The Case of Justina Pelletier Still Requires Nuance

It's not all that regular that I venture away from the topic of vaccines. I should do it more frequently (and there is one topic I really want to write about if I find the time), but for the most part, I stick to immunizations and the anti-vaccine movement. Now and then, though, I do venture onto other, rather more nuanced subjects. There are certain areas of medicine and ethics that are far less clear cut than whether or not vaccines are safe and effective. For instance, what happens when parents and doctors disagree about a treatment plan for a child? What rights to the parents retain? Can there be questions about who is acting in the best interests of the child? Can a parent's wishes trump their child's preferences?

Two years ago, I wrote about the rather complex case of Justina Pelletier (please read that post for a more detailed discussion of the case at the time). This was a case involving a teenage girl caught between two competing, and controversial, clinical diagnoses: mitochondrial disorder and somatoform disorder. Her story is back in the news, but before I dive into the new developments, some background is in store.

Case of Justina Pelletier Spawns Dubious Legislation

The intersection of science and politics is a very murky area. While science can and should inform policy and legislation, those who try to legislate science can easily find themselves on shaky ground. To say that politicians ought to exercise great care when introducing legislation that affects the scientific enterprise is, perhaps, a slight understatement. That is especially true when they start trying to dictate what science is and is not allowed. It's even worse when the individual politicians behind the legislation have demonstrated by past behavior that they are, shall we say, science-averse.

That's the case with a recent bill that has been introduced into the House of Representatives by Minnesota's Rep. Michele Bachmann. I won't go so far as to say that Bachmann is crazy or insane, as I'm no psychologist and there's no need to pathologize her particular brand of nonsense, but she certainly has shown that she does not understand science and her conception of the world differs quite profoundly from reality. Whether it's on the subject of evolution, climate change, or vaccines, Bachmann regularly gets the facts wrong. Now she's wading into policy governing research by introducing a bill nicknamed "Justina's Law". In a related vein, Rep. Steve Stockman has introduced what he's calling the "Parental Protection Act". Both bills are vague and stand to do more harm than good.

Justina Pelletier to Remain in Massachusetts DCF Custody

Earlier this month, I wrote about the case of Justina Pelletier, a teenage girl who has been the center of a year-long-plus custody battle between her parents (Lou and Linda Pelletier) and the Massachusetts Department of Children and Families (MA DCF). The case has drawn national attention and sparked some rather heated opinions. The majority of articles, blog posts and comments have been strongly supportive of the Pelletiers, with most framing the situation as government overstepping its bounds and infringing on parental rights. Few took a more nuanced approach, sticking to the known facts and avoiding speculation.

For a little background, in 2012, Justina was diagnosed with a mitochondrial disorder by Dr. Mark Korson, Chief of the Metabolism Service at Tufts Medical Center. After suffering a bout of the flu in 2013, with subsequent gastrointestinal problems, Dr. Korson recommended she see her former gastroenterologist, who had moved from Tufts to Boston Children's Hospital (BCH). When she was admitted to the ER, the BCH physicians questioned the mito disorder diagnosis and suspected, instead, that she had a somatoform disorder. Justina's parents disagreed with BCH's proposed psychiatric treatment plan and were going to take her out of BCH to continue her mito disorder treatment. Fearing that this would delay proper psychiatric treatment and result in unnecessary medical treatment that would put Justina at increased risk of harm from the drugs prescribed for mito disorder, the BCH physicians called in the Department of Children and Families, fearing medical child abuse.

Thus began a thirteen-month courtroom and media spectacle. The latest development was announced yesterday, March 25.

The Case of Justina Pelletier Calls for Nuance and Moderation

I've given a fair bit of thought as to whether or not to write this post. I may end up inadvertently offending people who have very firm opinions on the matter. The subject is rather controversial, evoking very strong emotions on both sides of the issue, which has gained national attention. The main problem is that what is known stems predominantly from media reports, with verified facts being unavailable. This is the case of Justina Pelletier, a 15-year-old girl who has been the center of a custody battle for over a year between her parents and the state of Massachusetts. The majority of coverage has taken the side of the parents. Most of the people speaking out do so on behalf of the parents, often quite vehemently decrying the Department of Children and Families (DCF) and Boston Children's Hospital (BCH), which started the ordeal. Articles siding with DCF are almost non-existent, but like their counterparts, take a very firm position based on media reports. Rarer still are measured, nuanced analyses of the story.

The dearth of more neutral approaches, and the vehemence with which people have spoken out about this, prompted me to write. I am not going to make any firm conclusions. I will not take a side. There isn't enough verified, primary source information available for me to do so. Instead, I will summarize the details that have been reported and talk a little about the possible scenarios: that the parents are right and that DCF and BCH are right. It is a complex topic about which I'd like to start a conversation, so feel free to post your thoughts in the comments below, but keep it civil.