patients. Often times doctors are too rushed, and “miss” far too much, and far too often, side effects of medication can be so great as to be intolerable to the patient and sometimes even fatal. Of course, those in the later never complain. Never forget that 50% of doctors graduated at bottom of their class ……………… A good doctor will be willing to work with a patient and help pick the best treatment on a case by case basis, not insisting that the book is the only choice of treatment.

  5. As a primary care physician, I am now “graded” on my patients’ health by insurers and my clinic. If many of my patients take this course, I will be penalized financially. A certain percentage is withheld from my pay, and if my patients have better blood pressures, cholesterol values and diabetes control than the goals set by the insurers and clinic, then I get some of that money back. In order to concentrate my time on patients who wish to control their blood pressure, lipids, A1c, and to quit smoking, should I be allowed “fire” the ones who prefer to avoid treatment, or the ones who will not quit smoking? I do not dispute a person’s right to not accept treatment, but will those people find a doctor who will accept them as a patient for continuing care? Will a person have to show recent good test results, controlled blood pressure and not be a smoker to find a doctor? Or will those people just use walk-in clinics and ERs when things get bad? Or is the concept of doctors being your punished for your choices be addressed as being flawed?

  6. @ seth a. It’s not always false info. I suffered from a reaction to a vaccine that contained thimerosal (essentially mercury) for roughly six months and nothing could be done for me. It had to work its way through my system. I didn’t believe most of the Jenny McCarthy hype over vaccines until I went through it myself. The fact that we tell pregnant women not to eat fish due to mercury, and then dose the newborn up with vaccines once it is born, is a great hypocrisy. Granted you can ask for vaccines w/out thimerosal but most women aren’t aware of this and their little ones are left to suffer.

  7. After reading the comments here, some additional thoughts come to mind:

    1) When does the patient’s right to make an ill-advised decision infringe on the rest of society? I’m sure you could argue that when these patients lose their good health, they pay the highest price of all – but the rest of us pay too in terms of cost and use of resources. Is this an acceptable trade-off to preserving patient autonomy?

    2) The public health aspect of this is troubling. We generally think of health decisions as being entirely personal but they’re not; many of them have implications for everyone else around us. Is there a difference between skipping a screening colonoscopy vs. deciding not to vaccinate – and if so, how do we decide how much failure we’re willing to tolerate in the name of choice?

    3) There is genuine debate about the value of certain screenings, e.g. prostate cancer screening and carotid artery scans. Some of the more recent studies about antidepressants suggest that medication really isn’t that useful for people with mild to moderate depression. Isn’t there some latitude here for patients to say, “No, thanks” even though the doctor is recommending it? Do doctors and patients always have to have the same goals and values and priorities?

    4) The concept of doctors being penalized for their patients’ choices is fundamentally flawed. At some point the health plans will probably wake up and realize this, but I’m not holding my breath for that to happen just yet.

  8. From the CDC:
    “Since 2001, no new vaccine licensed by FDA for use in children has contained thimerosal as a preservative, and all vaccines routinely recommended by CDC for children younger than 6 years of age have been thimerosal–free, or contain only trace amounts of thimerosal, except for multi–dose formulations of influenza vaccine. The most recent and rigorous scientific research does not support the argument that thimerosal–containing vaccines are harmful. However, CDC and FDA continually evaluate new scientific information about the safety of vaccines.”

    In your typical flu shot there is 25 micrograms of mercury. In 1/2 of a 6 oz can of tuna there is an average of 26 micrograms of mercury.

    I think Anne asks four very valid questions and they all deserve serious discussion without people becoming self-righteous or insulting.

    I tend to come down strongly on the side of individual liberty & choice except perhaps on vaccines because of herd immunity effects.

  9. The problem with guaranteeing the right to make foolish choices when it comes to their health is that it penalizes everyone else. If you want to couch this in terms of freedom, what about my freedom to be free from the consequences of other people’s choices? When you let people do things like not carry health insurance, it means that we can’t eliminate preexisting conditions. That hurts all of us.

    • I forgot to mention people who refuse vaccinations… Even if that person has insurance, everyone on the same health plan as someone who gets sick from a wholly preventable illness pays for that person’s stupidity. I make good choices, and I want freedom FROM stupidity!

  10. I have been a Registered Nurse for 25 years. As nurses we believe that the person is ultimately responsible for their own wellness, so yes, a person does have a right to fail.
    With this right comes responsibility. I do not believe as a society we have an obligation to do whatever is possible to protect or mitigate themselves from their failure. If you have high blood pressure, and refuse to have it treated, are we as a society obligated to pay for your dialysis when your kidneys fail? If you drink excessively am I as a tax payer responsible for providing you with a liver transplant?

    In both of these cases I would say no. With your right comes responsibility.

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