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Shielding My Daughter’s Heart

A couple of years ago, I gave birth to a baby girl, Ada. She looked perfect, but the doctors told me she had a significant heart murmur. When I held her in my arms at night I could hear blood rushing through a hole in her heart that shouldn’t have been there.

My husband and I took Ada to a pediatric cardiologist, who said she would probably need surgery to close that hole. For an entire year of tests and hospital visits, we lived in fear that open heart surgery was just around the corner. And then one day it was. “It’s time,” the cardiologist declared, “That hole is dangerously impeding her growth.”

Was Open-Heart Surgery Necessary?

I am grateful to live in a time and place in which surgery—even surgery on a heart the size of a golf ball—is an option. This kind of procedure has undoubtedly saved many lives. But it’s not without risks. More than 100,000 people die in this country every year from preventable medical errors. And hospital infections are a serious problem, too. We didn’t like the idea of subjecting a life so new, so tenuous, to a procedure of such magnitude unless there was a clear case for it. I’m not going to sugar coat this: We were talking about sawing open my baby’s ribs and stopping her heart and lungs.

Your Doctor Cares (No, Really)

Today would have been easier if I did not give a damn.  Easier if patients were clients.  Easier if medical advice was causal suggestion.  Easier if I believed that patients were solely responsible for their health.  Easier if suffering was not real.  Much easier, if I did not care.

However, despite the popular movement from “the doctor knows best” towards shared decision-making, I feel responsible for my patients.  What happens to them is very important to me.  I mean this not as an objective definition of a doctors  “job.”  I am talking about the personal love of a caregiver for his community.  Therefore, while I respect the freedom of each patient to control their own future, sometimes when they exercise that right it hurts.

First, there was my patient who received multi-agent complex chemotherapy and then vanished for three weeks.  Despite severe mouth sores, fevers, rapid weight loss, numbness of his feet and daily vomiting, he did not call.  He had attended chemo class, had received written instructions, and had at least six emergency phone numbers (and my email). Nonetheless, he did not reach out. On one occasion, one of my staff even spoke to him by phone and he did not mention the disaster.  He just suffered and deteriorated.  Now, I need to stop his treatment and can only try to salvage what remains of his frail health.

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