Abstract
The two children were in adjacent rooms. On the left was a little boy with devastating neurologic sequela from an anoxic event at birth. On the right was a little boy with a recent catastrophic brain injury.
On the left, the boy had spent his life in hospitals and rehabilitation facilities. He alternated between being so sedated he struggled to breathe, and being painfully twisted in spasm. Most mornings he lay there sweating and rigid, eyes rolled back, and intermittently choking on his secretions. When his mother came to visit, she would pick him up and cradle him in her arms as she stroked his face and sang to him. He could not see her, and I do not know whether he recognized her or just took comfort in an embrace, but while she held him, his muscles relaxed and his heart rate improved. And then she would leave, and his spasms would begin again.
On the right, the boy had been a healthy toddler until shortly before I met him. His parents were lost in the midst of an awful and profound grief. They kept the room dark, everyone just a silhouette in the gloom. Different paths stretched before them, all headed into landscapes burning with loss. One morning they asked us: would he ever experience joy again? They wept as a neurologist said “no” over and over. All the while, their son sat propped up in his chair—eyes open and unseeing. He would hold your finger if you placed it in his perfect palm.
His family decided to withdraw life-sustaining therapies.
I finished medical training with clear ideas about the range of end-of-life paths that were “good” and “right.” Helping parents be comfortable making choices that emphasized their child's quality of life over their quantity of life felt like a natural extension of my role. But the problem with listening to people's stories is that over time things that were once clear have become muddy. I now understand that even well-intentioned and loving choices—the “right” kind of choices—can make for a life or a death that is very different from what I would wish for my child.
Accepting that kind of moral ambiguity is uncomfortable. I find myself thinking about the family in the room on the right—wondering—if his parents had made a different choice—and walked down the path of medicalization—would they have come to cherish the child he would grow to be? Was their grief over the little boy they had lost blinding them to other possibilities? Or was that grief providing a moment of clarity? If he was kept alive with machines, would they one day sit in his room and hold him, and would his spasms abate and his heart rate improve? Would that be enough?
One morning, we rounded in the room on the left, making some minute tweaks in the little boy's medications, talking about how we might, somehow, someday get him home. And in the room on the right, we stopped the machines and turned off the monitor. The little boy on the right died.
I think that the grief of losing your child may be something akin to fire. If I allow myself to get close—to begin to feel the flames singeing my fingertips—I instinctively pull away. It is an ingrained protective aversion to that which can destroy you. It is much easier to remain at a safe distance, surrounded by cool logic and facts.
But our jobs occasionally require us to navigate through these burning landscapes. To do our work well we have to be willing to get close enough to the flames that we can understand their awful power, yet remain able to guide people through the destruction. And to do our work well we must accept the paths that our patients and their families choose to walk. Sometimes that means saying good-bye to a child in one room, and remaining hopeful for the child in the next one.