Pyrrhic Victory

According to the Minneapolis Star Tribune, a judge has ordered 13-year old Daniel Hauser to undergo chemotherapy treatment for Hodgkin’s Lymphoma against both his and his parents’ expressed wishes. Diagnosed in January, Hauser initially began radiation and chemotherapy, but stopped in favor of alternative treatments – at which point the doctors filed a child-neglect petition. Noting that five doctors agreed on the necessary course of treatment, the judge ruled the boy to be in need of child protection, stating a “compelling state interest in the life and welfare of Daniel sufficient to override the fundamental constitutional rights of both the parents and Daniel to the free exercise of religion and the due process right of the parents to direct the upbringing of their child.”
71% of readers on the Tribune site voted in favor of the ruling, and they have strong facts buttressing their opinion. According to MayoClinic.com, “advances in diagnosis, staging and treatment of Hodgkin’s disease have helped to make this once uniformly fatal disease highly treatable with the potential for full recovery.” At first glance, then, the decision seems obvious and uncomplicated: a child has a potentially fatal yet easily curable illness, and his parents don’t want to treat him. Worse, they’ve brainwashed him into rejecting treatment and are leading him to his death. Clearly, the state should intervene.
They do have a point. And yet, there are many important subtleties and layers to this dilemma, in particular compelling issues of individual liberty. As such this ruling sets a chilling precedent for personal rights.
First, the ruling appears based on the assumption that life and death decisions cannot be left to the parents if they choose a course not preferred by the state. I would strongly disagree with the judge – it is exactly in such matters that the ‘due process right of the parent to direct the upbringing of their child’ must be upheld. Parents are the legal, moral and spiritual guardians of their children, and they have a fundamental right to raise their children within their particular world view – be it unconventional or unpopular. If such constitutional rights can be negated in a medical case of life and death, are they not made irrelevant? After all, constitutional rights are there to protect us in precisely these types of instances; by comparison we hardly need them in the monotony of every day life.
Parents make many unhealthy and unwise decisions for their children. Critically, we should ask, “What is the definition of abuse?” Rape is abuse, starvation is abuse, and physical beatings are abuse…but after that, it is murky. Will it become ‘abuse’ to raise a child in poverty? To remove an infant from life support? To attempt to deliver a baby with a midwife instead of with drugs? To refuse a blood transfusion? What of selective reduction in a multiple pregnancy? Whether to put tubes in a child’s ears or use chiropractic instead? Will parents be forced to steer their children through a course of heroic medicine instead of palliative care in diseases such as leukemia? What about children with weight –related diabetes – should their parents be arrested for the clear and present danger in which they have put their obese children? If high schoolers experiment sexually as they have done for generations, should parents now be prosecuted? What if they can’t or won’t pay for college tuition – that would affectively cut their child off from a meaningful economic future, which is a type of death. Once a thoughtful person starts down this road, the list of parental quandaries abounds.
So the first issue is one of parental rights and the dignity of the family. There is a pervasive crisis of confidence in our society which assumes that all families are dysfunctional, abusive and neglectful – and that the state must intervene to correct decisions of which it disapproves.
The second is an over-simplification of medical diagnoses and treatments. Having had two family members with the same cancer, I can relate to the difficult decision the parents are forced to make. Based on our outlook on life and a lack of spiritual barriers to treatment, in both instances we chose the invasive method – surgeries to remove the tumors, plus chemotherapy in one and radiation in the other. At least in the latter case, the doctors gave the patient two options: he could operate and then proceed with radiation, or he could simply monitor it, meaning regular tests but no treatment unless it became worse. In the previous case, chemotherapy was required – this was twenty years previous and radiation was not being offered.
I was personally relieved that my husband, the second case, chose the radiation. I didn’t want to have that threat of a disease lurking over our heads, always looming as something unresolved. And yet, before he could begin, we had to sign forms stating our understanding that side effects – in addition to extreme fatigue and nausea- were a substantial risk ‘compared to the average population’ of developing stomach and other soft-tissue and organ cancers. Cancers that are next to impossible to treat. Cancers that could kill him, all because he chose the invasive treatment method for the cancer he currently had instead of taking a “wait and see” approach. It seems simple at first, but it is quite the opposite when the pen is in your hand.
The first case of testicular cancer was my father. With two children at home and one on the way, my dad chose the chemotherapy for the same reason my husband later chose radiation. But it took its toll, nonetheless. Besides losing his hair, he risked liver damage because the doses at the time were substantially higher. The side effects that came later were even worse, with many current and frustrating health problems connected to that course of treatment twenty-some years ago: low testosterone, peripheral neuropathy, and chemo-brain, that pervasive forgetfulness experienced by many survivors.
We will never know with certainty if it was the treatment that saved my husband and father’s life. After all the expense and the pain, we tell ourselves that we did the right thing. But I wonder: had they had this disease today, as a child (and it is a disease that strikes boys in high school), would they have been given the same option to “wait and see”? Or, we they have been forced into aggressive treatment for “their own sake?”
The third issue is one of individual physical integrity and the right to choose not to live. As alienating as this idea may sound, it is a fact of life that none of us are going to live forever. Many cancer patients wrestle with this reality, as it hits them squarely in the face. It should be a fundamental right to choose one’s own path in dealing with a debilitating illness or how to live out one’s last days, if that be the case. Medicine should be holistic and concerned with the health of the entire person, not merely a missile defense system designed to hone in on one of the body’s trouble spots.
Every person should have a right to the dignity of their own person and their own body. It is not an indication of insanity to reject a course of treatment as simply being beyond the bounds of what one individual can- or is willing- to bear. People who wish to live a spiritual life of a different color should be allowed to do so; families who do not feel the same way about the material world should not be forced to act against their own beliefs in order to execute the state’s beliefs in order to prolong the corporeal existence.
This ruling is particularly troubling as we consider geriatric medicine, where patients are repeatedly overruled with the argument that “they don’t really know what they are saying” or “they don’t really mean that” or “they don’t really know what they want.”
It is a dangerous road that we all travel as a society when doctors claim to speak for the “true” interests of a patient – one who is attempting to speak for himself but is opposed to the doctors. A doctor who overrules a patient’s expressed wishes clearly does not have the patient’s best interest at heart. In such cases, the court should defend the patient’s right to self-actualization, not the doctor’s desire to see his scientific outcome bear fruit.
This case is fascinating and terrifying because it presents a story formed from the overlapping spheres of the ordinary citizen’s life: family, parenting, health, religion, and individual rights. Especially in the US legal system, where cases set a precedent for future rulings, we as citizens must question whether this decision is in all of our best interest. While it is a victory for the young patient’s battle over cancer, it is clearly a loss for his personal dignity and liberty. A pyrrhic victory, indeed.