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‘I only wanted my kid to get better,’ doctor explains

Suzanne Koven, a primary care internist at Massachusetts General Hospital in Boston, recalls the panic and fear she experienced when her son was diagnosed with unexplained epilepsy as a small child.

Unless randomized control trials and meta-analyses really pluck at your heart strings, most articles in medical journals likely won't leave you misty-eyed. But a piece released Wednesday by the New England Journal of Medicine all but dares readers not to tear up.

In it, Dr. Suzanne Koven, a primary care internist at Massachusetts General Hospital in Boston, recalls the panic and fear she experienced when her son was diagnosed with unexplained epilepsy as a small child.

"I know how to treat this, in adults. But all I know now is how to hold him, jerking, foaming, soaked with urine," she writes of the scene in the school nurse's office during one of his first epileptic episodes.

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A sense of power or control didn't come back to her, Koven says, until her son (who is now an adult) was successfully treated surgically.

"People ask, 'Is it easier or harder to have a sick child when both parents are doctors?' But this is the wrong question. There is no hard, no easy. Only fear and love, panic and relief, shaking and not shaking," she writes.

The title of the piece is lifted from the nurse's notes Koven peeked at during one of her son's innumerable hospital stays: Mom at Bedside, Appears Calm. It's a poignant reminder that many of the doctors (and other medical professionals) we trust do, actually, know what we're going through.

We spoke to Koven from Boston.

It sounds as if, when your son was sick, you didn't expect to feel so helpless. Were you surprised that your role as a doctor was eclipsed?

There are just as many different kinds of doctor parents as they are parents. There are doctors who feel very comfortable prescribing their children antibiotics and managing their kids' illnesses and so forth. I was never in that camp.

So to some extent I wasn't shocked that the mom part was dominant. In retrospect what shocks me – at the time I didn't think about it because we were in a state of crisis management for a long time – was how passive I was and how utterly incurious I was about the pathology, all the things that as a doctor I tend to be interested in about the disease process. I only wanted my kid to get better. I only wanted it to be over.

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I am a little surprised that so much of the doctor way of thinking went out the window.

Have you ever said to someone what was said to you by an ER attending physician: "Mom needs to wait outside."

A couple of years later I ran into that woman and I said, "You were right." In terms of a crisis, an emergency situation, yeah, there are always situations where a loved one has to be ushered out of a room. The whole experience, as well as other experiences in which a family member was a patient or I was a patient, made me hyper-aware of a few things that I wasn't as aware of previously.

Such as?

I work with nurses, I always respected nurses; I never realized how utterly dependent around-the-clock patients and their families are on nurses and how important nurses are. The doctors come in once or twice a day and the nurse really is your lifeline.

A second thing is that when you're anxious and sick or a family member is sick, seconds seem like minutes and minutes seem like hours and hours seem like days when you're waiting for a call back, when you're waiting for a test result. For a doctor it feels very reasonable to call someone back at the end of the day. The patient is literally sitting next to the phone all day. Sometimes it can't be helped, but being on the other side increased my sensitivity about it.

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But the biggest thing was it really gave me a renewed appreciation for primary care, for having one person who is running the show. In my son's case, a lot of different doctors were involved, a lot of different specialists. You really feel at sea. At one point I said to my son's doctor "I need you to drive the bus. Even if there isn't an answer or even if there isn't a cure, even if it's bad, you still need to know who is driving the bus."

And that helped?

The big turning point medically was when a trainee found something on the brain scan and we were just so happy – they called it a 'focus' which was such an emotionally apt way of putting it as well as anatomically. Medically that was the turning point. But emotionally it was when I said to his doctor "I need you to drive the bus" and he said "Yes." There's a wonderful quote by Anatole Broyard who wrote a book called Intoxicated By My Illness, a memoir about his dying of prostate cancer. He has this wonderful passage where he meditates on what he wants from his doctor. He says, "I don't want you to love me. I don't want you to feel my pain. I just want you to brood on me for a while. Or brood on me for five minutes."

Because as a parent or family member it can be tough to digest all the information flying around, let alone use it to make decisions.

In my son's case the diagnosis and prognosis were uncertain so nobody could say what was going to happen next. All parents want to feel that they can protect their kids and control any kind of pain or negative experience. Doctors are used to being in positions of control or illusions of control when it comes to illness. We analyze it, we diagnose it, we prognosticate about it, we treat it.

There was this enormous sense of loss of control, loss of any kind of sense of beginning, middle and end. That in itself was terrifying. And not dissimilar to what many other patients go through.

Does being a doctor in that scenario actually make it worse because you're kind of supposed to be in control?

In some ways you may have more insider access to medical care and so forth but you also know more bad stuff too. Denial is harder. I don't know that I would call it denial, but while this was happening, I never allowed myself to think too many steps ahead. That's advice I still give to friends and patients who are going through scary medical stuff: Worry about getting from point A to point B.

So maybe that was your subconscious kicking in, that being incurious.

That's actually a good way of thinking about it. It wasn't lack of intellectual curiosity in the sense that I became medically unsophisticated. I allowed myself to take in only what I could bear to take in. That's not so different than what other parents and patients experience.

In magazines you read about how when you go to the doctor, you should come armed with questions and you should bring somebody with you as a scribe. That can sometimes be good advice. But sometimes the reason a patient "forgets" to ask a lot of follow-up questions is because they can't handle that much at once.

I wonder whether a more valuable approach is serial, shorter visits, follow-up phone calls. In my case, when we were first told "this is idiopathic epilepsy and blah, blah, blah" I said now what do we do? I was operating at this very basic level because I didn't have the information and emotionally I really couldn't handle much more than "Okay, Mom, this is what you do next."

But our medical systems are built on short, infrequent visits.

Don't get me started. After I broke my arm and shoulder, I came back to work and occupational health forced me for a three-week period to take twice as much time with everybody I saw.

It was the best, happiest three weeks of my 25-year career. It was economically I think much more favourable – I wish somebody would do this study. I was ordering fewer tests. I was ordering fewer labs. I was less antsy about moving things along. I was writing fewer prescriptions.

So much of medicine is about talking. If we talked and listened more we would write so many fewer prescriptions. And order so many fewer CAT scans.

Do you think you have more advice for doctors or parents here?

Obviously most non-doctors don't have a subscription to the NEJM! But I think the intention was that this might be the kind of a piece that would be read beyond a medical audience. I actually think it's more of a mom story than a doctor story.

So, then, are you okay with patients asking you "What would you do in my shoes?"

I like being asked that question. It shifts your perspective a little closer to where it should be, which is the not-entirely medical one. Which is why computers will never replace us.

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