What Cannot Be Undone: True Stories of a Life in Medicine by Walter M. Robinson

Author:Walter M. Robinson
Language: eng
Format: epub
Publisher: University of New Mexico Press
Published: 2021-01-15T00:00:00+00:00

The ethics consultation team asked the full ethics committee to help deliberate about the parents’ request, and this is when I first heard Luke’s story. I was one of the four hospital ethicists; I had not been on call when the original discussion about removing the ventilator had taken place. But when the question became whether it was permissible not to place the feeding tube, more of the ethics committee members, and particularly the ethicists, got involved.

The challenge for the clinicians and the parents and the ethicists were to fit Luke’s unique clinical status to these somewhat opposing poles of ethical consensus. The clinical facts were unique to Luke, of course. In contrast to almost every other baby, Luke seemed to get no pleasure out of eating and had no distress from hunger. He was not soothed by a full belly and not troubled by an empty one. Luke seemed to have almost no reaction at all to feeding, a sort of indifference that indicated just how damaged his neurologic circuitry was. It is the extremely rare baby who is not soothed by food, no matter his or her condition, and it was hard to believe that not being fed wasn’t a kind of suffering, but those who observed him most closely, even ardent supporters of placing the feeding tube, had to agree that there were no observable signs of distress from hunger or comfort from food in Luke.

The more difficult issue was the severity of Luke’s brain injury. His neurologic deficit was substantially more severe than any child with Down syndrome; in fact, the very thing that makes children with Down syndrome so socially engaging, their openness and friendliness and capacity for relationships, would be beyond Luke’s reach, as he would be immobile, blind, deaf, and speechless. Even in a situation where assessment of quality of life in the future is difficult with an infant, there was no question that Luke’s life would be far more limited than even the most severely affected child with Down syndrome.

The question of Luke’s potential for “relational ability” was a nearly impossible one to assess. In an important sense, this would depend on persons other than Luke. Although Luke might not be very responsive, those who cared for him might come to love him deeply and perhaps read in his involuntary signs more of a connection than was biologically plausible. Many of us knew well of cases of parents of severely disabled children who wrapped their lives around the child, emotionally, spiritually, and organizationally, such that the child played the central role in the lives of the parent and the family. These children were cared for scrupulously and were included in almost every family event, even though there was no evidence to an impartial observer that the child was aware of his surroundings at all. This is the great unknowable of parenting, that love for a child can transform reality into a comfortable and loving fantasy. The fantasy was uncomfortable for some clinicians,

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