THIS STORY HAS BEEN FORMATTED FOR EASY PRINTING
Perspective

Lingering questions

Is it possible for a child's death to be deemed a success?

(Illustration by Koren Shadmi)
By Meghan MacLean Weir
August 21, 2011

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At the risk of sounding morbid, I’ve recently been privy to several very encouraging conversations about death. Can you put the words “encouraging” and “death” in the same sentence? Is that actually allowed, especially in regard to children? I think so. In fact, I think it has to be that way. Let me explain why.

As a mother and a pediatrician, I know the healthy babies we all dream of when planning our families are not what every parent gets. So, as much as my years of medical training were filled with children who were sick but got better, filled with cases that reassured rather than terrified, there were also children whom we just couldn’t help.

Maybe “just couldn’t help” is the wrong way to say that. Children died while I was a resident. But is it possible that even despite this, we (doctors, nurses, and the myriad other hospital staff) did actually help? Do health care providers need, in the face of those with dire illness, to redefine our markers of success?

We absolutely do.

There once was a little girl who was beautiful and healthy until one day she suddenly was not. Tests revealed she had a universally fatal genetic disorder – the question was not if she would die, but when and how.

The girl declined slowly over many months, and her family and their pediatrician used the time to prepare. They knew she would eventually become so weak that she wouldn’t be able to breathe on her own. Her parents decided against future intubation, knowing that the breathing tube, once in, would probably never come out again. When her lungs started to shut down, her parents planned to let her go, and so filled out all the paperwork that would let that happen.

At home with her family, she died quietly and without pain.

I heard about this girl from her mother, years after she was gone. And the story her mother told was one of love, one of fond remembrance, one in which the sadness of that day still held a kind of beauty. The parents did not have to subsist on hospital coffee, or share elevators with hospital clowns and cooing newborns, or step out of the ER to make phone calls to their relatives while their daughter lay stripped naked on a stretcher, attached to a tangle of wires. They did not have to stop the EMTs from doing chest compressions on her body. Instead, they sat on their couch with their baby girl wrapped in a blanket, and they said farewell.

Recently, I was told the story of a boy I’ll call Paul who came to the hospital, unconscious and barely breathing, and was resuscitated in the ER. His cancer had returned, and there had been no treatments left to try. Paul’s family decided to withdraw care. They wanted to remove the breathing tube that was keeping their son alive, but they did not want to do it in the ICU surrounded by strangers.

Of course they didn’t.

Paul’s mother and father asked whether they could take their son home. The request sounds simple, but it was made complicated by the fact that Paul was not breathing on his own. It would have been easy for the hospital to say no, but what’s easy isn’t always what is right.

The family returned to their house by ambulance, two of the boy’s doctors riding along beside him. They settled in the living room, and the boy’s father played his son’s favorite CD. The doctors sat quietly until the parents were ready. Then they pulled the tube. They gave Paul a small amount of medicine when it looked as if he was in some pain. The minutes passed, quietly, privately. The doctors sat with the family even when it was clear that Paul was gone, and then they went to do their paperwork, leaving his parents to grieve.

Should these two deaths be considered successes? It’s a hard question, but I think in many ways it deserves a yes. But maybe real success will be when these stories are not the exception in American hospitals, but finally become the rule.

It is beyond horrible to lose a child. So is it such an enormous thing to ask that we in medicine make it just a little easier? Make it just a little less about what families have to deal with and a little bit more about what they decide they want?

Meghan MacLean Weir is a pediatrician and the author of the memoir Between Expectations: Lessons From a Pediatric Residency. Send comments to magazine@globe.com.

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