A physician’s reflections with certainty in medicine [PODCAST]

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“Lacking a supreme being in which to place our faith, my wife and I decided to make the most difficult decision of our lives and discontinue life support. I still wonder if we made the right decision, question whether fear made us give up too early, and these chronic doubts cut with the acuity of scalpels. But I also know that certainty is a fading flame in a failing body, and in a godless universe, sometimes a ‘best guess’ is all you have to go on.”

Mukund Gnanadesikan is a psychiatrist.

He shares his story and discusses his KevinMD article, “Certainty is a fading flame in a failing body.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today on the show, we have Mukund Gnanadesikan. He’s a psychiatrist, and his KevinMD article is titled “Certainty is a fading flame in a failing body.” Welcome to the show.

Mukund Gnanadesikan: Thank you.

Kevin Pho: So we’ll get into your article and story in a little bit. First off, briefly share your story and journey to where you are today.

Mukund Gnanadesikan: Basically, I grew up in an upper-middle-class family in the Northeast, in New Jersey. I did have the challenge of treatment-refractory epilepsy when I was young. Thank God for Depakote, because that has changed my life. Ever since I started being able to be aware of how the seizures made me different, I also saw how it creates expectations that in some ways are based in fact and in some ways not.

Kevin Pho: All right, talk more about those expectations. What do you mean by that?

Mukund Gnanadesikan: I think one example was when I was doing med school applications, and the assistant dean of students was sitting in on an interview and was like, “Do you think it’s wise for you, as an epileptic, to be challenging yourself by going to medical school? The hours, the sleep deprivation, you could have seizures again.” And at the time, I realized, OK, she’s basing this on some theoretical group vulnerability, but she knows nothing of me, of my individual case, and so she’s extrapolating without knowing anything. Understandably, I was a little perturbed. That was in the ’90s, and honestly, I don’t know if that question would fly today in today’s employment or interview environments.

And I think there were back then just some ideas of, “Oh, epileptic kids shouldn’t do this. Epileptic kids should be careful.” And again, I understand it. You don’t want the risk of head injury. You don’t want the risk of drowning, which I almost did. But I think what is also true is that a lot of these things can be done. Can you play football? Yes, you can, with appropriate monitoring. Can you go swimming? Yeah, you probably shouldn’t go without a lifeguard. But to hold yourself back is unnecessary caution, I think.

Kevin Pho: Now, how has your history of epilepsy influenced the physician you are today?

Mukund Gnanadesikan: I think one of the things is my personal neurologist was Arnold Gold, who some may recognize from the Gold White Coat Foundation and the practice of humanistic medicine. And so he was really my professional role model. Where others had said, “Ah, there’s nothing we can do,” he didn’t accept that. But he was also very forthcoming when he didn’t know how something would turn out, to be able to say, “I’m not really sure what we can expect.” And so I think that really taught me that it’s OK to not have the answers, and that sometimes that humility is one of the best gifts that we can give our patients, to say, “Listen, I’m helping you, and I know you feel like you’re in the dark, and guess what? I’m in the dark with you.”

Kevin Pho: All right, let’s talk about your KevinMD article. It’s titled “Certainty is a fading flame in a failing body.” Now, for those of you who get a chance to read your story, just walk my audience through it. Share the story of why you decided to share it.

Mukund Gnanadesikan: One of the reasons that I chose to share it, ironically, is only tangentially related to this, which is that in the wake of a rash of mass shootings, a lot of the questions that psychiatrists get are related to, “Couldn’t you have foreseen this? Aren’t there signs? Aren’t there things that are pathognomonic of mass shooters?” And of course, the answer is no one knows. But I think sometimes even we in the psychiatric field get ourselves into trouble by saying, “Maybe it should have been a sign that this person posted nasty stuff on social media.” I’ve been on social media long enough to know that lots of people post nasty stuff on social media, and if they all killed people, we’d have 20 percent less population than we do.

So at the same time, I understand that desire for locus of control, to be able to say, “OK, if I can anticipate something, I can prevent it, and if I can prevent it, I can make the world a better place,” and that makes me feel good. It’s much more terrifying to say there are things that are beyond my control that will happen to the world, that may even happen to me. And so that was one of the things that stimulated my writing of the article.

I started thinking about other instances where people have felt the need to prognosticate and been wrong. I remember a case where I was talking with a patient when I was an intern. It was Saturday, and we were anticipating he was going to go home on Monday. He was in for pneumonia or something similar, and he was perfectly lucid. I was having a talk with him about painting, which was his passionate hobby, and we had kind of been assured that he was going to go home on Monday. I came in on Monday, and he was deceased. That was probably my first interaction with, “Oh, man, wow, we were wrong in a tragic way.”

On the other hand, I’ve had other instances. I saw a horrifically traumatized kid when I was in third year of med school, and the general consensus was, “OK, she hasn’t spoken in a year. Her prognosis is she’s never going to get better.” I came back the next year, and you could not distinguish her from a typical 10-year-old. It was, in the true sense, miraculous. And on the flip side, condemning somebody to a tragic fate, I feel like that’s also not a good thing to do.

In certain situations, if you’re on an oncology service, if you’re on a neurology service treating strokes, if you’re treating renal failure, there are so many times when people will ask you, “What’s the prognosis?” And I think a lot of people feel the pressure to give an exact, “Oh, your husband has glioblastoma, and he has three months.” I don’t think the doctor is necessarily imagining what happens if the husband dies in one month. What happens if there had been plans, they were going to spend the last savings they had, and he dies in six months, and they have no money for three months? People make decisions based on what we say.

It’s become even more true in the internet age, where often people will theorize over the internet and say, “Oh, based on what I’m hearing from you, you should do this,” or, “This is what’s going to happen.” And we have to realize that people present us only the information they know, and maybe not all of the information they have. Based on that, we test for things that we’re targeting, but we may be headed in the wrong direction. We may be looking for a stroke when we should be looking for multiple sclerosis, and years later we come back around and realize, “Oh, that thing on the MRI was an MS hyperintensity. That was not related to anything. That was not a stroke.”

And so I think, admitting to fallibility, on the one hand, with our legal system, I get why we don’t. On the other hand, one thing that I found is patients sometimes want your best guess, but they don’t necessarily expect precision. And if they do, sometimes it’s best to tell them, “Listen, you’ve got prostate cancer. There’s a wide range of outcomes for prostate cancer. I can’t tell you if you’re going to die in five years or 20 years. It’s really difficult. Are there people who die in less time than that?” Sometimes, I think, you have to say, “I don’t know that you can plan your life around this diagnosis.” Or sometimes maybe there is something like glioblastoma, where you should say, “I don’t know how much longer your husband’s going to have, but what I can say is you might want to plan your next few months around the urgency of this diagnosis.”

Kevin Pho: Yeah, so I think that we live in an absolute, binary world, right? And in medicine, sometimes there are just so many shades of gray when it comes to prognostications and diagnoses and treatment outcomes, and sometimes it’s very difficult to convey that to a patient. Because as physicians, and I talk to a lot of doctors, they themselves sometimes want that certainty, whereas medicine sometimes just doesn’t allow it.

Mukund Gnanadesikan: Yeah, and I know personally, I had a scare. My white blood cell count had dipped to, like, 1,700 or something like that, and at the time, the medication that it was due to had not yet been linked to neutropenia. I spoke to a hematologist: “You seem like a pretty healthy guy. Of course, this could be lymphoma.” Way to drop the bomb. And he said, “But it’s a really low likelihood. I’d almost guarantee that’s not it. But if you want to be sure, you should get a bone marrow biopsy.” And I actually appreciated that he phrased it that way, because it was basically him saying, “I’m pretty certain, but not 100 percent certain. If you want the 100 percent certainty, let’s undergo the bone marrow biopsy.” I remember speaking to colleagues who said, “But that’s painful. Why would you do that?” And to me, the psychic pain of having a potential cancer diagnosis hanging over my head is way worse than the momentary discomfort of a biopsy. And thankfully, it was negative, and I could go on with my life.

I know that I mentioned my father in the article. He had a lot of medical problems, but when he developed severe myelofibrosis, the oncologist was like, “We could try this new treatment,” and the hope was that it could give him extra months on his life, maybe reverse the myelofibrosis. And even then, there wasn’t a whole lot of evidence suggesting that it would improve quality of life. In my opinion, if my dad had not had the feelings of obligation toward the rest of the family, he would have just said, “No, thanks. If this is not going to improve my quality of life, I don’t want it.” But because he did feel that obligation to his sons, his wife, and his granddaughter, he was like, “I have to try. I want to be around for my granddaughter graduating from her PhD program.” And there’s always something.

But did it contribute to further problems? We never know about that. Was the prognosis overly optimistic? Probably. And ultimately, was it the choice of the patient? Yeah, I think it was. But the choice of the patient is also influenced by what the doctor says. If the doctor says, “You should do this,” there are very few patients that are going to say, “No, I don’t want it.” And unfortunately, at times there are doctors who will say, “But really, you should.”

I remember seeing that in family medicine when I was a med student. There was a patient who had pretty bad myocarditis, and they wanted to do a surgical procedure which had a slim chance of saving her, and even if it did, her functioning would not have been good. Or she could just basically refuse the procedure, and she would probably die in a couple of days. She chose to refuse the procedure, and they argued with her until she said yes, and she died on the table. That was another example where I was like, OK, were you really being honest with yourselves, as well as with the patient, by saying, “We can save you,” but it’s a very slim possibility?

With my daughter, that was the most personal example of all, because earlier in life she had some staring spells, and with my history of epilepsy, we got an EEG on her, and everything looked relatively fine. But they had said, “If you want to be extra certain, when she’s older we can do an MRI.” And we never did that MRI, and it does haunt me a little bit to this day, because I’m like, if we had followed up and done that MRI, years later, how would that have changed the prognosis? How would that have changed our handling of her life? And would she still be with us today?

On the other hand, the general consensus was that she died of an arteriovenous malformation that ruptured, and the rate of fatal outcomes for AVMs is very low, so the general approach in most cases is watchful waiting. In that sense, I think, OK, so we would have just had this sword of Damocles hanging over us. Maybe our daughter wouldn’t have gotten to ride horses or go swimming or play soccer, and would that have made for a better life?

At the same time, when we got her to Oakland Children’s Hospital, there was this belief that, OK, we got her to a pediatric neurosurgeon. If anybody’s capable of miracle working, that’s the specialty. But from the beginning, they were like, “Oh, this is going to be challenging.” And unfortunately, with the location, they weren’t able to access the bleed while keeping her positioned so she could stay oxygenated and ventilated, and ultimately, that’s the reason they couldn’t do surgery. The next morning, the artificial ventilation was not really working, and the emotional part of me wanted to say, “Yeah, let’s fight. This is my kid. Let’s fight to the end.” The medical part of me said, “Who am I kidding? This isn’t going to end well.” Even though she was eight, if they did manage to save her, it might be to a very different life.

And so ultimately, what I had to think of was, I had to trust the prognosis that was given to me. And I bring that up because it’s something that I think patients should also understand, that a prognosis that’s given to you by a doctor is a best guess, really, and it’s based on mass data that may or may not be applicable to you personally. Somebody might say, “Oh, your hip replacement’s going to last you 12 years.” It may last five years, and that stinks, because then you’re going to have to shell out for more expense and potentially have a worse outcome in the long run. And because of that uncertainty, that’s where I feel like, as doctors, our job is sometimes to acknowledge that this is possibly the worst possible outcome, this is the best possible outcome, and based on what we have, I can tell you if you’re closer to the best or the worst, but I can’t put you exactly on a number line.

Kevin Pho: Mukund, thank you so much for sharing your story, time, and insight. I’m so sorry for your loss. Thanks again for coming on the show.

Mukund Gnanadesikan: Thank you.

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