Thus began a lengthy and contentious battle between
Justina's family, the hospital, and DCF. Most media outlets and social media
sided with the parents, using a lot of emotive language. There was a public
outcry against the hospital, which remained silent about any details of
Justina's care due to patient privacy laws. All that was really available was
the narrative told by Justina's parents. Rather than waste more space on the
background, I urge you to pause to go read my previous post about this, as well
as the follow-up post I wrote. Suffice to say, there was a lot of jumping to
conclusions and going beyond the available facts. So much so that two Federal
legislators introduced some rather dubious legislation…
Fast forward a bit. Justina was returned to her home in
2014 by the same judge that had originally ruled that she should remain in DCF
custody. A few months after returning home, she was admitted to Yale-New Haven
Children's Hospital for GI problems. Despite tests and treatment, she did not
improve and was transferred to Children's Hospital of Philadelphia. According
to the Facebook page A Miracle for Justina, run by Justina's sister Jennifer,
Justina underwent a surgical procedure to treat her continuing GI issues, and
was in the hospital again in September. As with media coverage during the
lengthy custody battle, there are a lot of implications that her health issues
are the result of Boston Children's treatment of Justina, though there is no
clear evidence that this is the case, nor do her gastrointestinal health issues
predating BCH receive much, if any, mention.
What brought this story to my attention again, however,
is the recent announcement that the Pelletiers are suing Boston Children's
Hospital, as well as four of its doctors (Jurriaan Peters, Simona Bujoreanu,
Alice Newton, and Colleen Ryan), for gross negligence and civil rights
violations. According to the Massachusetts Trial Court Electronic Case Access,
the suit was filed on February 11, 2016 in the Suffolk County Civil Court
division of the Superior Court. The family is suing for unspecified monetary damages. According to
Lou Pelletier, in his public statement on the case:
"This is not about revenge. This is about making
people accountable and making the medical community think twice before they
take actions that can do damage to a child and a family that can be
irreversible."…
There are a couple of things that I feel must be pointed
out, since they are details that bear on this whole story and have not been
widely reported. First off, although Justina was treated at Boston Children's
Hospital for a very (very) long period, that decision was made by the
Massachusetts Department of Children and Families, not by the hospital. DCF
ordered her to remain at BCH to be treated in the psychiatric unit.
Furthermore, there were early efforts by MA DCF to move Justina from BCH back
to Connecticut, but they were unable to do so in part because of Lou
Pelletier's threats to sue a program just twenty minutes from their house if Justina
was placed there:..
We also have to take Justina's own recollections of her
time at BCH with a grain of salt. Memory is notoriously fickle and subject to
alteration; it isn't a DVD that you can just cue up and replay. As more and
more time passes, and the story gets retold, it will change. Add in the fact
that Justina clearly loves her parents, that they and the rest of her family
speak very negatively about BCH, that her family appears to have a good bit of
influence on her, and top it off with continued media exposure, and, sadly, her
memories can get recast in a more and more negative light, and the possibility
of false memories rises. We need objective records to know what actually took
place.
There is no doubt that this entire episode has been a
very trying experience for Justina and her family. I do sympathize with her and
hope for the best outcome for her health and growth. Yet at the same time, I
cannot be certain of the Pelletiers' version of events. The hospital is barred
from discussing Justina's care, so the only side of the story we hear comes
from her family. They adamantly reject the idea that her symptoms may be
psychiatric in origin.
Linda and Lou Pelletier remain adamant Justina’s ailments
have always been physical, not psychiatric.
Even before BCH, Tufts doctors suggested that her
problems may have a mental health component, but her parents did not accept it
then, either. And their reluctance to even consider a psychiatric diagnosis
gives me pause. Does it stem from some sort of stigma against psychiatric
issues? A diagnosis of somatoform disorder does not mean that Justina is
"crazy" or that she's "making it up". The symptoms of
somatoform disorder are very real and can be very distressing. They are most
definitely physical, even if their cause is psychiatric. If there is a
psychiatric aspect to her symptoms, their reluctance to accept that can only
harm her, which brings us back to what started all of this.
The lawsuit against Boston Children's Hospital could go
one of several different ways. The court could find that BCH was at fault, and
that the Pelletiers are due damages that might help with their financial
situation, as well as pay for the care that Justina obviously still needs. Or
the court could find that BCH acted within the standards of accepted medical
practice. The court could find that in some aspects BCH handled things
improperly, but that the Pelletiers also bear responsibility for how things
went. They may also find that the fault could lie with DCF, who is not included
in the case. If the case follows any of those outcomes adverse to the
Pelletiers, then they will have wasted a lot of money and time, not to mention
the stress that a trial will cause Justina herself. That stress could adversely
affect her health. There is a lot of risk in this for Justina, with any
possible beneficial outcome rather uncertain. And if the case goes against the
Pelletiers, I'm fairly confident that they will not change their mind at all.
It seems that they are firm in their conviction that BCH is at fault for
Justina's problems and that they will not accept any psychiatric component to
her illness (though part of the agreement when she was released from DCF
custody included therapy for her and her parents). Even if the case does go in their
favor, it is far from clear whether it will elucidate which diagnosis was the
correct one.
At this point, I can only hope that this trial runs its
course quickly and that it does not cause additional distress for Justina,
though it may be years before a final judgment is handed down. I also hope that
it brings to light objective facts regarding her treatment at Boston Children's
Hospital. They may corroborate the Pelletiers' account, or they may contradict
their version, and I am fine with either outcome, because at least then we will
know the truth. But at the end of the day, my top concern and hope for all of
this is that Justina, a medically fragile individual, gets the best and most
appropriate care that she needs to thrive. Whether that care aligns with her
parents' beliefs or not, I sincerely hope that she gets it.
http://www.harpocratesspeaks.com/2016/03/Case-of-Justina-Pelletier-Still-Calls-for-Nuance.html
One problem with the parents' narrative, as they appeared on the Dr. Phil (YouTube link) show, is that they point to her condition before DCF took custody, when she was skating and apparently doing fine, to her condition after DCF took custody, where she is in a wheelchair and unable to walk. The implication is that DCF and BCH's actions led to her trouble walking. However, as reported by the Boston Globe:
ReplyDeleteThey were making the white-knuckled trip from Connecticut because 14-year-old Justina wasn’t eating and was having trouble walking. Just six weeks earlier, the girl had drawn applause at a holiday ice-skating show near her home in West Hartford, performing spins, spirals, and waltz jumps.
But now Justina’s speech was slurred, and she was having so much trouble swallowing that her mother was worried her daughter might choke to death.
She was clearly in a poor state before BCH even became involved in her case. That was the whole reason she was taken, by ambulance, to Boston Children's. Inconsistencies like this certainly do not help the credibility of their case, nor have their frequent media appearances assisted in efforts to transfer Justina's care to a more comfortable setting, let alone her own home.
That said, I can understand the Pelletier's position, as much as anyone not actually in their shoes can. If my child were taken from me, in my opinion, wrongfully, I would probably fight just as hard and try to keep a media spotlight on the case. And speaking off the cuff, especially over the course of a year, I'm sure my story might evolve, as well, given the malleability of memory...
At this point, though, we still have two conflicting accounts: the Pelletiers' story and the state's. We have only reports, not original source documentation or details. Judge Johnston's decision does add some information, but it is still too short to make any firm conclusions as to who is in the right. What makes this whole case particularly difficult to comprehend is that it is not a case of a reputable health care institution vs. a quack. It involves two reputable hospitals, each reaching a different, controversial diagnosis: mitochondrial disorder, which is rare and poorly understood, or somatoform disorder, which is also rare and poorly understood. Both are difficult to diagnose and have few definitive tests. I stand by my earlier post and would encourage others to keep in mind the points I made there, particularly the sections on if the parents are right and if Boston Children's is right.
http://www.harpocratesspeaks.com/2014/03/justina-pelletier-to-remain-in.html
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…
ReplyDeleteArticles about this commonly use terms like "kidnapped", "hostage", "horror" and "nightmare". Many frame the issue in terms of parental rights. Some go for the full-on conspiracy-mongering. The majority tend to support the parents, viewing BCH, DCF and the courts as overstepping their bounds and doing far more harm than good for Justina. They tend to assume that Justina's condition as described by her parents is unequivocally correct. Conservative and Christian groups have rallied around the parents, protesting outside the courthouse and holding a vigil outside Wayside Youth and Family Support. State legislators have even started working on a resolution calling for the immediate return of Justina to her parents. Few, if any, articles side with DCF, taking the BCH diagnosis without question. Some mainstream media, like the Boston Globe, have taken a more middle-of-the-road stance, as has at least one state legislator.
The core dispute involves her diagnosis. The Tufts doctors believe that she has a mitochondrial disorder and have prescribed a number of medications and vitamins. The Boston Children's Hospital doctors believe that her symptoms are psychologically based and that the treatment regime for the mito disorder is overtreatment and puts Justina at increased risk of harm. Other than some of the drugs that were prescribed by Dr. Korson, we do not know what all her treatment at BCH involves or whether her family has sought out other treatment options (e.g., alternative medicine). The basis of the "medical child abuse" allegation, therefore, is that Justina is being overmedicated.
So, are her parents and the doctors at Tufts right? Or are the BCH doctors correct? Those not directly involved in the case cannot make that conclusion without knowing all of the information available to her doctors at both locations. We don't have access to the information leading up to the diagnoses, nor do we know the details around whether or not the treatments have been objectively beneficial. What makes this case somewhat unusual is that both Tufts and BCH are large, respected institutions. It's not a case of legitimate doctors against an obvious quack. Rather, we have two competing, relatively new and controversial diagnoses. What is at stake?
If Justina's parents are correct and Justina does have a mitochondrial disorder, then erroneously taking her away from her parents can cause completely unnecessary stress and emotional trauma for both Justina and her family. In addition to the psychological burden of separation and dealing with the court system, there are the burdens of time (going to court, driving long distances to visit, etc.) and money (lawyer fees, medical costs for the altered treatment, if not covered by Medicaid, travel expenses and so on) that would otherwise never have occurred. Medically, discontinuation of her treatment plan could, potentially, result in a more rapid progression of her mitochondrial disorder, assuming that the drugs prescribed by her doctors at Tufts have actually been effective in stabilizing her condition.(continued)
(continued)If she is placed in a foster home, it is possible that the new family will be very loving and attentive to her needs, but there is also the risk that her new caregivers may have been inadequately vetted and may be abusive. That risk is especially concerning in the case of a child with reportedly complex medical needs.
ReplyDeleteIf the parents are correct, and Justina's separation from her family continues, then emotional harm is being done to both her and her family with no benefit.
On the other hand, what if the parents are wrong? What if Justina does not have a mitochondrial disorder, but instead has, as BCH contends, a somatoform disorder? What would be the impact of immediately returning her to her parents?
By all accounts, her parents appear to be absolutely convinced that her mitochondrial disorder diagnosis is correct and will correspondingly pursue treatment for that. They had reportedly already been averse to mental health services before they even approached BCH. If Justina were returned to them, it is almost certain that she would resume the cocktail of drugs and vitamins that had been prescribed to her. This could put Justina at increased risk of serious harm from unnecessary drugs for no added benefit: Tegretol (carbamazepine) may increase the risk of developing a serious or life-threatening blood disease, as well as carry other side effects that negatively affect her quality of life; Metoprolol can increase the risk of adverse cardiovascular complications and potentially worsen allergic reactions, if she has any allergies; and Midodrine can dangerously elevate blood pressure, as well as cause side effects that decrease quality of life.
In addition to the risks associated with over-medication, if Justina's symptoms do stem from a psychological cause, she likely would not receive the mental health care that she needs to treat her underlying anxiety. This would mean she would continue to experience physical symptoms, such as pain, nausea, weakness or dizziness potentially leading to more unnecessary and ineffective medical treatment with no resolution of her symptoms.
If BCH is correct, and she is immediately returned to her parents, the she is at risk of physical harm that could be serious and life-threatening.
Hopefully, I've made clear just how complex this case is and how difficult it is for bystanders and laypeople to make any sort of objective, informed conclusion about it. Emotions run very high and often lead people to make hasty judgments not supported by facts. The most common approach I've seen is support for the parents' rights to decide their child's medical care. More extreme versions of this almost seem to view the parents' rights above all else, despite the fact that children are not property; their rights to make medical decisions for their children are not absolute. Certainly, no child should be taken from their home and away from their parents without some damn good reason to do so. Alleging abuse should not be done lightly. Yet few of the sources I've read consider the other side of the coin. There is potential for very serious harm to Justina, if the allegations are correct. Child abuse and custody cases are complicated to begin with, but they are made even more so when medical care enters into the equation. The issue calls for moderate, nuanced discussion, not knee-jerk condemnations of either the parents or BCH/DCF based on insufficient data.
http://www.harpocratesspeaks.com/2014/03/the-case-of-justina-pelletier-calls-for.html