I didn’t know much about 15-year-old Justina Pelletier’s case when I was first accosted about it in a LinkedIn group a few weeks back. My crime was not watching Fox News, which left me insufficiently exposed to the contretemp they and others on the political right have adopted as their updated version of the Terry Schiavo case pitting personal (in this case parental) freedoms against government and institutional intrusion into family matters.
While I object to exploiting these cases for one’s personal and political agenda – and imposing uninformed partisan views on complex medical decisions from afar – there is an obvious tension between personal control of family matters and the state’s obligation to protect innocent children who may be victims of parental abuse.
In this case, the concern that Boston Children’s Hospital had about the parents wasn’t the usual kind of abuse, but rather a variation on Munchausen-by-proxy in which a child’s healthcare condition is manipulated by the parents for greater medical attention.
Now I don’t know enough about the details, nor am I qualified to judge, whether this is one of those cases. But a leading children’s medical center came to that conclusion, and it was affirmed in a court of law.
That means many independent sets of eyes considered details you and I aren’t privy to and I, for one, am reluctant to inject my own biases and beliefs ahead of their conclusions.
This hasn’t stopped many on the political and religious right from weighing in with absolute certainty that the parents are completely innocent of this charge and that this is strictly another example of bureaucratic overreach by a liberal state government. While I don’t share this bias or jump to such a conclusion, they may be right this time. Even a broken clock is right twice a day, as they say.
Here’s a well-balanced video of the subject (it’s not up-to-date, but explores the issues fairly well; the links after this post will give you the latest development in this specific case)…
A Medical Urination Contest?
There certainly are extenuating circumstances that could cause one to question the whole affair – including the relative speed with which the Children’s Hospital physicians came to their conclusion and their apparent failure to consult with the Tufts’ physician who referred the case to them. He would presumably have had more experience with the family and could have informed their conclusion one way or the other.
Another apparent mystery is why the gastroenterologist at Children’s – he was the reason the teenager was referred to Children’s in the first place – was never allowed to see her at Children’s. Seems highly unusual, to say the least.
The fact that the parents were acting on their Tufts’ physicians’ guidance would suggest they were actually complying with medical advice, rather than ignoring or abusing it. Indeed, much of this case seems to revolve around differing medical diagnoses that are usually resolved with yet a third medical opinion rather than one medical group dictating its diagnosis over the other.
It also appears that alleged verbally abusive language by the parents may have played a role in the Children’s Hospital diagnosis – and that’s only one area where the rest of us are ill-qualified to opine. But it’s unlikely this would have risen to the political circus it’s become today if it didn’t resonate with those with deeply-felt political biases.
The latest wrinkle in this contentious case is that the young patient will be transferred to a facility in her own state (Connecticut) next week, which is seen as a step toward returning her to her home. This, however, will depend on the parents’ compliance with some court-imposed conditions they’ve been reluctant to accept to date. Indeed, the links below are to stories about their outrage that she’s not being returned home immediately.
Much Worse Goes Unnoticed
in our Healthcare
Why this is a subject appropriate for me to address here is my view that there are far worse things going on in our healthcare every day – and not just in isolated cases like this one. At least here everyone involved appears to have good intentions, political objections notwithstanding. They may or may not have over-reached – as alleged by supporters of the “Free Justina” movement (she’s currently being held in a psychiatric facility against her parents’ wishes).
All of us, however, are routinely subjected to less noble medical intentions driven by the turbo-charged engine of medical profiteering. This blog and the book on which it’s based – with a name like Our Healthcare Sucks – obviously takes issue with much of our nation’s misguided healthcare.
But I hesitate to intrude on individual cases without the training or information needed to weigh-in intelligently or meaningfully. My arguments rely more on aggregate data that forcefully demonstrate that ours is a healthcare system driven more by profits than compassion, more by self-interest than selflessness.
My beef here is that we’re all too quick to adopt isolated cases that play to our preconceived notions while ignoring the more mundane mendacities that wrongfully damage the lives of millions of Americans every year. That’s right, millions.
I refer you to an earlier post, “Got Cancer? Too Bad“, for an example of how egregious this can get in our healthcare when money’s the motivator – even when vulnerable lives are on the line.
In these all-too-common cases there’s little acting with noble intentions. These aren’t cases where well-intentioned people disagree and public disputes ensue. These are clandestine, unobserved, and unacknowledged – but they’re even greater violations of trust and human decency than the worst we might conclude about these more celebrated cases with greater political visibility.
Think About Your OWN Healthcare
If these more celebrated cases of potential medical malfeasance awakened us to more pervasive medical abuses that threaten all of us and those we love, then it would be worth enduring whatever unintended harms they may cause. But they never do.
They always end up like accidents on the freeway. We slow down to gawk for a while and proceed on our merry way, oblivious to the dangers in our own paths.
We should instead consider the real take-home lessons from such cases – which include the following…
Medical care is often misguided and wrongly-motivated,
Many symptoms are difficult to diagnose, leading to many erroneous diagnoses,
This can lead to misguided and often harmful treatments,
Doctors aren’t great team players and their hubris sometimes denies patients their rights,
Parents and other caregivers for those with chronic medical conditions are under extreme stress.
Child protection agencies need sufficient funding to employ their own medical expertise so as to not be overly-deferential to big academic medical centers that make mistakes like everyone else, and
We risk both physical and financial harm when we’re too trusting of our doctors and hospitals.
Sadly, however, this is likely to remain pinned to our partisan political divide – because absolutely everything in America has to be about politics, doesn’t it?
In reality, however, it’s much bigger than the politics of it. That, too, shall pass – and the spotlight will turn to whatever new scandal, real or imagined, suits those who devote the airtime to such things.
Meanwhile, you and I – and those we care about – will still be subject to the medical fragmentation, hubris, and ineptitude that this case only highlights.
But because that’s not really a partisan issue that can be milked for political gain, it won’t be stealing any headlines – except maybe in the Obituaries.
For an in-depth report of the specifics of the Pelletier case, see this two-part story in The Boston Globe.