Wednesday, May 20, 2009

Your Child is Dangerously Ill; Would You Support Their Decision to Refuse Treatment?

For the past few days, network news has been riveted by the story of 13-year-old Daniel Hauser, the Minnesota boy suffering from Hodgkins lymphoma who has refused chemotherapy and whose parents are respecting his wishes. I’m not certain whether Daniel doesn’t want to proceed due to religious convictions or as a result of how the first round of chemotherapy made him feel. However, the pace has certainly picked up; in short (for those not familiar with the story), a judge intervened in the matter, Daniel and his mother have now disappeared, and an arrest warrant has been issued.

There are two issues that I see here which are troubling to me and which I can’t sort out in my mind: parents respecting the wishes of a child versus pushing for something which could save his life; and the right of the courts to intervene in decisions which should be made by a family. To begin, I can’t judge the maturity level of Daniel nor his capability for making such a decision about his own health; after all, he is only 13, and I can’t recall that I’ve met anyone at that age who is able to tackle such life-changing decisions. His parents are certainly doing what they feel they must in order to support their son. However, I look at my children and try and reconcile the anguish these parents must be feeling between honoring and respecting your child and doing whatever you need to do to save their life.

I don’t have a common frame of reference with those whose religious convictions lead them to turn down medical assistance and instead wait for direct intervention from God (although I do feel that the abilities with which our doctors and nurses have been blessed in order to save lives is direct intervention from God), and as such I’m in no position to judge anyone based solely on that. However, even if I did believe that, how in good conscious – how as a course of loving my children – could I look at either of my daughters during a time where their health is in danger and not want to sweep them in my arms and get them to the best care possible? Isn’t one of the roles of a parent to want the very best of everything for your children, including medical care? Even if one my kids was at a point where they were young enough to be under the age of majority and still decided they didn’t want to pursue medical care, I have a feeling I would have to resort to the “I know what’s best for you” argument and force them. Choosing between supporting your children and doing what you – not they – feel is best for their well-being is a decision I hope never have to face.

At the same time, where does the court system have the authority to intervene on a matter such as this? I know that there are a multitude of laws on the books regarding endangering the well-being of a child, and certainly the parents could be considered to be endangering Daniel by not forcing him to receive treatment. But Daniel made his decision for whatever reason he felt was appropriate, and if by some chance it is as a result of a strongly-held religious view wouldn’t the court’s intervening be a violation of a person’s First Amendment protections against infringing on their religious beliefs?

At its core, I see this situation as it stands today being just a terrible period of fear: a child who thinks he knows what he is doing (even though doctors have said his chances for survival improve to nearly 90 percent with treatment) but is afraid because of the decision he has made; parents who are fearful of the consequences of their supporting his position; a mother and child on the run who are afraid of being caught. And above all, there has to be an overwhelming fear of the potential for this mother and father to lose their son.

I don’t know what I would do in this situation. Do you?


Anonymous said...

This is a tough ethical quandary, and i admit that, beyond scanning article titles, I haven't kept up with this particular drama.

As a parent, the decision as to whether my minor child undergoes a particular medical procedure rests solely upon my shoulders. He can surely voice his opinion, but in the end, I will be the one to decide, holding his hand every step of the way.

As to whether the courts should intervene, that's where things get really sticky. While I'd like to say that no one can tell me how to handle my parenting responsibilities, there just may come a time when I am deemed unfit to make those decisions. There should be procedures for ascertaining that level of fit-ness, and I wonder if those steps have been taken in this case.

Now I'm off to read up on this and try to wade through the crap . . .

Anonymous said...

BTW, I love the music playing while I'm writing. Usually that bothers me, but your selections are soothing, just what the doctor ordered . . .

Kansas Bob said...

Ever read "We Let Our Son Die"? It is the gut-wrenching account of how a misguided Christian couple watched their diabetic son die because they refused to give him insulin thinking that God would heal him. I think that it is sad when these things happen and I have no problem with the govt getting involved.

Nancy said...

I sure hope you never face this, too, my friend.

I think that for someone 13, "Daddy knows best" has to be the right way to go.

I've not followed the story either, other than seeing the headlines, but what I wonder about is the piece about the doctors' saying there's such a strong chance of the chemo's helping. If these are the patient's actual doctors, they have no business talking to the press about the case. If they are paid opinion-givers, then they don't have all of the facts.

You're right, M. It's a terrible situation.