On Narrative and Neurology: A conversation with Liam Durcan

Liam Durcan is the Neurologist-in-Chief at the Montreal Neurological Hospital and Clinical Director of Neurology at the McGill University Health Centre. He is also the author of the novel Garcia’s Heart and a book of short stories, A Short Journey by Car.

I asked Durcan about the relationship between narrative and neurology. Here is part of the wide-ranging conversation that followed.

Liam Durcan - I guess I approach it in a few different ways. As a neurologist I am interested in the generation of narrative, that is, in the neurobiological mechanisms—the language areas plus the emotional part of the brain plus the frontal lobes—that together generate some sort of sequential order out of things. I find that just fascinating in terms of narratives and disordered narratives that we see in neurology. For example, you can have perfect language function and good recall but if your frontal lobes aren’t working, it is sometimes quite difficult to be able to relay history in an organized way. You see that in some patients with frontal temporal lobe dementia.

Also, as a physician the way into any problem is through narrative. You realize fairly early on that you are in the process of translation: translation of the patient’s experience into their history. There can be multiple parallel histories and then you translate that into the history for the medical record, history that you will base investigations, diagnosis, and prognosis on. I think you gain either an explicit or implicit reverence for narrative. Some people have said that it’s on the wane, that we are relying more on technology. There’s a joke that the only question you really have to ask people now is “Do you have any metal in your body?” because you need to ask that before you get into an MR. I can understand that but it’s not just about having the tools but appropriately using them. Not only is narrative important to become an effective clinician in terms of getting the right diagnosis and applying medical technology properly, but I also think it’s probably a key step in the development of empathy.

MST - It strikes me that narrative is probably still more important in neurology than it is perhaps in other medical fields.

Yes, simply because the complaints can be so complicated or protean or vague. Psychiatry relies on narrative even more but we rely on it a great deal. That being said, it’s always interesting, especially in a hospital, to understand how the narrative can be split. One of the things you’ll notice if you see a patient waiting for a test and they’re away from their ward, is that they cannot help but look in their chart. And that’s because they understand that their narrative and the narrative about them are not necessarily the same. And they want to know all the discrepancies. And they have the right to know. I always feel like asking, “Were you surprised? Shocked? Disappointed?”

Rita Charon at Columbia has done pilot projects where she’s had patients keep their own chart, a parallel chart, to see what the major differences were. Sometimes I’ll come out of a patient’s room with the team, and I’ll think, “that went well,” and then I realize through conversations with the nurses, or with the family, that the patient understood nothing. Or misinterpreted or felt that the explanations were brief, or too complicated, or lacked any sort of emotional content. You see all these discrepancies. I think that’s true of any form of communication but when health issues are involved it’s heightened. Especially when there are neurological issues and the ability to understand what’s going on might be impaired somewhat.

Is there anything that you do to try and help the patient construct the narrative about their illness?

You ask them what they think is going on. You can be frank. One of the questions I tend to ask most at the bedside, or in the office is: “What are you most afraid of?” Is it a disease that you have read about on the Internet? Is it independent of disease but the fear that you might need a wheelchair and that would mean you’d have to move out of your house? Is it your relationship with your spouse or how you’ll be seen in the eyes of your children? Do we need to get the children in and speak about it? Sometimes when I’m seeing patients for the first time, and they’ve had sort of a long course, I’ll ask, “What do you understand about what’s going on?” It gives you insight into their level of understanding. Sometimes patients won’t play every card, but it gives you some insight into their ability to understand the narrative that has been constructed around them, and the differences between that and the narrative they’ve constructed for themselves.

What’s the longest you’ll see or follow a patient for?

Usually a consultation is 45 minutes. I’d like to take longer but with things like waiting lists, doctors calling you to see cases… Typically we’ll talk about things in a preliminary way. Sometimes patients do need rapid referral. For example, if the patient has a bad disc in his back, and it’s been there for six months and it’s not getting any better, you might have to refer him to a surgeon. We had a patient in this office once who was telling me (and he was very descriptive about things), he said, “I’ve got this terrible chest pain.” I was with a resident, and I wanted to show the resident that when the patient says certain things, you just have take him at face value. So I walked him across the street to the emergency room. I didn’t actually think he had anything wrong with his heart, but it turned out he was having a heart attack.

Other times, you don’t know what’s going on. You need to find out what the patient’s concerns are, you express your own concerns, and propose some tests to try and understand them. In our system you wait a bit longer for some tests, things like imaging, so you try and give the patient some reassurance that if there is any change, that you’ll see them again. We’ve forgotten the value of the follow up appointment. Visits to the doctor are too often like visits to the accountant, they’re sort of yearly reckonings. But sometimes there are issues that come up and being able to see the patient allays your own fears. And I often find just talking to the patient on the phone can allay their fears.

In terms of follow up, it depends. Some patients I’ll see every two months, others need to be seen every couple of years, depending on the disease process and on the patient’s level of anxiety. I’ll see patients who don’t have a neurological diagnosis but they feel that their muscles are jumping and they are sure they have Lou Gehrig’s disease. You try and reassure them but you know that they have this tremendous anxiety. What you say is “I’ll see you every few months and reassure you,” and as the disease doesn’t progress you try and reinforce that. Most patients after two or three visits don’t need to be seen anymore. If you see them once and say, “It isn’t Lou Gehrig’s bye bye,” they’re just going to see doctor after doctor. I think the value of the follow up is extremely important. Also they trust you if they see you a few times. And sometimes what you thought was not neurologic turns out to be neurologic, so I think it’s a tremendous benefit.

Is that because some of the manifestations can vary so greatly?

Some illnesses are variable by definition. For example, myasthenia gravis can be bad at certain times of the day. Or sometimes the symptoms that the patient feels might be quite pronounced, but you just can’t see objective evidence of it and it might take two to three months to declare itself. It’s the old saying, sometimes you only know you’re in the pumpkin patch in the fall.

Personal accounts of illness that I’ve read seem to focus a lot on identity. Patients are reconstructing their personal narratives to accommodate for their illness.

Absolutely. When we talk about narrative, every person carries three or four. There’s the autobiography, the grand history of yourself, then there’s that moment-to-moment narrative that we’re all judging ourselves upon, and then there’s the narratives that are constructed about you. I find that interesting.

As a physician do you feel that it’s part of your job to help the patient readjust his narrative?

I think you have to be careful, because you can readjust it in a way that just suits yourself. In other words, if I need to get you out of the office because I’m behind and have a full waiting room, I have to ask myself “Am I doing things for those reasons?” You always have to be vigilant about what you’re doing in terms of changing the narrative. Also, the narrative has meaning for more than just the patient. They don’t teach you this in medical school, but there are third parties who are very interested in the patient’s narratives. If you’re filling out Régie des rentes forms or insurance forms for somebody, you have the legal responsibility to be truthful, but sometimes those two narratives come into conflict. I’ve inherited patients who have been given diagnoses have been revised, and I am sure I have given diagnoses that in five to ten years might be revised. That can have a really major impact, not just on the person’s finances, but also on the person’s identity. If you’ve been told you’re not going to get better, you will often attain a sort of sick role, you’ll say I can’t do certain things, I shouldn’t expect to do certain things, and you’ll curtail certain thoughts about what you’re going to do in the next five years. It’s really important to consider that the narrative is not just what’s come before but also the projected narrative into the future. We don’t talk a lot about prognosis but people are constructing their own narratives years in advance as.

Why don’t you talk a lot about prognosis?

Well, I think that we’re not as good at talking about it as we are about diagnosis. If you look at medical charts, the diagnosis has to be mentioned, it’s a medical necessity, but not the prognosis. I’m on the wards right now, and I like to talk about prognosis with people, but I’m sure I’ve probably not had as explicit a discussion as I should have with most patients. What’s the risk of this person having another stroke and was it explained to him? What’s the risk of this person’s multiple sclerosis getting worse in the next five years? I mean, there is an element of uncertainty, and we don’t like to expose ourselves to uncertainty. And sometimes patients aren’t prepared for that, especially when they are in a hospital bed. But in all cases prognosis should be discussed.

What kind of people do you think go into neurology? Is there a personality type?

In medical school they talk about the different personality types that are drawn toward different specialties, e.g., the surgeon is a decisive person. They use to describe neurologists as being bridge players that were interested in sophisticated systems and arcane information—I always found that offensive. It was a way of saying that you were interested in things that have really no applicability to patients’ lives. I think that was insulting to the neurologists of fifty years ago, who were really palliative care physicians. These weren’t cold diagnosticians who walked away; they were people who looked after people.

I don’t know that there’s any clear type. I think you have to have curiosity, but then I think curiosity is important for any sort of endeavor. When we bring people into our program to train them, at the end of medical school, one of the questions we ask is, “How do you feel about most of your patients not getting better? Are you able to deal with that?” That can be tough. We do have people when they see patients getting worse and worse that will view that as some sort of repudiation of their efforts, as some sort of ego destroying event. But I think if you take a larger view of medicine, most of what we do is palliative, aside from treating a few infections and taking out the rare inflamed appendix. We’re moving curves, we’re delaying events, and we’re trying to prevent things. And I think once you understand that, you have a deeper understanding of medicine, the pursuit of neurology doesn’t seem full of despair.

When did you start writing?

I’ve written since my teenage years and then I put it away for medical school. I finished my residency when I was 28 years old. I was a qualified neurologist but I felt grossly unprepared in some larger sense to look after people. I felt like I needed more of a liberal arts education at that point in my life. And I think that I probably began writing for that reason, to try and address some of that. I think part of it was also emulation—I love reading and I love well-written prose, it gives me a tremendous amount of pleasure.

How do you find the time to write?

It was easier before. I would get up at four in the morning and write for an hour and a half. After the second child, it was a bit more difficult. Thomas, our youngest, was born in 2008, and there was just less and less time. Also, I have just taken on a few more administrative duties in the last couple of months that have made any sort of pretence at writing more difficult. I used to think that having a limited amount of time to write was conducive to writing and I still do. I deal better when I have constraints than when I have absolute freedom. If I had a week off, I don’t think I would write, but if I had 30 minutes a day, then I would. I remember commuting and writing on the suburban commuter trains. I found that really concentrated my writing. And I found that the individual plot issues or story issues that I was concerned about would seem to have been addressed in the time when I wasn’t thinking about it and I was interested in that. It seemed to work for me. I published a fair bit in a few years. When I wrote a book, I think I had been thinking about it for a long time, because it didn’t take that long to work the book into shape. It was almost a bit embarrassing—it just seemed to happen fairly naturally.

Why did you choose to make the main character of Garcia’s Heart a neuroscientist?

When I started writing, I thought there is no way I want to write medical narratives. I thought if I write, I just want to be a writer, I don’t want to be labeled as the doctor/writer. I wanted people to read the book and be refreshed that it wasn’t a narrative in a hospital. The one lament I had about the book is that I couldn’t make it work any other way. I really hesitated at every step. The story didn’t start with a person interested in neuroscience, it started out as a short story about a person who works in a Dépanneur, for someone who used to be a doctor. (It was originally set in the 1980’s, with a Vietnamese doctor.) As it got bigger and bigger, I realized that he would have to identify with him in a professional way, so he had to be a doctor too. Then as I was writing, I was thinking about theories of moral responsibility and who can best understand these ideas on an intellectual level and yet be baffled on an emotional level, and I ended making the character essentially a neuroscientist. I didn’t want to write it that way, but I couldn’t see any way out of it. So I ended up writing a narrative about a disaffected doctor who wasn’t practicing medicine. That was the saving grace.

But it’s interesting, especially for those of us who aren’t neuroscientists. One of the things that struck me was the way Patrick sees things, how he sees the world through the lens of neuroscience. Is that partly how you see things?

Well, no. I think that’s the bias that we have in medicine and in neurology. We’re necessarily materialistic and reductionist. We deal with understanding function through dysfunction, which pushes us in that direction. That being said, I wanted the character to have very sophisticated technical and material understanding and yet be completely baffled emotionally. I mean he was not only baffled, he was miserable at his inability to figure things out. I wanted to make that point, that things have to be understood not just at an intellectual level but also at an intuitive level.

He comes across as a stereotypical scientist – he knows a lot about the world but doesn’t know why his relationships failed.

Or how to think about this person. I think that’s perhaps that’s how I felt when I finished my training, and I was trained by very humane people and in a curriculum that I don’t think meant to produce a person who felt the way I did. But I just felt that I was missing something. By the end Patrick comes towards that understanding, and I think he’s more satisfied in certain ways. Not to say that I think I have achieved that—I think it’s always a process, a continuing process.

We know more about the brain than we used to and there is starting to be a cultural resonance of what’s happening in neuroscience and medicine…

I think there have been huge cultural changes in terms of the acceptance of neuroscience or the understanding that the principles of neuroscience and neurobiology can be very interesting and can, not replace, but complement things like psychology. I also view neuroscience as being at that point that genetics was 15 years ago, when they said, “This is going to explain everything.” We do the genome: we’ve got the answer. That simply hasn’t been… it’s just more complicated than that. That hasn’t lessened the importance of genetics it’s just that we have a more nuanced and sophisticated understanding of it. And I think you’re seeing the same thing now in neuroscience. We’re going through a phase of “neurocracy” and the skeptical backlash against it, which I think is healthy. There’s been a great deal of wariness about how to apply what we know about neuroscience to our concepts of law or public policy, and I think people are beginning to understand that it can’t define things but it can complement our understanding.

[This interview has been condensed and edited for clarity.]

posted by Maria Schamis Turner @ 7:03 PM   3 Comments


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