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.
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.
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.
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.
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.”