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March 24, 2010

In memory of E.N.

Death usually skips over the childrenís hospital. It resides instead in the geriatric unit, the trauma ICU, the cardiac cath lab, the emergency department. As hospitalists, we are intimately familiar with death because, after all, the hospital has become the dying ground for most of us. Despite the incredible inroads of the hospice movement and death-with-dignity organizations, a report from the Agency for Healthcare Research and Quality found that one-third of Americans still die in hospitals every year.

But not in the childrenís hospital. Kids usually get better. Despite the risks of sepsis, meningitis, respiratory illnesses and congenital heart disease, medicine has made such progress that patients with leukemia can be cured, babies born with cystic fibrosis can live longer than ever before, and immunization programs have vanquished dreaded diseases like polio. Yes, there is still a lot of work to do, and it is unconscionable that our country has one of the worst infant mortality rates among industrialized nations. But while death continues to spread its wings, that's at least less frequent now for children.

So when a death occurs in the childrenís hospital, it is both sad and shocking. These are not the expected deaths of old age, nor the sudden deaths of the emergency department. In the pediatric unit, death announces itself as a strange mix of looming suddenness.

We know when someone is going to die. We may not know the exact moment, but we know that it will happen. We may be able to prepare ourselves, even make peace with the inevitable. But when it finally happens, it's still a surprise, the ultimate jack-in-the-box.

When one of my patients died last week, I felt both sad and surprised. The announcement came suddenly: I was at a meeting before my clinical duties started and I happened to run into one of my colleagues, who had spent the night in the hospital and who had coded my patient. She told me, and I was speechless, shocked.

I distinctly remembered seeing my patient the day before, sitting in the hallway, talking with one of his friends and a child-life specialist, those angelic women who work in childrenís hospitals and try to bring some normalcy to children and their families during the chaotic days of hospitalization. I walked by, always in a hurry, saying "Hey, hi!" to him. I found myself thinking that he would probably die soon and that I should spend more time with him, get to know him a little better, see if he had doubts, fears, worries. I walked by and my busy day continued. Those thoughts receded until the next day when I found out he was gone.

I held my tears until later when a dear friend lent me her shoulder to cry on. My thoughts raced to the last moment I saw him and all those lost opportunities to talk. While I remembered the times I had spent with him and his mom, trying to fix him, trying to give him another extension on life, I recalled all the other times I'd raced by his room, unable to stop and chat, just say hi, just talk.

He was old enough, a young man really, to understand. He sent his mom home that night and we wondered if he knew and wanted to spare her his final moments. His heart gave out in the middle of the night. We knew it could happen anytime. We just didnít know it would spring this fast.

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About Ruben J. Nazario, MD
Ruben J. Nazario, MD, is now medical director at Inovalon, a health care data analytics company, and is medical editor for Elsevier's First Consult. A pediatric hospitalist, Dr. Nazario is a veteran of both community and academic pediatric hospitalist programs. All material represents his own views and does not reflect the views of his employer.
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