May 18 2009
I’ve written before about clinical trials as one place where “the rubber hits the road,” so to speak regarding the interface between science-based medicine and actual medical practice. Another critical place where an equal amount of rubber hits an equal amount of road is how the medical system and the law deal with the medical care of minors. In the vast majority of cases, parents take their children to physicians ostensibly practicing science-based medicine and, more or less, follow their advice. One of the more common areas where there is resistance to science-based medicine is, of course, the issue of vaccination, which I and other bloggers at SBM have written about extensively. Another issue, which has not yet been touched upon on this blog, is what to do about parents who refuse chemotherapy for their children with curable childhood cancers or children who refuse chemotherapy whose parents either agree with them or are unwilling to do the hard work of convincing their children that they must undergo therapy. Most often, the reason cited by such “chemotherapy refuseniks” is either religion or a desire to undergo “alternative” therapy rather than conventional therapy. One such case, a particularly high profile one, has been in the news over the last couple of weeks. In this post, I plan to discuss the case of Daniel Hauser, a 13-year-old boy from Minnesota with Hodgkin’s lymphoma who, after one round of chemotherapy, is currently refusing further therapy. This case ended up in court (as these cases often do) and led to a decision that is likely to satisfy no one (as these cases nearly always do).
Before I discuss Daniel’s case in more depth, however, let me make one thing clear. From my perspective, competent adults have the right to choose whatever treatment they wish–or to refuse treatment altogether–for virtually any condition. The sole exception that I can think of would be the case of a highly contagious infectious disease, where society has a right to prevent epidemics and, if necessary, quarantine someone who refuses treatment and refuses to avoid interaction with others. Note, however, that the right competent adults to choose whatever quackery they desire should in no way be construed to imply that quacks have any sort of “right” to provide them with quack treatments. The reason is that providing such treatments inherently involves making claims for them that are not supportable by science. In essence, selling such treatments involves fraud, even if the practitioner is a true believer and just as deluded about the efficacy of the woo he is selling as the person buying it is. Be that as it may, if a competent adult wants to refuse treatment and understands the consequences, then I will call him a fool if what he has is a potentially very curable disease like Hodgkin’s disease and chooses bogus (word choice intentional) alternative “cures” instead, but it’s his call.
However, from my perspective (and that of the law in most states) the key to such self-determination is that the person must be informed of and understand the consequences of his actions, and there are three components to this understanding. First, of course, is mental competence; i.e., no serious untreated mental illness that impairs a person’s ability to perceive reality can be present. Untreated schizophrenia, for example, can definitely interfere with a person’s ability to evaluate information. The second is the ability to understand the disease and what the consequences of treatment or doing nothing are. That is why adults with mental retardation severe enough to prevent them from understanding are in general not considered competent to make such decisions. Indeed, it is why parents are expected to act on the behalf of their normal children to make such decisions. Finally, there is informed consent. A person refusing treatment must be told the consequences of his refusal and acknowledge them. Whether he believes what he is told is another matter, but it is not up to physicians to force treatment on someone just because that person doesn’t believe what they tell him, as long as the first two conditions are met.
The conflict arises when a parent decides to pursue quackery for a life-threatening but potentially curable illness for a child or a child refuses therapy. It is on such occasions that society as represented by the state has a compelling interest in overriding the parent’s decision and making sure that the child gets the best science-based treatment available. It is also a situation when parental rights, rights of self-determination, and the legitimate interest of society in protecting children can all clash in a most chaotic and nasty manner. That is exactly what is at issue in the case of Daniel Hauser, as described in a news report of the testimony given in his case:
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