This transcript has been edited for clarity.
Hi. I'm Art Caplan. I'm at the Division of Medical Ethics at the New York University Grossman School of Medicine in New York City.
We are just coming out of a conference that was devoted to the ethics of research on children. The issue that keeps coming up — and I know it's going to come up for many of you who are watching — is, to what extent do we treat 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. At the other end of the spectrum, if you're 17 years and 11 months old and you're in a state or country that recognizes 18 as the legal age of maturity, then you're going to have a large amount of input into major medical decisions — maybe even some decisions where your parents or loved ones are not going to really be consulted if you say you need to make decisions about reproduction or sexual behavior, or whether you want to get vaccinated.
I think it's fair to say that many young people who are mature minors do have the ethical right — and sometimes, by the way, even the legal right — at ages 16 and 17 to be treated as adults. What do we do in the middle, between 3 and 17? How do you deal with children in that broad swath? Do we say, until you're really up toward the 16- and 17-year-old age, you don't have any input?
Well, one idea that's come up out of the ethics and pediatrics field is to require children to assent, not consent. What that means is you inform the child, let's say, about research or therapy regarding what's going to happen, but they don't have the last word. However, they might be listened to if they came up with a convincing reason to veto something.
Just saying, you need a vaccination, and the child cries and says, "I don't want a needle." Who does? I cry a bit myself when facing vaccination. That's not really a refusal. That's not really even failing to give assent. That's just normal fear and worry that has to be managed, whether you're taking blood or doing other things.
It is possible that a child might say at age 12 that an experimental gene therapy is going to be really burdensome. The parents very much wish the child to do it, but the child is saying, "I don't want to take that chance."
It doesn't mean that they have the absolute last word, but it means you have to listen carefully when they're saying no — or for that matter, when they're saying yes — against what a parent or parents might really be convinced is the right way to go. You're trying, in a sense, to mediate by taking into account the child's view — not letting them have the last word, but making sure they have some word that has to be addressed as part of what's going on.
I'll give you a case that I dealt with a few years ago. There was a child who needed a third liver transplant after two had failed. He was 13. His parents basically said, "You have to give him another chance. We can't lose our son." He said, "I've been through two of these. They're horrible. I don't really want to do another one."
As tough as that was to hear, we ultimately came to an agreement that he would not get his third transplant because the odds of it working were low and the burden of trying to do that massive operation was high. He died. His parents eventually came around listening to him. Even though he legally did not have the last word, we felt he had enough experience. He'd been through it and he knew enough about that.
I might not have let that young man decide what would be available to listen to for music or watch on TV in my house. His taste wasn't 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'd been through than me, his parents, or anybody else.
At the end of the day, in that tough range, when you're dealing with an adolescent or an older child, who is not quite old enough to convince you that they're almost adults, we're going to treat them that way. When they're developing autonomy and when you see their ability to take charge of decision-making start to emerge, you want to solicit it, ask about it, and manage their care with their input.
They don't get the last word necessarily, but I do think they merit getting a hearing.
I'm Art Caplan at the Division of Medical Ethics at New York University Grossman School of Medicine. Thank you very much for watching.
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Cite this: Arthur L. Caplan. When Are Children Old Enough to Make Their Own Medical Decisions? - Medscape - Dec 09, 2022.
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