Jehovah's Witness Kid Dies After Refusing Medical Treatment
LUKE BURBANK, host:
There is a - what was literally a sort of life or death court case that happened this week in Skagit Valley, Washington; that's just north of Seattle.
At issue was whether a 14-year-old boy with leukemia had the right to refuse treatment for his condition based on his religious beliefs. The judge ultimately sided with Dennis Lindberg, but he also said that the eighth grader was, quote, "giving himself a death sentence." And, in fact, a few hours later, this boy, Dennis Lindberg, ended up dying.
And this story raises all kinds of questions about who can refuse, what sort of treatment, at what age? Well, Dr. Doug Diekema is a professor of pediatrics. He sits on the ethics board of Children's Hospital in Seattle, and he's been following the situation. He joins us now. Hi, Dr. Diekema.
Dr. DOUG DIEKEMA (Director, Education Children's Center for Pediatric Bioethics, Children's Hospital): Good morning.
BURBANK: Thanks for getting up at 5:30, Seattle time. Much appreciated.
Dr. DIEKEMA: Yeah, you're welcome.
BURBANK: Can you give us some of the back-story on Dennis Lindberg? He had a pretty complicated family situation, right?
Dr. DIEKEMA: Well, that's my understanding. I had no direct involvement with his case in the hospital, and the family actually hasn't given permission to talk about any of the details of the case, so what I know is, primarily, what's been reported in the media.
BURBANK: I mean, in terms of his parental situation, though, because his - he -his biological parents had gone through some drug problems and had sort of lost or given up custody of him, so he was living with an aunt who was a Jehovah's Witness.
Dr. DIEKEMA: Yes.
BURBANK: Later on, as I read, his parents - his biological parents were very adamant that he receive this treatment, this blood transfusion that he needed to fight this leukemia. His aunt, who then was his guardian, sided with the Jehovah's Witness belief and said, you know, he shouldn't necessarily have that, is that about accurate?
Dr. DIEKEMA: Yeah, that's correct.
BURBANK: How was it exactly that the judge decided that it was okay for this 14-year-old boy and his aunt to make this life and death decision?
Dr. DIEKEMA: Well, I think there were several factors. The judge essentially made what's called a mature minor declaration, which is to say that in his estimation, he felt Dennis was mature enough to make this decision on his own behalf. But I think it's important to recognize that sort of going into that decision as - is another factor which is that this situation was not a one-time give him blood because he needs that will save his life and then we can all move on. He, as a young boy facing leukemia, this was somebody that would require treatment over the course of years, and I think the judge probably recognized that you just can't treat somebody at this age for leukemia effectively without that person's cooperation.
BURBANK: So it wasn't a simple case of - because it happens, you know, with some regularity with people who have different religious beliefs that involve not having medical intervention. This wasn't a one time deal, this was basically for the next three years. This young man and his family - whoever that was - were going to have to have them do this treatment at home, have him come in. It was a real process, and I guess you surmise the judge must have seen that in the future and thought that was part of the judge's decision.
Dr. DIEKEMA: Yeah. That - I'm sure that was a big part of the decision.
BURBANK: What is the rule, generally, when a family has a child and they don't want the child to get medical treatment and the child medically really needs it? Can the state step in?
Dr. DIEKEMA: Oh, absolutely. I mean, the general rule is two-fold. I mean, the first is that we generally give parents or the guardians of children the right to make medical decisions for those children, but it's limited. And the limit, where the state can step in is when those parents or the guardian places the child at significant risk of serious harm. And refusing a blood transfusion in a life-threatening situation clearly crosses that line and courts have - in our country - have, hundreds of times, said that for - particularly for religious reasons, a parent cannot refuse a child life-saving treatment at least on a one-time basis. And things get a little more confused when you start talking about 16, 15-year-olds who have strongly held beliefs as well, but the general rule is fairly clear.
BURBANK: And - but in this case, I guess it was just that because this boy -Dennis Lindberg's guardian was his aunt and she was okay with him not getting the treatment and because he, as a 14-year-old, was considered to be enough of a grownup that he can make this decision, the state just decided that this wasn't the case where they were going to intervene despite the fact that his biological parents really wanted him to get this treatment?
Dr. DIEKEMA: Yeah. And, you know, again, I think the factor here was probably a recognition that you just can't restrain a 14-year-old for three years to effectively treat his underlying disease and an underlying that would require this to happen repeated times and which requires his cooperation to take medications at home and show up for follow-up visits and come in to actually get his blood counts done, and so it's very different than the sort of classic Jehovah's Witness case, which is that you've got a child perhaps who's undergoing surgery and needs blood one tine. I don't think there's any doubt that a judge probably would have said Dennis would - should get blood if this were a one time thing. But I think the complicating feature here was just that, you know, one time doesn't solve his problem, this is going to be happening over and over again.
BURBANK: So we've got a 14-year-old boy who died this week of something that was medically pretty treatable and had a pretty good survivability rate. You're an ethicist, was the right thing done here morally and ethically? I mean, a 14-year-old kid is dead.
Dr. DIEKEMA: I don't know that there's an answer to that question. I think this was a tragic case. I feel, as many do, that this was an unnecessary death; that it was a tragedy for this young boy, and it's a tragedy for his family members. On the other hand, I see the other side of the coin which is that you really can't effectively treat somebody of this age without their complete cooperation when you're dealing with something as complex and is, you know, toxic as chemotherapy for cancer. So I think the judge was in a truly difficult position, and I think Dennis' doctors were in a truly difficult position, and I don't think what they did was unreasonable, but it clearly was tragic.
BURBANK: Has this been the main topic of discussion with your colleagues, people who also look at medical ethics? Is this what everybody's talking about?
Dr. DIEKEMA: Yes. You know, this case, I think, generates a lot of interest in large part because it is, it does have these complicating elements: the adolescent who has strongly held beliefs that are separate in some ways from his caretakers, and the complexity of the treatment, the fact that it's not once but many times that this would have to happen over the course of years.
BURBANK: As an ethicist, do you take kind of a long view on these things? Because for me, maybe because I'm a parent of a 13-year-old, I just say there's a 14-year-old kid dead - this is an unbelievable tragedy; something should have been done. But in the long view, is there an ethical principle that was upheld here that was more important than just one person's life?
Dr. DIEKEMA: Well, I think so. I mean, and you know what, to say we take a long view can be interpreted a couple of ways. I mean, I would say, you know, one way to take a long view on this case is to actually look at Dennis specifically and say what would this have looked like if we had transfused him, if the judge had said, go ahead and do it. Now the problem you have is next week, Dennis and his family are furious; they are not cooperating with medical care. Three months from now, he may still die from his leukemia; only now, he's dying, feeling as if he's going to hell. And so there is - there - it's not as simple as saying we could have saved this life and we didn't. It's that we could have saved his life and made his remaining life much worse for him and actually done him harm. So it does get complicated, and it's hard to know, you know, whether he would have been better off or not.
BURBANK: This kid just had an incredibly tough deal from the get-go: parents, who were drug addicts and then all of the medical problems, so it was - it's a sad story, I think, anyway you look at it.
Dr. Doug Diekema of Children's Hospital in Seattle, thanks very much for talking to us.
Dr. DIEKEMA: Thanks.
STEWART: It was such an interesting - to listen to the doctor lay out the difficulty between the sadness of the story and then the medical ethics and that was really interesting to talk about how the last days of that boy's life had he made - the decision been made for him.
BURBANK: I just - I can't imagine how people who are doctors and people who look at this stuff all day long deal with these incredible tragedies that happen to individual families. I don't think I could handle that.
BURBANK: Just thinking about how much time thinking about it.
STEWART: We need to put that article online so people can read it and...
STEWART: ...think about it for themselves.
You've been listening to THE BRYANT PARK PROJECT from NPR News.