Wednesday, March 26, 2014

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.

Judge Joseph Johnston issued his decision on Tuesday regarding whether the Pelletiers or DCF would get custody of Justina. The process to reach this point has been quite long and full of twists and turns. According to an article in the Boston Globe, Justina was originally ready to leave Boston Children's Hospital's locked psychiatric ward in June 2013, but was unable to leave because DCF had difficulty finding suitable placement, in part, according to reports, due to her parents' actions. One program in Connecticut declined to take Justina after Lou Pelletier threatened to sue the program if they accepted her. It was only in January of this year that she was finally moved from the hospital to a foster program in Framingham, MA.

The Globe article included a link to Judge Johnston's decision (PDF). Reading through it, it does not paint Justina's parents in a favorable light. For instance, it notes that:
While Justina was at Children's Hospital, the parents were verbally abusive to Justina's hospital providers. Family members of other patients complained that Justina's parents stated their children were being kidnapped by Children's Hospital. The parents threatened to have hospital personnel's licenses revoked. They threatened to call the F.B.I. They called hospital personnel "Nazis" and claimed the hospital was punishing and killing Justina.
After a hearing in December, the court was considering granting conditional custody back to the Pelletiers, but it was concerned about their conduct. They reportedly threatened Justina's social worker to the point that he requested to be removed from the case. During scheduled visits with their daughter, Judge Johnston notes that rather than engaging in quality interaction with Justina, her parents instead swore at DCF personnel in front of Justina. After initially agreeing, in February of this year, to a temporary custody order with the CT DCF and placement in a program in their home state of Connecticut, Justina's parents backed out, saying they would not agree to placement anywhere but in their own home, nor would they agree to any further involvement with MA DCF or CT DCF. This caused Judge Johnston concern as to whether or not Lou and Linda would comply with any treatment plans or be able to provide for the proper medical and psychiatric care the Justina required.

Several other details were also noted in the decision. Quite early on, the court apparently tried to get the Connecticut DCF involved in Justina's case, with the aim of moving her closer to home as soon as possible. However, since CT DCF reportedly noted last summer that they were still investigating the matter and were not going to take any action, the court determined that it must maintain jurisdiction. And despite "substantiating the parents for neglect" in December last year, CT DCF still would not take on responsibility for the case and would not file a case in the Connecticut court system. And, since there was no action started by DCF, the CT court likewise refused to become involved.

In the end, Judge Johnston granted "permanent" custody to MA DCF, though Justina's parents can request a review and redetermination after six months. Since the decision was made effective retroactive to December 20, 2013, the Pelletiers can ask for a review in June of this year, rather than September. He also urged MA DCF to make even greater efforts to move Justina's clinical and legal care, as well as residence, to Connecticut, putting the court at the disposal of the parties involved to assist in this transfer.

Judge Johnston's decision is certainly a compelling argument, being a formal legal statement based on the evidence and testimony presented in court, but, as I did earlier this month, I would still urge people to take a more nuanced stance. We still do not know the details of Justina's medical and psychiatric diagnoses or treatment plans. Barring any real, unbiased details coming to light, it is irresponsible to unequivocally support either the Pelletiers or DCF. Particularly unhelpful are comments like those on this article at The Blaze. For example:


The text reads, "I would fully support any violent action taken to free this child from the government. Any law enforcement who gets in the way deserves to be shot." Other comments discuss various plans to essentially steal Justina back from state custody, such as organizing large groups of people to go into the hospital and grab her, or stopping and surrounding whatever vehicle is transporting her from her residence to the hospital, then fleeing the country. Fortunately, some voices of reason have denounced these tactics as being more harmful and good.

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:
They 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. As I read the various reports, though, I wonder how much of the parents' behavior is being driven by outside interests, such as Rev. Patrick Mahoney, who has been a very vehement opponent of Boston Children's, DCF and the court in this case. Are the Pelletiers' supporters fanning the flames, so to speak? They don't appear to be helping matters, at any rate.

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.

7 comments:

  1. What still baffles me is why Children's didn't just send Justina back to Tuft's when the Pellitiers asked them to. The Pelletiers were angry and upset (presumably because they'd be accused of harming their kid) but DCF could just as easily have investigated a case of potential child abuse at Tufts as as at Children's.

    I'm also left to wonder why the Tufts doctor, the one who had referred Justina to the GI at Tufts, didn't speak up earlier on -- if only to say that the girl was his patient and he diagnosed with and was treating her for mito.

    Tufts is a highly regarded hospital, like Children's. Presumably hospitals and doctors regularly disagree about the diagnosis of any given patient. Getting a second opinion is NORMAL.

    ReplyDelete
    Replies
    1. I think I can explain a bit of this to you, Katee - not having been there, but knowing the medical system thoroughly for 40 years or so.

      1. there is a great misinformation/lie/call-it-whatever that the Pelletiers are perpetuating. and the gagged MDs cannot reply to. They claim "they were coming to BCH to see Dr. Flores upon the advise of Dr. Korson" - that is just baloney. Dr. Korson could have recommended that they see Dr. Flores at BCH - in his clinic, during office hours, at his next urgent slot. Showing up by ambulance during a snowstorm at night and demanding to see a Dr. Flores (safe in his bed in Framingham or Brookline, who knows) - is obnoxious. Dr. korson could not have sponsored this. So, either the Pelletiers are naive - they are not - or they are lying.

      The girl was in a bad state, the parents thought. They chose to take her not to Yale New haven or to their local excellent CT hospitals - because, I guess, they are well-known there. in a bad way - as doctor-shoppers, as potential munch-by-proxy parents. And because there is a case against them in CT court. So, why not go to Boston this time, and claim Dr. Korson told them to!

      2. Once they are at the BCH ED, the case belongs to the ED attending, who decides what next. Two things strike me - the girl WAS admitted, which means that the ED doc in charge thought something was wrong with her. ED docs do not like to admit unless necessary. Second - she was admitted to Neurology (my specialty), not to Medicine, and I know 100% that she would have been cleared by ED or medicine to be medically intact - then they call us because they have symptoms that are not explained by findings. They would have loved to call Psych, but Psych does not admit those cases emergently, only those that are hurting themselves or others, acutely psychotic, suicidal. So they call Neuro.

      3. Neuro docs there are already biased towards 'mito". You see, mitochondrial disease is a NEUROLOGICAL diagnosis usually, and the diagnosis is made using bipsy with light and electron microscopy, immunohistochemistry, neuroradiology, bloodwork, genetic analysis, and physical exam and symptoms. Diagnosing 'mito" based on symptoms alone, ad Dr. korson was purported to practice - is similar to using an 8-ball, magic, augury, mice. It is not accepted by the medical community. it is .. sorry, wrong. It is like diagnosing multiple sclerosis (MS) by symptoms alone without a radiological confirmation, except worse. Much worse!

      4. Now we have doctors, not terribly good at people relations - the guy in charge was a european, actually, a dutch guy I think - who engage in a conflict against parents, and call risk management and the child protection specialist right away, and anger the parents by voicing out loud what they are sure of - the child has no "mito". I really blame the doctors here. They messed up. They should have handled it differently. I had seen similar situations handled very well.

      5. So why not transfer - at this point, the BCH was in a standoff with the parents, and accusing the parents of abuse. To do what the parents wanted - transfer care to Tufts - would be the right thing to do, but... they lost control of the situation, which was now under the DCF - and why did DCF not order transfer is obvious - they were not into doing what the parents wanted. This simple. A mistake. A transfer and subsequent DCF investigation at Tufts would have avoided most of the mess....

      6. The Tufts guy, Korson, did not speak up for ?? possible multiple reasons - first, he is controversial, and I would say to his face that if he diagnoses "mito" by symptoms -- he is a bit of a quack. A lot of a quack. Second, the parents may be lying 9again) about their relationships and conversation with him. he may have grown tired of them and afraid of them and suspicious of them just like their previous physicians had, and trying to distance himself and send them away.

      I hope I answered your questions.

      Delete
  2. I got a link to your blog, and am amazed at your measured and informed articles. I will quote you and give links as well whenever this issue comes up again.

    My own view is - the parents are disgusting, and likely - THOUGH NOT PROVABLY - are munchausen-by-proxy parents, however the judge is wrong - the courts and DCF should have worked with the parents immediately, a year ago, and insure compliance with court-ordered treatment, for example, frequent home visits, SW presence etc. Taking the girl away like that I thought was completely unjustified, even given how revolting the actions of those parents are....

    ReplyDelete
    Replies
    1. I’m a bit disturbed by some of the comments here, Let me respond to some of these:
      1. HB says that “My own view is - the parents are disgusting….” This attempt at character assassination in defense of BCH will not hold up in view of the massive public scrutiny of the parents and family by the press for over a year. Few families would survive this level of examination. The father is becoming effective and respected advocate for other child victims of institutional abuse. The older sister, also a Mitro patient is a very effective advocate for her sister.
      2. HB claims we are only hearing one side of the story because of HCFA Privacy laws. Actually a lot of the “other” side is already known and fully documented in many articles including this one: http://www.bostonglobe.com/metro/2013/12/16/month-medical-ordeal-conclusion-still-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html In any case Justina and her parents would almost certainly waive privacy in this situation in order to gain public support. On the other hand BCH/DCF are concerned about their massive liability in the upcoming lawsuit and/or criminal investigation and are interested in covering up whatever they can.
      3. HB criticizes the objective criterion used to establish the working diagnosis of Mitro at Tufts, but fails to mention the diagnosis of “Somatoform Disorder” imposed by BCH and used to justify the original court order granting custody of Justina to the state and DCF. Somataform Disorder is a subjective and controversial diagnosis that has now been discredited.
      4. Justina’s placement in the Bader 5 psychiatric ward is highly suspect. BCH is a research hospital dependent on hundreds of millions of dollars in research grants and drug company clinical trials. The BCH policy for IDE informed consent has a convenient exemption for children who are “wards of the state”. Thus the process of removal of a child from parental custody provides them with a ideal “informed-consent-free” human subject for clinical research using experimental psychotic drugs. Others have noted that the symptoms of Justina’s declining health after Bader 5 confinement are consistent with known side effects of such human experimentation.
      5. This exemption from normal protections against human medical experimentation for profit is invoked for some 400 unfortunate children per year at Boston Childrens. This constitutes a disturbing institutional system with a high potential for abuse that is practiced at BCH routinely.
      6. In this specific case of Justina, there is already a lot of documentation collected, in spite of the BCH/DCF attempts at cover-up. The pending lawsuit (and/or criminal investigation) could evolve into a class action covering dozens of other child victims. Those folks (nurses, administrators) working at either institution with direct knowledge of the situation should be advised to keep thorough contemporaneous notes of their observations, and also to collect and preserve any documentation they can. This will not only provide a degree of protection for the witnesses but will also provide an ability for those with a conscious to “do the right thing” when the time comes.
      JL

      Delete
  3. I appreciate your writing about this HP. I have been following it and the more I read, especially on the Right Wing Watch website, the more I am just completely convinced the parents are liars and were abusing Justina. The state is doing the right thing by keeping her.

    What I don't understand is why there is not a group, that I can find, for supporting the state's efforts and BCH's. There are borderline terrorist activities against the state, the judges, the hospital and more but nothing in support? Do you know of anything?

    ReplyDelete
  4. Also, I get the impression that DCF wanted to keep control of Justina away from the parents and thus were not willing to comply with the family's wishes from the get go. From the get-go, the Pelletier's have been lying and harrassing and borderline abusive to anyone and everyone who did not do things their way. So, that is my guess why DCF did not transfer Justina. The parents showed not even an attempt to change their ways so why bother?
    Now, they could have been compelled into parenting education courses, as many parents are when their child is taken from them. They could have been compelled into anger management courses. Why this was not done is a mystery.

    ReplyDelete
  5. HarpocratesSpeaks appears to be by far the best analysis of what is publicly known about this confusing case. Thank you.

    ReplyDelete

You need a Google, LiveJournal, WordPress, TypePad, AIM or OpenID account to comment. If you need one of those, click on the appropriate link. Spam comments will be deleted. Comments on posts older than 30 days will go into moderation, due to the activities of commercial spammers.