y/o who's been diagnosed with Hodgkin’s lymphoma, which is said to be highly treatable with chemo and radiation. Daniel's family is Catholic but also "believe in the 'do no harm' philosophy of the Nemenhah Band, a Missouri-based religious group that believes in natural healing methods advocated by some American Indians." So the family prefers natural healing and feels suspicious about the effects of chemo (and rightfully so).Daniel has quit chemo after one treatment, and he and his mother missed a court appearance, resulting in an arrest warrant for the mother and an order to seize Daniel, put him in foster care, and resume treatment immediately. It's unclear from the news stories whether Daniel himself made the decision, or if it was his parents choice. And even if it was his decision, no doubt his parents worldview is deeply influential on him. Add to that the complexities of whether or not a child can truly grasp the gravity of a terminal illness, can balance the short-term pain of treatment with the loss of years of his life, etc, and you have a very complex case. All the issues of government intervention in parenting, child autonomy, religious freedom, and the power of the medical-industrial complex factor in here in a very convoluted way.
One of the interesting things coming out of this case is the way choice is constructed. Daniel's attorney, Phil Ebert, said "I am very angry that Daniel isn't here. The case from the very beginning was about honoring and respecting a decision, a choice ... we now need to respect the judge's decision." This quote is odd in that it conflates a paternalistic decision made by an authority figure and externally imposed on the individual with that person's individual choice and autonomy. Generally when we talk about choice as a social and legal issue, we're already assuming that an authority figure such as a judge could in fact make a choice for you, but we're questioning whether enforcing that decision would be the best thing for you, or a legal action, or something we want to allow in a democratic society that values personal autonomy.
Another issue that's unclear from the news coverage is the extent to which Daniel is capable of making an informed decision on his own. According to this and other articles, Daniel is illiterate (which brings up other issues concerning religious freedom and parenting) and his family doctor was not given sufficient time to explain to him the disease, the chances that chemo and radiation will work, etc. So this does raise huge concerns that, even if Daniel is mature enough to make a decision of this magnitude for himself, he's probably not informed enough to make a truly autonomous decision.
However, the state's view of medical care and parental obligation is also somewhat problematic here. According to the judge, state law requires the parents to provide “medically necessary care.” But the question of who gets to determine whether a course of treatment is medically necessary or sufficient is not stated. In a government that's so profoundly influenced by the lobbying actions of the medical-industrial complex, conventional western medical treatment will most likely be viewed as the only adequate treatment (another marvelous example of the colonization of the lifeworld by a profit-driven system). And conventional western medical practice is not 
evidence-based, contrary to popular belief. Further, in the worldview of the family, chemo and radiation treatments amount to an assault on Daniel’s body and torture in the long term. Given this view, it's clear that the duty of the parents would be to protect him from treatment and seek alternative therapies.
evidence-based, contrary to popular belief. Further, in the worldview of the family, chemo and radiation treatments amount to an assault on Daniel’s body and torture in the long term. Given this view, it's clear that the duty of the parents would be to protect him from treatment and seek alternative therapies.So I think all these factors combine to make this case very complex and thought-provoking. In my view, it's very difficult to produce an easy answer in this case, as both sides have a number of valid concerns and a number of obvious flaws. I would be interested to hear how others are responding to this. Your thoughts?
At thirteen, I still believed what my parents told me to. Particularly if Daniel is illiterate and does not have sufficient information (based on a doctor's explanation) to make a decision about the disease, I think that his "choice" not to continue treatment is not an exercise in agency at all, but rather an exercise in coercion by his parents.
ReplyDeleteI do think this would be an issue of his autonomy if we thought he was in a position for informed consent and if we thought he was mature enough to understand the repurcussions of his choice. We let kids who are much younger than this transition between genders, after all. Maybe a sort of "child's advocate" could be assigned to interview the child in cases like this to ascertain if the he really understands the choice and if it's a case of informed consent. Then they could advise the court.
ReplyDeleteI think the most compelling issue here is the age of consent. It's kind of random that we lump little kids together with teenagers in the group of people who can't make these kinds of decisions. I agree that 13 seems a bit young, especially in a case where the facts have been withheld from the child. But what if he was 16 or 17 and well-informed? If he had murdered someone you know the DA would be asking the court to try him as an adult. So you can be imprisoned for the rest of you life at this age but not allowed to make any life-altering decisions. It is a bit contradictory for sure.
ReplyDeletei think even allowing adults to refuse treatment shouldn't be allowed if the courts want to be consistent. we do have laws against suicide after all. /sarcasm
ReplyDeleteMichael right. Children by law do not have the "legal capcity" to "consent" and the decision falls into the hands of the parents.
ReplyDeleteNewspaper Rock has blogged about this topic quite extensively, imho. Here's a good place to start- given the subject of the blog it's more about the Nemenhah Band's claims to alternative medicine routed in their perceived Native American origins which are, of course, nowhere to be found.
ReplyDeleteBut I don't believe that this should apply to every person under the age of 18. My point was that we ought to distinguish between teens who are mature enough to make certain kinds of distinctions and small children. So I don't agree with Anonymous that every kid in this situation shouldn't be allowed to make his or her own choice.
ReplyDeletekurukurushoujo,
ReplyDeleteI agree that the Nemenhah Band seems very shady and disreputable. But I don't think that fact in and of itself renders the family's decision invalid. I do agree that if this were a cult in the sense of mind control and preventing contact with the outside world, then it would factor in.
As far as Daniel is concerned, though, his contact with the outside world has been limited (his mom took him and left the doctor's office very quickly once the doctor started explaining the situation to Daniel), so that does factor into his autonomy (or lack thereof), and certainly makes him incapable of informed consent.
And I agree with Michael that if we think teens and children who commit murder can and should be tried and sentenced as adults, which we do at an ever-increasing rate in our country, then we also must view them as capable of making their own choices. That's not to say that I think every child should be allowed to make life-altering or life-threatening choices. But I also don't believe most children who commit crimes should be tried as adults. You can't have it both ways.
ReplyDeleteI like how you take stories like this and separate out the different issues involved. I think it's a very helpful exercise to do that, and it clarifies some issues that would have gotten lost in the crowd.
ReplyDelete