Sunday, February 23, 2014

Paternalism: No, Rilly, It's a Bad Idea

Sandeep Jauhar is a cardiologist who has made a few recent contributions to the op-ed page of The New York Times of late, and he's been focused on lies lies lies. Earlier this week he wrote an essay titled "The Lies That Doctors and Patients Tell," which was a refreshingly, and ironically one supposes, honest take on the psychological motivations that can make both doc and patient dance around the truth. Yesterday's offering had the similarly provocative title "When Doctors Need to Lie," and is a meditation on the theoretically counterproductive consequences of what Jauhar calls "brutal honesty" when discussing diagnosis and prognosis with a patient.

I really liked the first essay; this most recent one I find deeply troubling. Jauhar's a good writer, and that talent obscures the fact that he appears to disregard the concept of patient autonomy in its entirety, even though he initially seems to lend credence to the concept. I get the impression that he's being too clever by half, starting out by saying, yes, well, we no longer live in the days where hard paternalism is acceptable, and this is a welcome development...and then he goes on to show an instance of what he thinks is justifiable hard paternalism, even though he never actually makes the argument head on that we should go back to the old ways. To do so would be to invite ridicule and derision; instead, he more or less flaunts his paternalism without calling it such. I don't know whether he's conscious that's what he's doing but it feels creepy, more on which in a moment.

Why do doctors need to lie? Well, some of this has to do with Jauhar's use of that very charged word. Needless to say, the use of that word, especially when attached to a discussion about the profession of medicine, is going to grab people's attention, so there is a bit of hucksterism going on here, especially as Jauhar doesn't really itemize instances of lying. First, he discusses a case in which he chooses merely to hold off on conveying the whole truth of a devastating and probably life-ending diagnosis to a young man at the father's request. Jauhar accedes to the plea, but dutifully notes that "over several days, I eased him into the knowledge of his true condition. Doctors sometimes have to know how to keep secrets."

I don't think this fits the definition of "lying" as understood by most people. Certainly I don't think that's a lie; choosing to "ease the patient into the truth" over a brief period is a common approach and raises issues about tactics more than ethics. But the second case he discusses, while also not really an instance of lying, goes straight to the heart of paternalism--when a doctor assumes the role of someone who knows what's best for his or her patient and makes medical decisions accordingly without consulting the patient. In textbook medicine today, paternalism is largely regarded as unethical, but Jauhar suggests that there are instances in which we should reconsider this:

Even so, there may be a place in medicine for hard paternalism, too. I am reminded of a patient I took care of some years ago. Fifty-something, he had received a stent to open up a blocked coronary artery. A few days after the procedure, while on blood thinners to keep the stent from clotting, he started bleeding into his lungs. He needed to be intubated with a breathing tube or he was going to die. However, I was informed that he had told doctors that he never wanted to be intubated.

Jauhar goes on to note that he was "sure" that the patient would do well after only a brief period of intubation, and lo, despite a rockier course in the ICU than he predicted, he was ultimately successfully extubated and has done well. The essay ends with a pat-oneself-on-the-back moment as Jauhar receives the deep thanks of the patient for having overridden his wishes.

This is post hoc reasoning of the worst sort, and is basically a frank admission that he doesn't seem to give a damn about patient autonomy. The entire point of being bound by professional ethical principles is that they have to be applied even when it goes against one's own preferences. So what that he might be reversed after a brief period of intubation? So what that his problem was transient and, if he could survive the event, there was no reason to believe he might not live for years or even decades afterwards? It's his decision to have a "do not intubate" status, and assuming he made that decision fully informed that there might be grave consequences because of that decision--that is, he might die because of it--it is not for us to think we as doctors know better than him. That's the entire fucking point of patient autonomy.

Jauhar mentions the Tuskeegee Experiment as an instance of ethics gone awry in medicine, and virtually all medical students in the US are acquainted with that dark chapter in the history of our profession. But there's another ethical dilemma that nearly all medical students are forced to grapple with as well before they receive their coveted initials of M and D: that of the Jehovah's Witness who refuses a blood transfusion. The classic case is of a young, otherwise healthy Jehovah's Witness who has experienced blood loss, usually from a trauma; since Jehovah's Witnesses believe that blood transfusions can lead to the intermingling of two bodies, which will cause grave problems on the Day of Judgment (massively oversimplified, with apologies to any Witness readers), they oppose the use of blood transfusions. As I said, nearly every medical student in the US is taught this scenario, and there's very much a right answer here. We are supposed to respect the patient's autonomy, even if it means that the Witness patient will die, even if it means that all they need is to survive through whatever physiologic bottleneck has been caused by the blood loss, and could live for decades afterward. The Jehovah's Witness scenario is not mere ivory tower conjecture, either; several times I've had to have this discussion with Witness patients of mine, and once I had a nail-biting 48 hours as I sat on a Witness in his fifties with severe anemia and moderate heart disease, waiting for a big MI to take him away, though he was placid in his refusal of my initial offer of blood.

Do I think that the theology leading to the Witnesses refusal of blood is misguided? Well, yes, I do. Would I defend my Witness' patients refusal of blood to the teeth? Yes, I would do that too. I do not maintain the corner on the market of wisdom. If my patients want to refuse whatever I have to offer them, and they understand the possible consequences of refusal, then I have done due diligence and it's not for me to judge them, nor is it for me to override their wishes because I'm a doctor. Unless I've badly missed something, I see no distinction here between that textbook Jehovah's Witness case and Jauhar's intubated patient. He just thought he could take matters into his own hands because he knew better than the patient. This is appalling.

In the feel-good happy ending to his essay, Jauhar fails to mention the very high likelihood that there could have been an alternate outcome. The patient could have become ventilator dependent: he mentions that he was intubated two weeks, an exceedingly long time for a person to be on the vent and have a full recovery. He could have had a stroke; he could have developed a pneumonia and become septic, requiring special medications that maintain his blood pressure but can also lead to gangrene of toes and fingers. Would his patient have thanked him so much had he lost the ability to brush his teeth or clean his body? Or has this already happened with one of his patients, and he has chosen to ignore that outcome in favor of the much cleaner scenario in which patients are grateful for the miracles bestowed upon them by angels in white coats, who always know best.


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