Teen Cancer Patient On-The-Run Stirs Health Care Debate

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LYNN NEARY, host:

I'm Lynn Neary and this is TELL ME MORE from NPR News. Michel Martin is away this week.

Coming up, with the school year ending, many young people are looking for summer jobs but they're not the only ones. With unemployment at a 25-year high, many of the jobs typically reserved for youth are being coveted and filled by adults. More on the summer job squeeze in a moment.

But first, Colleen Hauser and her 13-year-old son Daniel are back home after a week on the run. They had fled Minnesota after a court ordered Daniel to begin chemotherapy treatments for Hodgkin's lymphoma. The Hausers favor addressing the illness with nutritional supplements and alternative treatments. Daniel Hauser is now in protective custody but was allowed to stay at his parents' home under watch by a deputy. Authorities suggest that charges against the parents will be dropped, provided they agree to a court-ordered treatment plan. This case has drawn national attention and reignited the debate over who has the right to choose medical treatment for minors.

For more on this we turn to Arthur Caplan. He is a professor of bioethics and director of the Center for Bioethics at the University of Pennsylvania. And he joins us from his home in Philadelphia. Also with us is Michael Farris, he is a constitutional lawyer and the president of parentalrights.org. It's an organization that defends rights of parents to raise their children as they see fit with minimal government influence. He joins us from his office in Purcellville, Virginia. Welcome to both of you.

Professor ARTHUR CAPLAN (Bioethics, University of Pennsylvania): Good morning.

Mr. MICHAEL FARRIS (President, Parentalrights.org): Good morning.

NEARY: Professor Caplan, let's start with you. Now in this case Daniel Hauser suffers from Hodgkin's lymphoma and as I understand it, the survival rate with chemotherapy treatment for that is about 90 percent. So why would a parent's belief system carry any weight in a case like this at all?

Prof. CAPLAN: Well, parents do get tremendous discretion to raise their kids, to do what they believe is best for them. It's in a rare situation that you wind up trying to override that. And this is one of those because like influenza and diabetes, antibiotics, and meningitis, chemotherapy really works well on this particular form of childhood cancer, 90 to 95 percent success rate, survival out at 80 percent in 10 years. So yes, parents can do as they wish most of the time but they can't do things that are going to lead to the immediate death of their child.

NEARY: Now how much influence does the child get? Any influence at all?

Prof. CAPLAN: The child would have some influence. Basically you're looking at a situation where the closer you get to the legal age of consent, to 18, you have more input from the child. But Daniel Hauser has learning disability. He can't read. He has a lot of cognitive impairment. So, he is almost a special case. He can't really make his own views known.

NEARY: Michael Farris, let me turn to you, how do you interpret the ethical obligation of doctors versus the parents right to refuse treatment or to decide treatment?

Mr. FARRIS: I think that the balance should be heavily weighted on the side of the parents. But I do believe that the judge made the correct decision in this particular case. That with a life and death situation and there is no viable alternative treatment, the parents had to come up with a plan that was nearly as successful as chemotherapy. And, you know, this was a different way of accomplishing the same thing. I think that the deference should have been given to the family.

But in this particular case, you know, this is the kind of the thing where the government does have the ability and does have the right to intervene. Unfortunately what I see going on is the government intervening in cases, and doctors intervening in cases that are a lot less dramatic than this and a lot less worthy of government intervention or doctor intervention.

NEARY: Doctor Caplan, other than a life or death situation, at what point would you say that authorities should intervene when a parent refuses treatment for a child?

Prof. CAPLAN: Well, when you try to look at four dimensions. How imminent is the death or severe disability going to be to the child? Is it something that is going to take place within the next month, two months, three months or we are talking about something that might take years and years? There are parents, for example, who refuse HIV treatment for their kids and most doctors may push and might even try to go court, they usually don't win those. The kid usually goes without the HIV treatment, although it can imperil their lives but it's not imminent.

You also are looking, as we said, at the age of the child. So if they have something to say at 17 years, 11 months and 29 days, you're probably listening more closely to what they might want. Is there an effective treatment? So insulin, diabetes, that really works a hundred percent of the time, we know we can treat it. If you're in a diabetic coma, you got to do something right away. Parents who don't do that are going to get court-ordered to do it and I think that's right.

Then the last dimension is, what do you do in terms of the alternative proposed? Ionized water and sweat lodges are not going to do anything for cancer. Even Native American people, who Dan Hauser's parents claim to be inspired by, say that's not the way to go with the cancer. So they're not proposing an alternative that has any efficacy at all. You take all those dimensions together, that's how you sort of weigh when you are going to intervene.

NEARY: How do you interpret this, Michael Farris? When would you say was the moment where the government might have a right to intervene, other than a life or death situation? Or is there no - if life or death is not involved, do you think that the government shouldn't intervene at all?

Mr. FARRIS: No. I again agree with what the professor has just said, in fact his criteria sound rational and reasonable to me. The - I think that you need to be able to intervene where there is a serious - I mean, the legal standard if there is a compelling governmental interest. That's not the terminology that science uses but that the law uses. And it's something that of the highest order is not otherwise served. And if the child is going to lose a limb, if they're going to be impaired for life, if there is some very serious thing. The example that I would give to the contrary is the situation that happened in Tennessee in April, where a father took his 13-year-old son to the doctor for a prescription drug interaction. And the doctor took the father's side, asked him if he could do a test on the son for illegal drug use and the dad said, sure.

But when the test came back, citing the HIPAA regulations on privacy and the doctor's own judgment, he just refused to give the father the result. And there was nothing to do with parental abuse or anything of that sort. Parents are getting taken out of the loop in so many decisions and, you know, if anything spoke to the life or death situation of that boy, he needed to have his parents know what was going on with illegal drugs, so that they can intervene and help. And yet they were being shut out. So, that's typically what's happening but I have no quarrel with the professor's criteria.

NEARY: If you're just joining us, you're listening to TELL ME MORE from NPR News. We're speaking about a parent's right to refuse medical treatment with Arthur Caplan. He is director of the Center for Bioethics at the University of Pennsylvania. We're also joined by Michael Farris, a constitutional lawyer and the president of parentalrights.org.

Mr. Farris, as we mentioned before, you know, sometimes a disagreement over treatment is based on religious beliefs, sometimes not. Does the religious argument hold more weight in court?

Mr. FARRIS: It shouldn't. From the legal perspective, even though I've defended religious liberty cases for 30 years, religious liberty should be treated under the fundamental rights doctrine, which requires a showing of the compelling interest. Parental rights also are a fundamental right and should receive the same level of treatment. So it gets consideration but it isn't a final trump card. There's always the ability of the government in the very severe case to overcome it, when there is interest of the highest order and this chemo case certainly fit that bill.

NEARY: Professor Caplan, these kinds of refusals come up periodically, as you mentioned, for religious reasons.

Prof. CAPLAN: Hmm.

NEARY: Also for sort of straightforward, you know, differences of opinion about the best course of treatment. And another example that's been in the news lately is parents refused to get their children - small children immunized.

Prof. CAPLAN: Hmm.

NEARY: Are the same principles involved in that debate or is that a completely different kind of situation?

Mr. FARRIS: It is a different debate. It's an interesting one, but it's a different one. You know, vaccination is going to prevent something from happening. Nobody's in immediate danger of measles or mumps or diphtheria. You're certainly increasing the odds that you or people you come in contact with are going to get it. But from a public health point of view, we have built in exemptions by law letting people refuse vaccines. So it's hard to compel a vaccination when you've made an explicit exemption within the state laws. And parents usually invoke those and that's how that happens.

You can argue about whether it makes good sense in the age of swine flu to let people go without a vaccination for some vaccines. But they certainly have their right. I wanted to make a slightly different point when - and this is something that Michael I think was edging toward, too. When you have these refusals of treatment by parents, there is a tendency to want to prosecute them, and you know, this woman ran away with Daniel. I think that's a mistake, Daniel is 13, he's got a lot of cognitive impairment, he needs his parents.

And whatever we think of their choices and I don't think much of them in terms of treating this cancer, I understand why she may have panicked that the chemotherapy is very rough on the child. But put that aside, she - he needs an intact family, he's going to need his mom especially given his particular cognitive problems. So I think you got to realize getting him the chemotherapy is half the battle. The victory is if you can get him the chemotherapy with an intact family.

NEARY: Now in this case it sounds like the resolution, now that they have returned, that the resolution is that they are going to drop the charges but that's still to be decided. Let me ask both of you, all of these kinds of questions, do they have to be handled on a case by case basis or is there a way to legislate these cases when a parent or - to decide for - is it possible to, you know, create a law that would say when a parent or a doctor has the final decision-making power. Mr. Farris?

Mr. FARRIS: I don't think so. I think that you can only enact general principles in law and the general principles should be that parents have a fundamental right to make decisions for their children. And it has to be case by case because there are just too many factors, too many variables. And there is going to be disagreements and it really shouldn't be up to doctors or parents in the final analysis. It's got to be up to judges who are impartial. We take the - going back to the vaccination issue, our youngest daughter ran a 106-degree temperature after a pertussis vaccine. And so, for her three younger brothers, we refused to get vaccinations until they are little older, about three or four years old.

And we ran into substantial interference with doctors. We just said look, we've had a reaction in our family, we think there is an issue here and we're just going to delay. And, you know, we had - I had to fight - in fact, if I wasn't a lawyer who was experienced in these things, I don't know that I would have won some of those fights.

NEARY: Mr. Farris, we are going to have to stop you right there because we're out of time. Thanks to both of you...

Prof. CAPLIN: Lynn, thank you.

NEARY: ...for joining us this morning. Michael Farris is a constitutional lawyer and president of parentalrights.org. Arthur Caplin is a professor of bioethics and director of the Center for Bioethics at the University of Pennsylvania.

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