This transcript has been edited for clarity.
Hi. I am Art Caplan. I’m in the Division of Medical Ethics at the Grossman School of Medicine at New York University in New York.
We have just come out of a conference that was devoted to the ethics of research on children. The question that keeps coming up — and I know many of you watching will — is to what extent are we treating young people as capable of making their own medical decisions?
At one end of the spectrum, it’s clear that if you’re 3 years old, you’re not going to make any medical decisions. On the other end of the spectrum, if you are 17 years and 11 months old and you are in a state or country that recognizes 18 as the legal age of maturity, then you are going to have a large amount of entries in major medical decisions – maybe even some decisions where your parents or loved ones won’t really be consulted if you say you need to make decisions about reproduction or sexual behavior, or if you want to get vaccinated.
I think it’s fair to say that many young people who are mature minors have the ethical right — and sometimes, by the way, even the legal right — at 16 and 17 to be treated as adults. What do we do in the middle, between 3 and 17? How do you manage children in this wide range? Are we saying that until you really reach the age of 16 or 17, you have no contribution?
Well, one idea that comes from the field of ethics and pediatrics is to require children to give their assent, not their consent. This means that you tell the child about, say, research or therapy about what’s going to happen, but he doesn’t have the final say. However, they might be listened to if they found a compelling reason to veto something.
Just say, you need a vaccination, and the child cries and says, “I don’t want a needle. Which does? Myself, I cry a little in front of the vaccination. It’s not really a denial. It’s not even really failing to give consent. It’s just a normal fear and worry that needs to be managed whether you’re drawing blood or doing other things.
It is possible for a child to say at 12 that experimental gene therapy is going to be very painful. The parents really want the child to do it, but the child says, “I don’t want to risk it.
That doesn’t mean they have the absolute last word, but it does mean that you have to listen carefully when they say no – or for that matter, when they say yes – against what a parent or parents might really be convinced is. the right way forward. You are, in a sense, trying to mediate from the child’s point of view – not giving them the last word, but making sure they have a word that needs to be addressed as part of what happens.
I will give you a case that I treated a few years ago. There was a child who needed a third liver transplant after two failures. He was 13 years old. His parents basically said, “You have to give him another chance. We can’t lose our son.” He said, “I’ve been through two. They’re horrible. I don’t really want to do another one.”
As difficult as it was to hear, we finally came to an agreement that he would not have his third transplant because the chances of success were low and the burden of trying to do this massive operation was high. He is dead. His parents finally came to listen to him. Even though he didn’t legally have the last word, we felt he had enough experience. He had been there and he knew enough about it.
I might not have let this young man decide what would be available to listen to music or watch on TV in my house. His taste was not mine, and I think I have a more mature set of aesthetic tastes. When it came to liver transplants, he knew a lot more about what he had been through than me, his parents, or anyone else.
Ultimately, in that tight bracket, when you’re dealing with a teenager or an older child, who isn’t quite old enough to convince you that they’re almost an adult, we’re going to treat it that way. way . As they develop their autonomy and you see their ability to take charge of decision-making emerge, you want to engage them, ask questions about them, and manage their care with their input.
They don’t necessarily have the last word, but I think they deserve to be heard.
I’m Art Caplan from the Division of Medical Ethics at New York University Grossman School of Medicine. Thank you very much for watching.
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