About a year ago an op-ed by Arthur Caplan appeared on Msnbc about Daniel Hauser, a then 13-year-old boy whose cancer had taken a turn for the worse. His mother, Colleen, took him and fled from their hometown after a court-ordered X-ray showed a nasty tumor growing in his chest. She could not bear to see him undergo more suffering from chemotherapy and wanted to follow the beliefs of the Nemenhah Band, a group advocating for traditional Native American healing methods. The article also mentioned that Daniel had developmental disabilities that made it impossible for him to read and limit his understanding, so he was not in any position to dissent from what his mother is doing.
The first problem with this case is that Daniel could not provide informed consent. Thus, his parents had the legal right to make decisions for him. We could argue about whether or not parents should be able to make decisions for children like Daniel, but this case is a bit more complicated than that because his father did not support Colleen’s actions. So what should be done when the legal guardians of a child cannot come to an agreement? I believe that, regardless of whether or not parents should be the representatives of their children in health related decision-making, this case called for the impartial intervention of a court. It is also important to answer the three questions that Caplan raises in regard to this case. Is the disease life threatening or likely to produce severe disability if left untreated? Yes, Daniel is likely to die if the tumor is not treated. Is there a treatment proven to be effective and one that would be recommended by the overwhelming majority of medical specialists? Chemotherapy, though a painful and demanding process, is the most effective way of treating tumors as lethal as Daniel’s. And, the last question, can the young patient participate in any way in the decision to refuse care — and articulate reasons for doing so? No, his developmental disabilities prevented him from doing so.
The only two options that remained for Daniel were suffering with a chance of being cured or dying. Even though he was disabled, he was not as disabled as, say, Ashley X. Besides, even if he were, disability does not equate to unhappiness. So, the best thing to do for Daniel was to cling to the hope that he had. He could have yet evaded death.
1 comment:
Nada, I agree with you on the fact that if the parents do not agree about the future for their child, there should be court intervention (in special circumstances). However, I think that in order for the court to have such power, the deciding members should be assisted by a team of medical experts to inform them of what is at hand and the scientific specifics of such a situation. It is always strange when medical/life and death matters become legal matters. To be more specific, I think the court should only possess this power if the parents of the child are divorced. I think the problem becomes even more convoluted when the parents of the child are divorced because then the question becomes: who gets to choose the future of the child? It would be far too complicated to please two disagreeing sides and in my opinion that is the only time that the court would need to intervene. Of course, it should always be proved certain that the child cannot make their own decisions and thus is dependent upon others to make decisions for him or her.
The situation is further exacerbated by the fact that Daniel could continue through chemotherapy and become healthier, despite the apparent agony chemotherapy inspires. And so, if a cure was actually a reality and his mother still decided to reject it, perhaps court intervention would also be necessary in this case. His mother’s beliefs were what shaped her mindset and if beliefs get in the way of saving someone’s life, again, this calls for court intervention. When science and religion mix in relation to one’s existence, science should always take precedence.
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