My younger son, the one with Cri du Chat, had surgery a week ago. Since then, he has been pretty miserable. Until yesterday, he had a ventilator that he repeatedly tried to rip out. He cried silently and arched whenever he was awake, even after the ventilator was removed. The doctors have done their best to keep him as doped up as they can consistent with his ability to breathe, but it has not been his best week.

He appears to be doing much better today.

All this has got me thinking about consent. I had to consent to this surgery, as I will have to consent to any medical intervention he will have for the rest of his life. He will never have the cognitive capacities required for decision-making.

We grant adults the right to consent to a surgery out of respect for their autonomy. They have access to their own beliefs and desires. They have a rational capacity. As long as they have the correct information for a medical procedure, they have the right to choose. To impose a medical procedure on someone who does not consent, even if everyone thinks it is the rational thing to do, is paternalistic. So I could not decide for an adult that a given surgery must be performed, because it is in his interest. Only he can decide that.

The whole point of consent is that one cannot really say what someone else would or should do - the person in question is the only one who can say that.

Yet I have to decide that for my son. I can't think about what he would consent to, if he were able. There is no thinking about Edmund being able to make such decisions. First, he is a child. Children cannot make rational choices about their futures. They do not have the information and cognitive structure to do so. If we think about what they would choose if an adult, we are thinking about someone with different beliefs and desires.

And second, Edmund is also mentally impaired. His inability to rationally choose is in his very genetic code. There is no Edmund-who-is-able-to-decide-rationally, and there will never be. He has awareness of his beliefs and desires, but no ability to choose rationally. I have the ability to choose rationally, but I can't do so in light of his own beliefs and desires - only mine.

I have been uncomfortable after surgeries I've had. Probably not as uncomfortable as Edmund is, but I have been uncomfortable. But every time, I knew it was coming, and I was uncomfortable because of a choice I was able to make about my health. Edmund is uncomfortable because of a choice I made. He had no say in the matter, he couldn't request that we give it some time to see if he really needed the surgery. I have to say what I think his interests are.

I choose the food my children eat, the schools they will attend, (at this stage) the friends they have, where they live, the discipline they will receive. Having to choose for a child when one does not access to their future beliefs and desires is always difficult for a parent. But the child can participate more and more as she gets older. Choosing for someone who will never be able to choose has its own unique moral burden.

I hope the surgery really was in his interests. I think it was. But I'll never know for sure. And I wish he could choose for himself.

(Cross-posted at Cat's Cry)


  1. For what it's worth, I still strongly believe that the surgery was in his interest, and that you did the right thing for him.

  2. I struggle with this right now in the much much easier case of deciding and figuring out things for my 11-month-old, who cannot communicate very well yet. It's especially hard that she doesn't know that something that makes her miserable right NOW won't be that bad for long, or has future benefits. I can only project how you must feel.

  3. In one aspect Edmund is a very fortunate boy. He has you who nurtures, loves and cares. You and Edmund have touched my soul and I thank you for that.