Thursday, March 3, 2016

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.

The Background

Connecticut teenager Justina Pelletier had been born prematurely and had a history of gastrointestinal issues and learning difficulties. After years of being sick off and on, she developed stomach cramps and blockages. Exploratory surgery revealed cartilage wrapped around part of her colon. Despite its removal, along with the removal of her appendix, she did not get better. In 2011 her care was transferred to gastroenterologist Dr. Alejandro Flores, and the following year she had another, relatively new, procedure called a cecostomy performed to install a button port through which doctors could administer drugs that would force her colon to flush itself out. She was then diagnosed in January of 2012 by a Tufts physician, Dr. Mark Korson, as having mitochondrial disorder, a rare and very difficult to diagnose disorder. Dr. Korson's diagnosis consisted of cataloging Justina's symptoms, rather than performing diagnostic lab tests, and he admits that he could not be 100% certain of his diagnosis (Boston Globe, Dec. 15, 2013). Then in February 2013, she fell ill with influenza. She began to have difficulty walking and wasn't eating. Dr. Korson advised her parents, Lou and Linda Pelletier, to take her to Dr. Flores, who had transferred to Boston Children's Hospital. And so they had her taken by ambulance from Connecticut to Boston.

The physicians on shift (Dr. Flores was not on call that day) in the BCH emergency department began to care for her, asking Justina's parents about her medical history. Dr. Jurriaan Peters, the neurologist on call in the ED that saw her, had his doubts about the mitochondrial disorder diagnosis. He noted that a muscle biopsy (a common test to try to diagnose a mito disorder) had never been done and that her metabolic workup did not show anything unusual. He called in psychologist Dr. Simona Bujoreanu, who observed that Justina's symptoms grew worse when her mother, Linda, was around. This led Dr. Bujoreanu to suspect somatoform disorder. Somatic illnesses manifest as physical symptoms without any physical cause, being psychological in origin. Justina's parents rejected the psychological diagnosis and insisted that Justina continue being treated for mito disorder.

The resulting conflict between the Pelletiers and the BCH doctors resulted in a suspicion that Justina was the victim of medical child abuse, a term that has come to replace Munchausen Syndrome by Proxy. Basically, BCH believed that Justina was being inappropriately treated for an illness she did not have, and that the treatment was thus putting her at unjustified risk. The case was reported to the Massachusetts Department of Children and Families, who agreed with the BCH doctors and had Justina admitted to the hospital's pediatric psychiatric unit. And, this wasn't the first time a DCF complaint was made against Lou and Linda Pelletier, as a complaint had been filed against them in Connecticut in 2011.

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.

New Developments

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."
Justina, who also appeared at the announcement, stated that the hospital treated her "badly". In an interview with FOXCT reporter Beau Berman (starting about 5:20 in the video), Justina describes what sounds like physical therapy, which could be exhausting and aversive, even if medically necessary.

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:
There were efforts by the MA DCF early into this case to place Justina in a program located approximately twenty minutes from her home in Connecticut. The program was identified as an appropriate placement to meet Justina's needs and would have been able to provide services for the parents. Unfortunately, the Connecticut program declined to accept Justina because Mr. Pelletier told the program he would sue the program if Justina was placed there. This program continues to decline to accept Justina. Other programs refused to accept Justina due to concerns of litigation by Justina's parents and the confidentiality of other clients.
Efforts to get Justina out of the hospital were plagued by programs declining to accept her due to fear of legal action, as well as media exposure of other patients, since the Pelletiers were very, very active in getting television coverage.

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 were also some new details mentioned in the Boston Globe article that caught my curiosity. That article mentions that last year, the Pelletiers filed for bankruptcy, that their house faced foreclosure, and that they were able to settle their mortgage payments with money from A Miracle for Justina, a non-profit fund set up by Justina's sister, Jennifer. The implication is that the encounter with Boston Children's Hospital, and the ensuing custody battle, led to the Pelletiers' financial straights, and that if this ordeal had not occurred, they would not have had to file for bankruptcy or faced foreclosure.

Before I get into the bankruptcy claim, there is one small matter that I feel should be pointed out regarding A Miracle for Justina. I haven't been able to find it registered anywhere. In Connecticut, a non-profit does not have to register if it is expected to raise less than $50,000 per year (CT State Statutes, Chapter 419d, Sec. 21a-190d(6)). Without any public listing, I don't know for certain if they filed for 501(c)3 status, though they do represent it as a non-profit fund. However, the purpose of a non-profit is to support or advance the public good, not to benefit an individual, particularly one associated with the non-profit. If A Miracle for Justina has been granted tax-exempt status, then using the money from that fund to pay the Pelletiers' mortgage debt is not legally allowed and would be subject to rather significant excise tax.

At any rate, I looked for court documents relating to a bankruptcy filing and found that Lou and Linda Pelletier did, indeed, file for Chapter 13 bankruptcy in 2015. I also found that they filed for bankruptcy in 2014 (Chapter 7) and 2012 (Chapter 13). There were also a few of collections cases that went against them in 2008 and 2011, as well as foreclosure proceedings in 2008 (withdrawn by the plaintiff in 2015) and in 2011, which may be the one mentioned in the Globe article, as it is still open.

With these added details, it's clear that their financial difficulties predate their encounter with Boston Children's Hospital by several years, though certainly the fight did not help their financial situation. It also seems that their use of money from A Miracle for Justina may hamper their bankruptcy filing. One document from that case alleges that the fund (which the Chapter 13 Standing Trustee calls a charity) has brought in more than $50,000 per year and is thus not properly registered. The document goes on to allege that reliance on the charity to make payments does not comply with state bankruptcy statutes.

I bring all of this up because, although Mr. Pelletier says that this is not about revenge, that it's about making the medical community think twice, there is definitely a financial incentive to suing the hospital. The potential financial gain to be had and the debts that they face must factor into their decision to sue and how they frame the events, even if they may not be consciously aware. It is not clear whether their difficulties stem from Justina's history of health issues or due to other factors, and frankly, it doesn't particularly matter. But discussions of the lawsuit should go forward with an awareness of all of the factors that may play a role upon it.

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.
_____________________________
Additional Reading and References Used

The Background
New Developments

107 comments:

  1. The law suit may lead to more information coming out about what really happened. Thank you for following that.

    ReplyDelete
  2. When it was medically "appropriate" to end Justina Pelletier's psychiatric confinement and isolation in June of 2013, the girl was a ward of the State of Massachusetts cared for by their de facto guardian and foster parent, Boston Children's Hospital. Whatever the parents did, the girl should have been moved out of Bader Five. As any facility that took her for our State was sovereign immune from potential liability, the contention that the parents "prevented it" is ridiculous. When "called out" for the obvious great deficiency of leaving her there, there certainly wasn't any difficulty in moving her to Wayside and later to JRI.

    The other factor in the continued imprisonment was that Children's had to have its way. It was always in their power to deescalate things with the Pelletier Family. It seems Justina was kept away from anyone and everyone that might have possibly questioned the "party" line and harmed (???) her as a result. And, what was Children's doing? Holding a non-psychotic teen in psychiatric confinement, isolated from everyone that she herself might have wanted to communicate with, all very much against her own will from the very beginning.

    So was our DCF, Children's or both of them institutionally guilty of criminal civil rights violations which included false imprisonment, child neglect, child endangerment, and child abuse? These are "high felonies" to have committed by mistake.. which they likely were.

    Former Secretary John Polanowicz finally made Justina Pelletier the winner by easily doing what the hospital, DCF and Courts consistently refused to do -- deescalate tensions with the family by showing both reason and mercy and then by quickly reunifying the family safely as the law requires. Yes, it should have happened in June of 2013 at the latest but, Boston Children's had to be the winner and will now find itself with a losing hand.

    The negligent players blamed those terrible parents who were responsible for it all, at least until they were painted into a corner by Secretary Polanowicz. Children's now wants to deflect blame onto the State when they were the indispensable actor in all of it. Furthermore, according to three other top flight Children's Medical Centers it isn't and wasn't all in her head. So, the course of treatment was incompetent as well as immoral.


    ReplyDelete
    Replies
    1. "As any facility that took her for our State was sovereign immune from potential liability"

      Whether or not any facility would be immune from liability, they could still have a suit brought against them, which they would have spend time and money to get dismissed or defend. That is time and money taken away from caring for other residents/clients. The parents are not absolved of responsibility for how things played out.

      "It was always in their power to deescalate things with the Pelletier Family."

      BCH was required to act according to what, in their medical opinion, was in Justina's best interests. Part of the reason for keeping family members away stems from their suspicion of medical child abuse. One thing that's necessary to confirm that diagnosis is to keep the family away to see if symptoms improve, since in cases of abuse, it's the family that is causing the harm.

      As to keeping Justina on Bader 5, IIRC, BCH was directed by DCF to continue providing psychiatric care for Justina and to not release her to her family. An individual appointed by DCF was Justina's temporary guardian, not BCH. However, the details of what BCH was directed to do, and the exact care that they provided, cannot be disclosed due to HIPAA privacy protections. Hence why we only have one side of the story.

      I personally do not know whether Justina's parents or BCH were right or wrong, in part or in full. I don't have access to the medical records and notes, nor do most people who comment on the case. Without all of the details, firm conclusions cannot be drawn about who is right or wrong, or the degree to which any party contributed to the situation.

      Delete
    2. And, the DCF's guardian consistently did everything and anything that Boston Children's Hospital wanted them to do -- all very much against the very mentally competent fifteen year old girl's will throughout. Placing a non-psychotic teenager in psychiatric imprisonment for fourteen months was despicable and outrageous conduct on the part of Boston Children's Hospital. That the State of Massachusetts allowed them to pursue that course in no way absolves BCH of gross misconduct.

      Oh, the State could have placed Pelletier in JRI in June of 2013. Or, in other places. Massachusetts changed course right after the Federal Courts delivered a civil rights restraining order to Massachusetts in regards the treatment of another teenaged girl N. T.. The parents were "extorted" into accepting 13 months of punitive psychiatric treatment that did her no good but great harm. Sounds familiar.

      I do believe Boston Children's is the best hospital of its kind -- I know several kids, alive and doing well today, only because of that institution. However, this doesn't excuse evil behaviors or bad medicine.

      Delete
    3. Late to the comments here, but a facility or a foster home can decline a child. Except emergency short term care. In Massachusetts foster parents can give a 10 day notice and the child will be transferred to a new home. No one was willing to take Justina , due to the social media outrage her parents created.

      Having your child/children in DCF custody is stressful for any parent, but it was apparent they wanted Justina home and if not home close to home.

      Delete
  3. One annoyance is, courts find legal facts, which may not be verifiable scientific facts, as the two are quite entirely different.
    Does the child have a mitochondrial disease? Based upon what has been said, no, as she never had a proper test to diagnose a mitochondrial disease. You can't diagnose a mitochondrial disease without examining the *($&! mitochondria and that requires a biopsy and gene sequencing, not guessing.
    I'll be blunt and wonder if the "diagnosing" physician wasn't paid to "diagnose" that alleged malady, as that is in no way, shape or form a best practice in diagnosing anything whatsoever.
    So, I'm already smelling something fishy and we're nowhere near a dock. The rest now has turned into gag orders and advertisement, the latter can come back and bite the parents in the butt if they manage to seriously contaminate any prospective jury pool.
    I smell an entire ship full of fish here, as things aren't adding up. Yes, an ill child can bankrupt one, but there are programs to prevent two consecutive bankruptcies in a few years. The string of bankruptcies suggest something else is going on beyond the initial story and it's suspiciously like medical abuse in pattern.

    Regardless, the poor kid is stuck in the middle of this mess, the parents are milking it for all it's worth (I recall an inbox item with the "charity" in question, as I recall, it was one of the go fund me type of sites, which one escapes me currently and the mail was long ago deleted and purged) and it'll continue until at a minimum, the verdict is read, more likely, throughout all appeals processes.
    But, memories are indeed malleable. Research shows, when one recalls a memory, it's read out, then written back in, leaving an opportunity to corrupt the memory via interference by suggestion.
    All that said, I'm willing to bet that any mitochondrial testing is at least a decade away, as this meanders through the legal system.

    ReplyDelete
  4. Two years ago I replied to your article concerning the Justina Pelletier case with detailed comments on the appropriateness of the justification for the removal of the girl from her home, the somatoform diagnosis, and the evidence I found that contradicted the accusation of quackery against Dr. Korson, Justina's original treating physician. I was dismayed to find that, after two years, my comments were either totally ignored or dismissed out of hand, without even a rebuttal. After reading your most recent article, I revisited my comments and did a little more research on the internet (not just blog sites) and as a result, I stand by everything I said at that time.

    I have read your posts concerning the vaccination controversy from time to time, and find that your comments on this subject appear to favor published science instead of emotion-driven opinion. That does not seem to be the case with comments about the Pelletier case. Perhaps I misunderstand, but I detect a bias toward acceptance of the state's position, even if there is valid scientific evidence to the contrary. The most egregious example of this bias is the tacit agreement with the accusation of quackery against Dr. Korson, as evidenced by the lack of any reply to the posts by your readers in which this is stated. This accusation is often based on the lack of a muscle biopsy, sometimes referred to as "the gold standard" for diagnosing mito, to back up the diagnosis in Justina's case. However, this is a surgical procedure done under general anesthesia, which is often not well tolerated by mito patients (based on medical literature), costs from $5,000 - $15,000, and is not always definitive. Might it be reasonable for a physician who is a recognized expert in biochemical genetics, knowing that there is a genetic component to this disease, and having been treating the patient's sister, who has been diagnosed with mito based on positive muscle biopsy, to make a working diagnosis based on this coupled with similarity of symptoms? This would avoid the trauma and cost of the biopsy. Remember that the only treatment currently available for mito is symptomatic rather than specific, so there is probably minimal risk of harm due to incorrect treatment. An analogy that we are all familiar with is flu. The "gold standard" for diagnosing this viral infection is the serum antibody titer, but your family doctor probably doesn't do this when you consult him for flu-like symptoms. He probably notes your symptoms, and with knowledge of what's going around, comes up with a working diagnosis of the flu and prescribes a broad-spectrum antibiotic and perhaps cough syrup, tells you you can take Tylenol for aches and fever, and instructs you to call if your symptoms don't subside in a few days or get worse. Why is the former process quackery while the similar latter process is normal medical practice? To me, this points to a conclusion that political considerations favoring the demands of the state over science and basic human rights, and makes me wonder if your stance on vaccination (with which I generally agree) supports state mandates more than it does the science that demonstrates the efficacy of vaccination.

    ReplyDelete
    Replies
    1. Hi, DAR,

      My apologies for not responding to your last comment. Sometimes, real life happens and things slip by the wayside. That said, I'm not obligated to respond to any comments. My choice to reply or not does not imply any endorsement or dismissal.

      A couple comments. First, regarding Dr. Korson being a "quack". You will note that my articles have been very clear on the point that he is a respected physician, and nowhere did I suggest that he is a quack. One commenter voiced an opinion that Dr. Korson is. That, however, is not defamation, since it is merely an opinion, which all commenters here are allowed to voice. It should be clear from my articles and comments that that is not my opinion. I do not agree with that opinion, even tacitly.

      I have also tried to remain relatively neutral in what I have written, sticking only to the facts that are known. I have tried to make that point clear.

      As to your comparison to influenza, first let me clarify that any physician who prescribes antibiotics to treat the flu is not practicing the standard of care. Since influenza is a virus, antibiotics would do nothing to treat it. The only reason to prescribe antibiotics would be to prevent secondary infections. There are some antiviral drugs that are approved for the treatment of influenza, but they are generally not used, in part because they are of middling efficacy and in part to avoid the problem we already have with antibiotics, i.e., resistant strains. If a doctor suspects influenza, because there are no effective treatments, they would send the patient home with advice on how to manage symptoms, such as avoiding dehydration, controlling fever, etc.

      As far as mitochondrial disorder goes, the situation is quite different. As with flu, yes, symptom treatment is the order of the day, from what I've been able to find about it. However, how symptoms are managed is quite different. Mito disorder is commonly treated with vitamins (relatively benign if used in moderation), but drugs are also used. Recall that Justina was on a cocktail of drugs (Tegretol for neurological problems, Metoprolol for a rapid heart rate, and Midodrine for boosting blood pressure). Let me quote from my original post on the topic:

      "[In the case that Justina did not have mito disorder] 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."

      Finally, regarding diagnosis, from what I had been able to find, the scientific community largely supports muscle biopsy, blood and CSF tests, and similar lab tests as the best means of diagnosing mitochondrial disorder. Diagnosis by symptom grouping appears to be on somewhat shakier ground.

      As I've been saying all along, though, the only information we have on this story comes from Justina and her parents. Her actual medical condition cannot be confirmed based solely on public reports. We do not know any verifiable details regarding her treatment while in DCF custody. Because of that, it is premature to side with either her parents or DCF. You may be certain in your beliefs, but I just cannot share that certainty based on what little objective information is available.

      Delete
  5. First, I must apologize for my obviously angry reply to your article. I do understand that it would be impossible to reply to all posts that appear on your site. That said, I would like to address, as briefly as I can, some of the points you made in your reply.
    First, I know that the antibiotics often prescribed for flu are intended only to prevent secondary bacterial infections. I chose not to comment on this because it was secondary to the point I was trying to make, and I was aware of the character count limitation on this site. The main point is that, if the physician has sufficient additional information on which to base a working diagnosis, he may be able to dispense with the time-consuming and expensive ‘gold standard’ tests without excessive risk to the patient. Concerning the muscle biopsy, I would like to present a quote from the Cleveland Clinic’s website:
    MYTH
    A muscle biopsy is the "gold standard" for diagnosis of mitochondrial disease.
    FACT
    Although the muscle biopsy is a powerful diagnostic tool, it should not be considered a “gold standard.” A biopsy examination includes microscopic evaluation, enzyme testing, and genetic testing. Although all U.S. labs that offer muscle biopsy meet strict laboratory guidelines, there is no agreed-upon standard approach for enzyme testing. Furthermore, a muscle biopsy with full analysis costs well over $10,000 and poses both surgical and anesthetic risks. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing. In either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy.
    The Cleveland Clinic is a highly respected medical and academic institution, whose opinions I am not qualified to dispute. I present it here as an alternative view on this subject.
    Second, concerning the drug cocktail; from what I have read in published medical literature and on various medical websites, mito is an extremely complex spectrum of disorders, presenting an equally complex set of symptoms. Treating this disorder often appears to be a kind of medical whack-a-mole, where the objective is to treat the symptoms in such a way as to provide the best available quality of life for the patient. Although I am neither an MD nor a pharmacist, I can imagine a situation where the desired activity of a drug to treat a symptom is actually a side effect of the drug. In that case, the primary activity must be suppressed with another drug – obviously not a good situation, but possibly the only treatment available. Neither you nor I are qualified to judge, but the prescribing physician, Dr. Korson, was so qualified. If another physician had reasons to disagree with his treatment plan, I believe there are procedures available to address this, short of using the state’s coercive power to take a case away from one licensed physician and giving it to another without due process involving the patient or,in this case, her legal guardians, her parents.
    I won’t go into detail on the somatoform diagnosis, as I covered it in my email, except to say that, in diagnosing the patient with this disorder in violation of the procedures and criteria specified in DSM-IV, and treating it by placing her, unnecessarily, in a high security psychiatric facility, BCH was not practicing any standard of care I’m familiar with.

    A final comment: It has often been said that we know only one side of this issue because the hospitals and physicians are barred by HIPAA regulations from public comment. However, a patient, or the patient's legal guardian, can, if they so desire, I believe. However, during Justina's incarceration, the state was her legal guardian, so her parents could not release any medical information.

    ReplyDelete
    Replies
    1. This is why it is a violation of human rights for a person to have a non-family "guardian" appointed by the State. Such a "guardian" is not sufficiently free from influence by the State, when the guardian is supposed to operate independently and represent a balance of powers. State-appointed guardians preserve a fiction of balance of powers, but not the reality of it. It is a way for the State to violate human rights of children and parents while covering themselves with a fig leaf of "consent". There is a huge civil rights problem in CPS cases across the country. I understand that many of them are trying to do good things, but absolute power corrupts, and there is too much power vested in CPS and single-judge family courts (where no jury trial is even allowed), and the use of state-appointed guardians as a method of depriving parents of their day in court, simply adds to the problem. I will always suspect all CPS court decisions until this system is reformed to offer the same types of human rights protections as exist in criminal courts.

      Delete
  6. This case is absolutely outrageous. Does anyone remember the tv show HOUSE? Any competent medical practitioner should consider a differential diagnosis. What other conditions present with similar symptoms? These doctors not only ignored all the evidence (and medical records) from other doctors, but immediately assumed that her problems were purely psychological in nature.

    In fact, one of the symptoms of mitochondrial disease is mental illness. Even if she presented as being psychotic, she still deserved to be tested for mitochondrial disease. Boston's Children's Hospital denied her this testing, and subjected her to a significant delay in treatment if she indeed has this disorder. And even if it turns out she doesn't have mito, she could still have some other rare illness. Maybe her parents are disagreeable, but who wouldn't be outraged if some ego-driven doctor tells you your daughter's illness is only in her head? You would be amazed at how many people I have spoken with who have been misdiagnosed by medical professionals- or even dismissed as being mentally ill.

    It is not that mitochondrial diseases are rare- it is that most doctors don't know how to diagnose them properly and most patients are not willing to spend the money on expensive "experimental" diagnostic testing. Often diagnosis is delayed until a patient is critically ill, or has been ill for an extended period of time. Many people end up seeing numerous specialists- this is normal for patients with the disease.

    Even when mitochondrial disease is suspected, a watch and wait approach may be appropriate. What is the point of expensive diagnostic testing if the treatment remains the same? Why not just try the treatment and see if it works? Plus, most health insurance companies are not going to pay for experimental diagnostic testing.

    I can't say whether or not Justina has mitochondrial disease. But it is outrageous that they denied her testing (and treatment) by a doctor familiar with the disease.

    The fact that her family has declared bankruptcy is not at all surprising. This is very common in patients with severe chronic illnesses. If it were not for my family supporting me (and spending thousands of dollars on my medical care), I would have been homeless a long time ago.


    ReplyDelete
  7. The very moment the doctors at the Boston hospital decided that they had a new guinea pig to play with and took the case to court, the family lost.

    In Denmark they made a research involving thousand children who have been the subject of court cases involving parental abuse. The research concluded that it didn't matter if the children were placed at foster parents, boarding school, treatment centers or just left alone with the abusive parents. The outcome was the same! The entire system wasn't able to improve the situation. The children lost in all cases. Tons of judges, lawyers, social workers make a career of these cases and they forget the children.

    Nothing good comes out of letting professionals into these cases.

    ReplyDelete
    Replies
    1. In Denmark, a patient named Karina Hansen, remains a prisoner of the state to this very day, after being declared competent, and executing papers designating her parents to be her medical proxy, and after calling the police and making sixteen other calls objecting to her incarceration.

      For the crime of having a chronic debilitating illness.

      Patients are human beings, and they deserve all the human rights of any other human being.

      Thank you for sharing this.

      Delete
  8. The bottom line is that Justina Pelletier has a human right to privacy and self determination. Also, she was an older teen, capable of understanding the issues, and not a child who was incapable of comprehending the issues. As she was a legal minor, the right to exercise that right of self determination was vested IN HER PARENTS. The issue of whether she had somatoform disorder or phsyical illness, or some combination of the two, was a matter of controversy among medical professionals, and therefore, it was HER HUMAN RIGHT to choose among the opinions and services offered by these medical professionals, and this right was exercised for her BY HER PARENTS. One thing that is important to understand in all of this is that the decision to seek treatment is not just a medical decision. It is a decision reflecting the personality, lifestyle, beliefs and preferences of the individual. Justina did not want this doctor or this treatment. Her parents did not want it for her. The fact that the family was unwilling makes all the difference between imprisonment and torture, and an extended hospital stay and unpleasant therapy. To put this another way, a sixteen year old girl was locked up against her will for an entire year, and deprived of the right to say "no" to people who touched her body. From her perspective, she was imprisoned and tortured. WHAT CRIME DID SHE COMMIT THAT SHE DESERVED TO HAVE HER HUMAN RIGHTS VIOLATED?! If she had been 18 years old, she would have had a right to say "no" to the doctor and to the therapy. As a legal minor, she was supposed to have a right to say "no", if her parents supported her decision. That is the problem in this case. Not whether the diagnosis and treatment was correct, but whether a patient has a right to choose among the professional opinions and services offered, and whether a patient, ultimately, has a right to liberty, privacy, self determination, association, and all those other rights that most people take for granted. And, should we, as a society, deprive people of their human rights because they are a few months shy of our legal definition of adults, or because they have an illness. ALL MEN ARE CREATED EQUAL. Are teens created equal? Are medical patients created equal? Why are they deserving of less human rights than the rest of us? Being chronically ill as a child is hard enough. Being kidnapped and tortured, by people who claim they wish to "help" you, is a living Hell. Shouldn't doctors "first, do no harm"? Maybe Justina's parents were not healthy for her, but was being kidnapped and tortured any more healthy for her?

    ReplyDelete
  9. A huge concern that I had with the Pelletier case was the fact that the State circumvented checks and balances on its power by using a State appointed guardian, who was more easily influenced by The State than a truly independent guardian, such as a family member. State appointed guardians are unduly influenced by "experts" such as CPS and medical staff, and are not as likely to understand or advocate for the individuals lifestyle preferences, beliefs and other factors that should be taken into account in medical decisions. After the mother was carried out of court with a case of the vapors, I was willing to believe she might have had some issues, but what is the argument for saying the father was not competent, or that her other adult kin, were not competent? There was a mother, a father, adult sisters, and very likely, there were adults aunts and uncles who could have stepped in to become a guardian. I stopped believing the State, when they offered no clear explanation for why the father was unfit to manage the situation, or why the adult sisters could not serve as guardians. If one adult in the family is unfit, well.. okay... I guess. But, when one, two, three, four... is unfit, it starts to strain the credibility. When the State appoints a "guardian" in a situation where I can clearly see options for adult kin who could serve as a guardian, it seems clear to me that the State's intent is to circumvent the human rights of the individual and the individual's family.

    Human rights, and the violation of human rights by the imposition of unwanted "medical care" on the individual, is a greater concern in this case, than whether the diagnosis was "right". I do not believe, in a complex issue like this, whether there can ever be an objective "right" answer. It is all a matter of opinion, but the most important issue is who weighs the opinions and makes a judgement, and that should be the patient. When a doctor uses his "expert opinion" to influence the state to use it's power to force the patient to submit herself to that same doctor's or medical institution's care, that is the stuff of nightmares, an invitation for extreme corruption.

    ReplyDelete
    Replies
    1. Erm, "the vapors"?! What century did you take a wrong turn in? Here, in the 21st century, we use less dismissive terms that are more technically correct to describe emotional problems or mental illness.
      In this century, we also protect children from abusive parents and parents that refuse to appropriately care for their children. This is accomplished via child protective services and while errors can occur from time to time, it is thought to be better than permitting a parent to kill their children. You see, that was a problem in the past and in order to not have communities so agitated that abusive parents were lynched, child protective services was formed.
      Oh, as an aside, you seem to also lack understanding of the court systems of the United States of America. Not every court instance goes before a jury, criminal cases do, some civil cases do, many other cases, such as divorce court, family court and even traffic court go before a judge only.
      That's been true even when women wore corsets and suffered from "female hysteria" and "the vapors", the former now self-treated with a vibrator and the latter properly diagnosed and treated by a mental health care professional.

      Still, welcome to the 21st century, you'll find that we've advanced a great deal since the 19th century!

      Delete
    2. When you act like a swooning woman from another century, the language is appropriate.

      This case was not about "parents who refuse to appropriately care for their children." This child was under the care of a prestigious institution. The parents simply attempted to exercise their right to get a second opinion and choose their medicare care provider and to choose from among the treatment options offered to them by professionals.

      I do not lack an understanding of the court system. I OBJECT to the court system. When a person is deprived of liberty, that deserves a jury trial. The fact that people are deprived of liberty without a jury trial is a serious problem, and I will continue to bring it up. It is why cases like this are so controversial, because a person's liberty and their life as they know it, hangs upon the whims of a single judge.

      Delete
  10. How do you know that she had abusive parents?

    From what I've seen, she was incarcerated against her will in a psychiatric ward for over a year. Yet, when she came out, she appeared to be in no better physical condition than she went in, which begs the question that the doctors claimed her illness was the result of a psychiatric condition.

    What you may not know is that the abuse and neglect of patients with complex medical conditions by medical personnel and government agencies, including "blaming the parents", is an ongoing, international crisis.

    Civil courts, where a child's human rights are routinely abridged, fail to offer the same rights as a criminal court. They are not provided with -- the chance to face their accusers, the right to a high standard of evidence, the right to a jury trial, the right to a speedy trial or the right not to have to face double jeopardy. In fact, it is the norm to have a low standard of evidence, and no jury trial. So, again -- how do you really know she was abused? It seems that, in the end, as she was returned to her parents, the process decided that either she was NOT abused, or that the abuse was not that much to be concerned about.

    A sixteen year old girl who faces a loss of liberty should have AT LEAST the right to the same protections as the Boston Marathon Bomber.

    If you provide her with those protections, and the court then finds that she was "abused", then I will be satisfied that her rights were only abridged after all due consideration -- yet, i will still wonder at her loss of liberty, when she committed no crime.

    ReplyDelete
    Replies
    1. "How do you know that she had abusive parents?"

      Wzrd1 did not say that Justina had abusive parents.

      "From what I've seen"

      And that is part of the problem I've tried to highlight. You have seen only a part of the evidence. You do not have the full story from which to make a valid judgment.

      You might benefit from reading my other posts on this case. For instance, we do know that the hospital was not at fault for keeping Justina in their custody for a year. They were required by DCF to keep her. Further, DCF reportedly made numerous attempts to get Justina out of the hospital and into a transitional home that would be more comfortable and less stressful. However, those attempts were thwarted by her parents' own behavior (threatening to sue any place that accepted Justina).

      We do not have any information on her medical records, other than what her parents have stated, which, again, is biased. We do not know what her condition truly was when she was admitted to BCH, other than that she had been infected with influenza and her physical condition (e.g., ability to walk) was already deteriorating when her parents brought her to BCH. We have no information on what treatments she underwent during her stay at BCH.

      "It seems that, in the end, as she was returned to her parents, the process decided that either she was NOT abused, or that the abuse was not that much to be concerned about."

      Again, we are not privy to the deliberations that went on regarding her return to her parents. Other factors that you seem to not consider is that the parents agreed to measures that would hopefully prevent possible suspected abuse (e.g., regular mental health checkups).

      And, as I've said in every post on this case, it is possible that the parents are right, and that DCF and Boston Children's Hospital were in the wrong. The problem is that we do not have enough information available to make such a determination.

      In addition to my other posts on Justina's case you might also be interested in my posts on medical child abuse. Here are links to part 1 and part 2. Rare and difficult to diagnose diseases are prone to both incorrect accusations of child abuse and exploitation by medical child abusers to cover the abuse of their children. It is a very thin line between the two that I don't think anyone involved takes lightly. The consequences of getting it wrong, in either charging abuse or missing abuse, are too great.

      Delete
    2. Are you arguing that it was wrong for the parents to do the following: "thwarted a transitional home that would be more comfortable and less stressful. However, those attempts were thwarted by her parents' own behavior (threatening to sue any place that accepted Justina)" So perhaps the parents did not want to compromise their position that their child should be at their home -- I don't see anything wrong with that. I am not sure what the parent's ramifications in terms of their rights would be by allowing this to happen either. Also, by allowing her to go to a "transitional home" it goes against the parents reasoning that as parents, THEY should be in charge of her care 100% of the time -- not the state. At the end of the day, the parents were difficult -- but being difficult and believing in a differential diagnosis from a different doctor from a different hospital are not crimes. This was a power play by DCF and Boston's Children -- shame on both of them as both entities are culpable in this mess. I hope the parents win big.

      Delete
    3. @LT

      As I noted in the original post, her parents threatened to sue one potential placement early on (and others, later in the saga) that would have accepted Justina, provided her with a more comfortable setting, and been close to her home:

      "There were efforts by the MA DCF early into this case to place Justina in a program located approximately twenty minutes from her home in Connecticut. The program was identified as an appropriate placement to meet Justina's needs and would have been able to provide services for the parents. Unfortunately, the Connecticut program declined to accept Justina because Mr. Pelletier told the program he would sue the program if Justina was placed there. This program continues to decline to accept Justina. Other programs refused to accept Justina due to concerns of litigation by Justina's parents and the confidentiality of other clients."

      There were efforts by the Massachusetts DCF very early on to get Justina out of Boston Children's Hospital and into a more comfortable setting that provided for what, in DCF's judgment, would benefit both Justina and her parents. Her parents, whether right or wrong, were unwilling to accept that step toward getting her home. As a result, neither that facility nor any others were willing to take Justina, and so she remained at BCH for far, far longer than she should have.

      Looking at all of this objectively and trying to keep emotion out of the arguments, remember that it was the judgment of DCF that Justina was potentially at risk of harm if released to her parents. It would therefore be unethical, from their perspective, to release Justina to her parents without the treatment that they determined would best serve her. Whether fair or not, her parents' behavior worked against them and their ultimate goal of bringing their daughter home.

      We do not know the details of her medical record, and so cannot say whether DCF was correct or was in error. What we do know is that they and Justina's parents eventually agreed to a plan that would release Justina back to her parents with the condition that she and her parents would receive mental health care.

      As I've noted in every post I've written on this case, we must approach it with caution and nuance because we just do not have enough details available to say who is in the right. Her parents may have been correct. BCH and DCF may have been correct. Until we have full details, we cannot draw any reliable or rational conclusions. All we have are the parents' claims and a smattering of incomplete public details from the BCH/DCF side of things. That makes for a very skewed, biased, and unreliable view of the entire story.

      Finally, I agree that having a difference of opinions is not a crime. That's why the Pelletiers were not charged with any crime. But while parents are generally granted a great deal of leeway in how they raise their children, they do not have 100%, completely unfettered discretion. Children are not property. They are people with their own rights. The state will step in to intervene if there is suspected abridgment of those rights by the parents or caregivers. Sometimes the state makes the right call. Sometimes they don't. And sometimes they fail to intervene when they should have.

      If you haven't, yet, I recommend that you read my previous posts on this case. I go into a bit more detail about why we have to take a neutral stance until more concrete details are known. I'm not saying that BCH/DCF were correct, but I would argue that there is insufficient evidence at present to conclude that they were completely in the wrong.

      Delete
    4. The decision by citizens of this nation to sue to regain their human rights, should not be an excuse for the State to fail in their obligations. The State locked Justina in a psych ward for a year. There is no indication that she was so severely psychiatrically ill, that a YEAR of in-patient treatment is justified. She was imprisoned, denied the freedom to leave. Most sixteen year old's are cruising the mall. They had an OBLIGATION to find a suitable home for her, and a psych ward is NOT a suitable home. Their failure to do so is not the fault of the parents.

      Delete
    5. The state did try to get Justina into a suitable home shortly after her admission to BCH. And, her parents' actions (threatening to sue those homes, etc.) arguably did affect the state's ability to do so. You could argue that the only suitable home was her parents', but again, that assumes that the parents' assertions are correct.

      Yes, most 16-year-olds are cruising the mall. But most 16-year-olds also do not have illnesses/conditions that impair their bodies (prior to being taken to BCH, by the way).

      Delete
  11. The point is that when we abridge basic human rights like depriving a child of her liberty, it SHOULD go before a jury. I know it does not, and that is a serious problem.

    ReplyDelete
  12. Your level of ignorance as to our court systems is astonishing, you should initiate litigation against whatever school failed you so terribly!
    For one, you conflate a civil court and a criminal court, which have always been two entirely different systems. This, after you were corrected within a week about that very item.
    You then conflate US court systems and other nations court systems, as if other nations have the same Constitutional guarantees to the rights of their citizens or even the same court systems.

    ReplyDelete
  13. Oh, it should? Show me where in the Constitution where a civil court must have a jury. We're not speaking of a criminal court, we're speaking of a civil court.

    ReplyDelete
    Replies
    1. I am saying that a person who is deprived of her human rights SHOULD have protections in place, and very stringent due process. I am pointing at that our court system DOES NOT offer these protections to men, women, and children whose human rights are abridged in our civil court system instead of our criminal court system. WHY NOT? WHY is a Boston Marathon Bomber more entitled to Due Process than a sixteen year old child? WHY does a Boston Marathon Bomber get a jury trial, and a sixteen year old child gets a single judge? Why does a Boston Marathon bomber get a high standard of evidence, and a sixteen year old child gets a low standard of evidence? Why does a Boston Marathon bomber get a speedy trial, and a sixteen year old child languishes in her imprisonment for over a year?

      I UNDERSTAND that civil courts are not criminal courts. I PROTEST that people whose rights are abridged in civil courts are not afforded the same protections as criminals.

      A sixteen year old girl was deprived of her right to liberty, free speech and association, in a civil court. Where is her justice? Does anyone actually realize that she is a PERSON, not an object to be seized or re-possessed? Where is her voice? Where are her human rights?

      Delete
    2. @DFW Mom

      I think part of why people are not necessarily agreeing with you is that you are starting from a rather large assumption: that Justina's parents were correct. From what I have seen so far, there has not been sufficient evidence presented to confirm this. Put that assumption aside, then reexamine the case, keeping in mind that the opposite could also be true.

      Delete
    3. The requirement that no person should be deprived of life or liberty without Due Process is there. I argue that what happened to Justina was not Due Process.

      Delete
    4. It doesn't matter if her parents were 'correct'. What matters is the Constitution invests the right to privacy and liberty and self determination in the individual. In the case of child, that is vested in the parent until the child comes of age. If we abridge those rights, it should be done very carefully. In this case, there is a great deal of uncertainty that anyone is "correct". Where there are any reasonable doubts, the Human Rights should stay with the Individual. I am concerned that our so-called Justice System has a very low standard by which it chooses to imprison sixteen year old girls against their will and the will of their parents, and very few protections afforded to safeguard human rights, in the arena of our civil courts.

      Delete
    5. "What matters is the Constitution invests the right to privacy and liberty and self determination in the individual. In the case of child, that is vested in the parent until the child comes of age."

      I believe you have identified the core of this issue. Unless imminent danger to the child has been clearly identified, and I don't believe it was in this case, Constitutional rights must be upheld. To do otherwise violates the founding principles upon which this country and its Constitution are based. This is tyranny.

      Delete
    6. JusTina's parents did not need to be correct-the state did both in negating mito, and ruling out I other physical causes. AND affirmatively proving somatoform which was NOT possible in the given time-frame

      Delete
  14. Oh, as for Denmark, shouldn't you be also posting the Constitution of Denmark, court histories, etc?
    Entirely different nations have entirely different constitutions and hence, laws and rights are different.
    Or more simply, we're not in Denmark.

    ReplyDelete
  15. @Todd W, at the end of the day, one county in one state is the only one to ask, was everyone acting in good faith, out of the best interests of the minor child?
    For those of us not from that region, it's really none of our business. It's the business of Boston and her residents. For, the political leadership can examine all records in regards to the case and ascertain if wrong was done, right was done or if there was a comedy of errors, contributed by multiple parties or a single group.
    Instead, we get people acting as pundits, examining half-information, no evidence (as those are court records of a minor child) and shrill voices complaining about no juries, where juries are not employed.
    It's entirely possible that everyone was acting in good faith and that her parents were improperly advised.
    That's a matter for the leadership of Boston to consider and address. They have access to all evidence and findings of fact, we don't and we shouldn't.

    ReplyDelete
    Replies
    1. That's been much of my point on this all along. There have been very loud voices bashing BCH and DCF, with almost every news story on the case reporting the biased, one-sided narrative. It's all been incredibly irresponsible coverage. The ill-informed opinions shouted out with such certainty by the speakers has been very frustrating. I've just attempted to try to instill some basic critical thinking and skepticism. Hopefully, it's gotten through to some measure of people looking into Justina's case.

      Children's health is something that I take very, very seriously, and stories like this, I think, deserve sober, clear-headed analysis rather than emotion-fueled rage and unsubstantiated accusations.

      Delete
    2. The reason for this is people know that in civil courts -- there is no jury trial, there is a low standard of evidence, the proceedings are presided over a single judge making it a cult of personality -- and so, there is a basic distrust of the process, because there are clearly opportunities for a single individual to have overwhelming influence over the decision that results in a loss of liberty and the tearing of a family apart. Particularly in the case where the child being "helped" is nearly adult, and is speaking publicly that she is unwilling to be subjected to the medical care that is being forced on her, and unwilling to have her liberty stripped from her, it raises valid concerns as to whether this abridgement of human rights is just.

      Maybe it is, but the system is set up in such a way that citizens cannot have confidence in the outcome.

      Delete
  16. Oh, I hit send a bit prematurely.
    Thanks for the additional links, I'll review them when I awaken. I got off from work not all that long ago and I couldn't do the reading justice while this fatigued.

    ReplyDelete
  17. I think you analysis as to the parameters of the current lawsuit is a bit short sighted. The current lawsuit is limited to only looking at the beginning of this spectacle, not the totality of the entire 18 months. Is it a "standard of care" to change without consultation with the attending physician a diagnosis of a sick child? As a professional in the mental health industry, changing the diagnosis to somatoform in the amount of time in which it was is very,very alarming - regardless if Dr. Peters believed that the mito diagnosis was dubius. The current case will not be decided on the emotional volatility or economic stability of the Pelletiers (there are tons and tons of case literature which puts them into the mainstream of most parents with chronically ill children) - so this portion of your analysis is a non-sequitur. This case WILL be decided on the question which your analysis ignores - is Dr. Korson a respected and well credentialed physician or a quack? And if he is not, then that makes everybody else a bit suspect in doubling down on somatoform = a diagnosis that has been drummed in my head from grad school up that takes months not days or hours. That is the question of malpractice = of which the Mass malpractice tribunal has already ruled that the case is ripe for a court determination.

    Evidence that the current court case only deals with the beginning and not the middle or the end? A) The State of Mass is not a defendant B) Dr. Alice Newton filed a motion to remove herself from lawsuit citing immunity from lawsuits, she being the reporting official to DFS. Plaintiff attorney's argued that they were not suing her on the basis of what happened after the state became involved = just the decisions she made before. Motion denied.

    In my opinion the Plaintiff's attorneys are being shrewd. They are bifurcating this case, and looking to see what they find in discovery in the hopes of finding more about state involvement. These are no quak attorneys - they are an up and coming civil rights firm who have already been successful in many cases. They would not take the Pelletier case unless they had an inkling it could help their cause.

    ReplyDelete
  18. I think you analysis as to the parameters of the current lawsuit is a bit short sighted. The current lawsuit is limited to only looking at the beginning of this spectacle, not the totality of the entire 18 months. Is it a "standard of care" to change without consultation with the attending physician a diagnosis of a sick child? As a professional in the mental health industry, changing the diagnosis to somatoform in the amount of time in which it was is very,very alarming - regardless if Dr. Peters believed that the mito diagnosis was dubius. The current case will not be decided on the emotional volatility or economic stability of the Pelletiers (there are tons and tons of case literature which puts them into the mainstream of most parents with chronically ill children) - so this portion of your analysis is a non-sequitur. This case WILL be decided on the question which your analysis ignores - is Dr. Korson a respected and well credentialed physician or a quack? And if he is not, then that makes everybody else a bit suspect in doubling down on somatoform = a diagnosis that has been drummed in my head from grad school up that takes months not days or hours. That is the question of malpractice = of which the Mass malpractice tribunal has already ruled that the case is ripe for a court determination.

    Evidence that the current court case only deals with the beginning and not the middle or the end? A) The State of Mass is not a defendant B) Dr. Alice Newton filed a motion to remove herself from lawsuit citing immunity from lawsuits, she being the reporting official to DFS. Plaintiff attorney's argued that they were not suing her on the basis of what happened after the state became involved = just the decisions she made before. Motion denied.

    In my opinion the Plaintiff's attorneys are being shrewd. They are bifurcating this case, and looking to see what they find in discovery in the hopes of finding more about state involvement. These are no quak attorneys - they are an up and coming civil rights firm who have already been successful in many cases. They would not take the Pelletier case unless they had an inkling it could help their cause.

    ReplyDelete
    Replies
    1. "is Dr. Korson a respected and well credentialed physician or a quack"

      Not sure I would go that far. The question really should be, was Dr. Korson correct in his diagnosis, or not? He could be wrong without being a quack.

      As for the diagnosis of somatoform disorder (and the accompanying suspicion of medical child abuse), yes, it does take time to diagnose. But part of the process of diagnosis is to separate the alleged victim from the alleged abuser.

      "They would not take the Pelletier case unless they had an inkling it could help their cause."

      I won't speculate on the law firm's motivations for taking on this case. It is very high profile, the parents have huge public support, and the hospital has been cast as a heartless, uncaring behemoth more interested in their bottom line than in actually helping children. It's an apparently David vs. Goliath case, and people love rooting for the underdog. But again, we don't have all of the details.

      Delete
    2. No, separation of an allegedly abusive parent is part of the treatment-which needs a proper diagnosis FIRST*which requires an elimination of medical causes-not just mito), and if that diagnosis of sd is imposed by the state it needs to be at least close to certainty with an actual scientific basis(like Cassie c-the state did not order dangerous chemicals pumped into her veins without an all but 100% diagnosis)

      The original post was critical of the parents' decision to sue, but is also repeatedly asserts only one side is being presented-so how does all info come out unless there is a lawsuit? What infuriates so many people about this case is the secrecy-in my state and many others cp proceedings are open and there is a lot more accountability and you just don't hear about theses types of cases. The star chamber in this case exemplified by the gag order (also extraorinary) allows government take extremely radical action and maybe years later-IF the parents sue we might get the facts?

      Given the legal standards and burdens of proof required in cp Cases(*not an equal playing field where maybe parents right maybe bch right) there was no was no basid for the initial action-state needs to prove diagnosis and treatment-parents needed to prove nothing.

      For a blog so heavily based on scientific method I think irpt is odd that decisions made with essentially no scientific backing are defended.

      Delete
    3. I never did get a response as to how the parents could get "truth and accountability" without a lawsuit.

      I also never got a response as to any general proof (not specific details) as to peer review scientific vetting as to either the diagnosis, prognosis or treatment of somatoform.

      And even if the above scientific methods had support -there is also no proof that mass dcf had safeguards in place so diagnosing entities were not used for treatment and independent entities were used to confirm conflicting diagnoses.

      Delete
    4. Still no response as to any inquiry of dhs or bch general standards and guidelines on diagnosis or treatment of Somatoform/medical child abuse. There are dozens of articles on how junk science has sent multitudes of people to prison and death row. The blogger on this site seems oblivious or uninterested in safeguards that require a scientific basis for evidence admitted in a juvenile protection proceeding.

      Delete
    5. As far as I know, diagnosis and treatment of psychological disorders are defined in the DSM, in this case DSM-IV, which was current at the time this began. As I stated in my post of October 14, there were three criteria to be applied in the diagnosis of somatoform disorder. Two out of three were not met, in my opinion, yet the diagnosis was made in something like 24 hours. I have never seen any justification for the somatoform diagnosis based on the DSM-IV criteria on any forum, nor have I seen a rational justification of the permanent termination of parentap rights. I believe that here is a reluctance to oppose the state on questions of this type based on the perception that the state and any outside consultants it may employ are more "professional" and knowledgeable than anyone else, and therefore not to be questioned.

      Delete
    6. I haven't replied because I've been rather busy, for starters, and second, any response would involve speculation. I think I've made it pretty clear that I'm not going to do that. We don't have enough of the facts. At this point, we're just going in circles.

      Delete
    7. My first question was very simple-how would the facts come out without a lawsuit?

      I will post later with a detailed and coherent breakdown of the issues but considering the blogger criticized the lawsuit filed by the parents there must be an alternative of which I am unaware.

      Delete
  19. "Not sure I would go that far. The question really should be, was Dr. Korson correct in his diagnosis, or not? He could be wrong without being a quack."

    So if this is the case, where is it that they consulted with him per his diagnosis? Korson's testimony in the public record was they never called him or consulted with him till after the State took custody - and then it was a courtesy to inform him that his services were neither wanted or welcome - that is until the Judge ordered her returned to Korson's care (one of the glaring inconsistencies of your analysis - the parents were charged with "over-medicating" and then the State orders her returned to the physician who was treating her with the stuff in which BCH objected in the beginning was "overmedicating"). One of the first things I remember being taught in school was "consult, consult, consult!!" but it seems that these guys did not do any of that. Why? Remember Dr. Korson was the Physician-of-Record who had been treating Justina and her sister for at least two years. It sounds like they believed and treated him like a quack to me. IMHO you are being fairly naive if you don't believe that in discovery and on the stand that Defendant's counsel will not go after his professional credentials and competence with gusto. As the saying goes, "If the law is on your side, argue the law. If it is not on your side pound the table."

    "... yes, it does take time to diagnose. But part of the process of diagnosis is to separate the alleged victim from the alleged abuser."

    This is an interesting statement of yours. The malpractice in this case will be found at this juncture point. In the public record, Korson said that the psychiatrist and psychologist at BCH were acting on a "hunch." As a professional in the field myself, I would have to affirm what the good doctor said. That is why most other people in our business want to avoid malpractice suits by "consulting, consulting, consulting." Not consulting with the Doctor-of-Record and then acting on your hunch by blocking out everybody that the family would want to consult, that the girl would want to be associated with is not good practice - in fact it is malpractice (unless the Physician-of-Record is a quack - you see? Right where we started). That these professionals thought it was and doubled down on their diagnosis is a hop,skip, and a jump to civil court. Which is right where they are now

    "... and the hospital has been cast as a heartless, uncaring behemoth more interested in their bottom line than in actually helping children"

    This is an interesting comment of yours. I would counter that if they were interested in the bottom line, then they would avoid such practices they are accused of like it was a plague. I think it is more in line with human nature and ego that is found unfortunately a lot in our profession : they did not want to be wrong.

    If you think that Doctor's have big egos, lawyers have got bigger. Looking at the two sides of this coin, we have a Plantiff attorney who was the President of the Mass Women's Bar...I don't believe she would take up the case on contingency unless she had the goods and thought she could win. On the other side we have a law firm who specializes in Malpractice with the two main attorneys who are more famous for negotiation and mediation...something that I would speculate on but will not.

    ReplyDelete
    Replies
    1. @CRA

      Regarding the decisions around Justina's care, as I've said, repeatedly, we do not have objective details on what BCH did or did not do. We do not have details on the medical decisions that were made throughout the whole case. What we have are what the parents have said and the media reports of what the parents have said. Any conclusions drawn from the public information is merely speculation and assumption.

      "As a professional in the field myself, I would have to affirm what the good doctor said."

      And you would be acting on an assumption, which also is not a professional thing to do. If you have details to back up this claim, I'd love to see them. My suspicion, though, is that you do not, since that would be a matter of her medical records and thus protected by HIPAA.

      As for the characterization of BCH, I have seen others make such accusations. And yes, I agree that if they were acting to protect their bottom line, they would avoid a firestorm like this at all costs. That also goes toward making a claim of medical child abuse in the first place. Also something that should be avoided unless reasonably sure.

      Again, I won't speculate on the motives of the lawyers involved.

      Delete
    2. I don't have to speculate. Diagnosing and slapping a diagnosis of somatoform on a patient after a twenty minute interview and 12 hour hospitalization is defined as a "hunch" - I don't need to view records on that score - regardless if I use DSM V or IV as a point of reference. This information is in the public record and has never been challenged or denied. I would be terminated with prejudice if I attempted to treat such a client based upon such flimsy evidence. The diagnosis itself takes months of observation, testing, and consultation. I would first consult the Physician-of-Record and previous medical providers for all the information I could glean away. Dr. Korson has already told everybody that the physicians and cohorts of BCH never talked to him except in a perfunctory way after the fact.- Unless he is a liar as well as quack I imagine that you take his testimony into your account right? There is zero public evidence that the providers in question even consulted anybody but themselves. Perhaps you know more than you are telling eh?

      Delete
    3. "Not sure I would go that far. The question really should be, was Dr. Korson correct in his diagnosis, or not? He could be wrong without being a quack."
      That is impossible to determine. In a complex medical condition, there are differing medical opinions. There is never a definitive answer as to whether any one opinion is right or wrong.
      "... yes, it does take time to diagnose. But part of the process of diagnosis is to separate the alleged victim from the alleged abuser."
      In this case, the “alleged victim” is also a citizen who was imprisoned against her will in a psych ward, and forced to undergo medical treatment to which neither she nor her parents consented. In essence, you are arguing that a person should first be deprived of her liberty PRIOR TO a decision as to whether there is a justification to deprive her of her liberty. That seems just a bit unjust, doesn’t it?
      "... and the hospital has been cast as a heartless, uncaring behemoth more interested in their bottom line than in actually helping children"
      This hospital locked a sixteen year old girl in a psych ward for a year. Given that fact, it is no surprise that they might seem to bear some resemblance to the wicked witch in Disney’s Rapunzel. The hospital could have said that locking her in a psych ward for a year was medically inappropriate, and refused. They didn’t. Was it medically appropriate? Was it justified? The degree of Due Process has been insufficient for the public to have any level of trust in this outcome. The public looks at a sixteen year old girl, and instinctively knows she should be out going to the shopping mall and socializing with her friends, and have serious concerns about whether the hospital is failing to nurture her and provide for her emotional needs. It is a suspicion, of course, but a reasonable one. In general, this society has decided that children should not be raised by institutions, but in a home environment. So, when a child is being raised by an institution, instead of in a home by parents, it raises concerns.

      Another problem with this situation, from a medical perspective, is the doctor/patient relationship. How is a patient supposed to trust a hospital, after they have seized her from her parents, deprived her of her liberty, and forced her to undergo medical treatment that she does not consent to. While she was a "minor", we should always remember that she is also a human being. We should not dismiss these concerns, simply because she was a few months shy of the age of 18. From her perspective, she was a prisoner, not a patient.

      Delete
  20. At what point was she denied life without due process of law?

    ReplyDelete
  21. Um, which was she? A few months shy of 18 or 16?
    Seriously, that's like saying that I'm a few months from retirement and I'm in my mid 50's.

    What I read from you is pure hyperbole. At least, when I use hyperbole, it's humorous, not trying in any way to be serious, but to outline a ridiculous assumption.
    From you:
    "She was denied life and liberty...". Obviously, the point is moot, as she's dead. (Note the hyperbole)
    "The vapors" (flipping seriously?!). Come visit our century, you'll likely enjoy it. Why, you'll even be allowed out of the kitchen (I'll be in there anyway). (Note the hyperbole, although you'd have to personally know myself and my wife to get the inside joke on that, the joke being "it's *my* kitchen and occasionally, I let my wife use it").

    Meanwhile, you ignore that children are at risk and that the state should protect them from abusers, both physical and medical and that with any system that involves humans can have errors. We lack sufficient information to be certain either way, but honestly, if I were Emperor, I'd always err to protect a minor child from harm.

    ReplyDelete
  22. Really? Going to retire at age 52? Lucky you. And, yes, 24 months is not that much, in terms of her being mature enough to understand -- understand that she had been deprived of her liberty, her free speech, and her right to refuse consent for medical treatment, for starters. So, in this situation, the difference between 18 and 16+ is not much, or a "few", and it is also the difference between freedom and imprisonment, medical treatment (a sometimes painful procedure that one consents to), and torture (a painful procedure done to one, that one does NOT consent to). Just a few months, and a lifetime, of difference.

    ReplyDelete
    Replies
    1. Actually, I retired from the army in 2009, retiring in civilian life, with my current finances? Likely when I'm around 450 years old or so. :/
      As for the difference between 16 and 18, most states recognize someone as an adult at age 18 and as a minor child at 16. That's an immense difference. As in, minor children may not be allowed to give informed consent to treatment in many states, whereas an adult can.
      That is the law, whether you like it or not and all of the histrionics on the universe won't change the law.

      Delete
  23. What is missed by the blogger is the legality of dcf's actions-even with the assumption bch made a correct diagnosis (which is a big assumption). What was done to this girl was so radical it totally trampled on the the most fundamental rights of the parents and child. To remove a teenager from her home and limit contact with parents, siblings (one hour a week?! Sex offenders get more access to their children) I have been involved with child protection cases for 20 years and have never seen anything like this.
    For example, Cassie c was a 17 year old with Hodgkins. She wanted to decline chemo and would almost certainly die without it. Docs gave her an 85% chance of a cure with chemo. Dcf ordered her to comply with chemo. Her case had 1. A certain diagnosis 2. An almost 100% risk of death without the proposed treatment 3. A very high chance of survival with the proposed and proven oven treatment. Justina's case had none of these factors and if you are going to do something like you better be damn sure you have all three. This case (legally) simply stunk- she didn't even live in mass!! Her home state child protection did not want to touch this case with a 10 foot pole.

    There is a out of credible information that justina was used as a guinea pig for a study one of the docs that diagnosed her was part of-but the biggest problem was once bch took her it had a huge conflict of interest to "prove" the initial diagnosis. Bch recommended (and dcf adopted a cause plan that barred the parents from seeking a second opinion. At minimum dcf should have consulted other physicians not connected to bch. And she did not get better, you can say the people who blame bch for her current condition are wrong-if they are so What? To do what they did, took a year and a half away from a young girl and her family, spent God knows how much money (which should have been used on more social workers so the would not keep losing children I their system who turned up dead) the expectation would be a HUGE improvement.

    ReplyDelete
  24. What is missed by the blogger is the legality of dcf's actions-even with the assumption bch made a correct diagnosis (which is a big assumption). What was done to this girl was so radical it totally trampled on the the most fundamental rights of the parents and child. To remove a teenager from her home and limit contact with parents, siblings (one hour a week?! Sex offenders get more access to their children) I have been involved with child protection cases for 20 years and have never seen anything like this.
    For example, Cassie c was a 17 year old with Hodgkins. She wanted to decline chemo and would almost certainly die without it. Docs gave her an 85% chance of a cure with chemo. Dcf ordered her to comply with chemo. Her case had 1. A certain diagnosis 2. An almost 100% risk of death without the proposed treatment 3. A very high chance of survival with the proposed and proven oven treatment. Justina's case had none of these factors and if you are going to do something like you better be damn sure you have all three. This case (legally) simply stunk- she didn't even live in mass!! Her home state child protection did not want to touch this case with a 10 foot pole.

    There is a out of credible information that justina was used as a guinea pig for a study one of the docs that diagnosed her was part of-but the biggest problem was once bch took her it had a huge conflict of interest to "prove" the initial diagnosis. Bch recommended (and dcf adopted a cause plan that barred the parents from seeking a second opinion. At minimum dcf should have consulted other physicians not connected to bch. And she did not get better, you can say the people who blame bch for her current condition are wrong-if they are so What? To do what they did, took a year and a half away from a young girl and her family, spent God knows how much money (which should have been used on more social workers so the would not keep losing children I their system who turned up dead) the expectation would be a HUGE improvement.

    ReplyDelete
    Replies
    1. Do you have additional information that hasn't been available publicly about how BCH or DCF went about their decision-making, or which treatments they undertook? If so, please share (preferably with links) so that others, such as myself, can make an informed judgment one way or the other. As it currently stands, that information is not available to me, hence my neutral position.

      "she didn't even live in mass"

      Yes, and? The suspicions arose while she was in Massachusetts. Therefore, Massachusetts DCF had to step in. From the reports that I've read, they did try to get Justina moved back to CT and have CT DCF take over the case. (And it was not simply CT DCF's refusal to take on the case that prevented this.)

      "Her home state child protection did not want to touch this case with a 10 foot pole."

      This is true, though I don't recall seeing anything about their reasoning for declining it. However, I suspect that CT DCF's previous dealings with the Pelletiers in 2011 may have played a role.

      "There is a out of credible information that justina was used as a guinea pig for a study"

      What is that credible information? So far as I've seen, that claim stems from Justina's parents. I've yet to see any corroborating evidence. And, if she was enrolled in a study, is there evidence that the study posed or caused increased risk for Justina? There are extra legal requirements for studies that involve children that are designed to protect them from undue harm. Then the questions become: if she was involved in a study, how, precisely, was enrollment conducted? Did they follow proper ethical procedures? What was the study protocol? And forth. But first, we actually need to confirm that the base claim, that she was in a study, is actually true.

      "the expectation would be a HUGE improvement."

      Why? It all depends on the actual underlying medical condition. Some conditions are resolved very quickly. Others take a great deal of time, and progress can be quite slow. This assumption is also predicated on knowing the details of her medical records, which are not publicly available due to patient privacy laws.

      I appreciate that your opinion is that BCH and MA DCF botched this case big time, but unless you have some firm evidence (i.e., more than just the Pelletiers' word) to support those opinions, my opinion of the case will remain neutral.

      Delete
    2. I'm a bit surprised that this controversy is still being debated after more than two years, but I will add my additional two cents worth.

      Many opinions have been stated and debated in these posts, but there are several overarching questions that have been danced-around a bit but have not been addressed head-on. First, what compelling interest does the state have in an individual medical case that would justify taking a patient away from a state-licensed, board-certified physician and assigning her to another similarly licensed physician based on a disagreement over a diagnosis? What compelling interest of the state justifies that state using it's coercive power to favor one world-class medical facility over another equally prestigious facility it the same state? What medical competence do social workers, judges and politicians have to question the diagnosis of a licensed physician with impressive professional credentials who is the director of a department at one of the prestigious medical facilities? How is a judge competent to select a treatment plan for a patient who may have a rare and difficult-to-treat condition? Finally, who is legally responsible for the physical damage that may be done to the patient due to the treatment dictated by one of these state officials who are not licensed to practice medicine?

      Based on opinions I have read in this and other internet sites, there seems to be a world-view that holds that the State can impose decisions on the citizens simply because it is the State, which is supreme and must be obeyed without question. The reader may have guessed by this time that I do not share this world-view.

      Delete
    3. Those are all good questions, yes. And they would be answered by what is in the medical records, which are unavailable. All we can do is speculate.

      1) Compelling interest: If the evidence shows that a minor child is being harmed or is at risk for imminent harm, that is the compelling interest of the state to act. We do not know what evidence is in the medical record supporting either diagnosis, nor what evidence they used to make their judgment.

      2) Medical competence: For better or worse, whatever their medical training or understanding, social workers and judges are the ones tasked with making decisions. It is up to the physicians involved to present the evidence as accurately and clearly as possible so that they can make that decision. The question you ask seems to place greater emphasis on credentials than on the facts in the medical record. While the standing of the physician can influence things, it ought to be the medical facts that drive the decision. Let me illustrate what I mean with an admittedly absurd example. Suppose we have a physician, top of his class at Johns Hopkins. He runs his own department and is in line for becoming Chief Medical Officer for his hospital. He starts a patient on a treatment plan. The patient, for whatever reason, is taken to a different doctor, who learns about the treatment plan implemented by Dr. Johns Hopkins. Suppose that this treatment plan involved giving the child arsenic in doses that would ultimately kill the child. Now, this other doctor is just out of residency, but makes the move to stop the treatment and report the case to DCF. The way you have phrased your question suggests that Dr. Johns Hopkins' treatment plan should not be questioned because of his high standing and reputation. As absurd as this example is, I hope it illustrates that the facts of the medical record matter more than the standing of any of the doctors involved.

      3) Competence to select a treatment: Again, the judge must rely on the expertise of the medical professionals involved in the case.

      4) Legal responsibility: Whether the state officials opted for Dr. Korson's plan or BCH's plan, legal responsibility would depend on the nature of the injuries and the treatment involved. If the injuries resulted from negligence or deviation from the standard of care, primary responsibility falls on the treating physician. The state may bear some responsibility if it knew or should have known that the treatment would result in injuries. If the injuries are an unavoidable consequence of the treatment and the treatment was provided according to the standard of care, then, as far as I am aware, there is no fault.

      As for this world view you note, it is not one that I have expressed. And if you believe that I have, then you have misunderstood my comments. There must be a compelling reason for the state to act. And as I've been saying all along, none of the people opining on this case know enough of the factual details to say whether there is or is not a compelling interest.

      And yes, it is quite clear that you have made up your mind on this case, despite not having full knowledge of the facts. If I am mistaken, I invite you to present additional evidence, not hearsay or speculation, that supports your position.

      As it stands, I must state, yet again, that we cannot conclude whether Justina's parents are in the right, BCH/DCF are in the right, both have some merits, or both are mistaken.

      Delete
    4. You’ve made several valid points, so let me address them.
      First, let me address the usual argument that we have only the parents’ side of the situation due to HIPAA regulations. When I am referred to a specialist I haven’t seen before, I have a stack of paperwork to fill out, one sheet of which is a yellow form which informs me of my HIPAA rights to the privacy of my medical records. It allows me to designate those to whom my records may be made available, if I so choose. The parents could have done that to support their case, except that their guardianship was stripped from them and given to BCH by the DCF and/or the judge. Now, BCH could not be required to release their medical records as they were protected by HIPAA. That seems like a conflict of interest since HIPAA in this case seems to have been working as much, at least, in the best interest of the provider as in that of the patient.
      Of course the state has a responsibility to prevent imminent harm, but I would think that this responsibility would be best served by bringing the patient’s physician of record in to confer with the hospital staff to determine the rationale behind his treatment plan and the staff’s plan and come to some agreement about what would be best for the patient. Apparently this was not done, according to both the parents and Dr. Korson. Instead, Dr. Korson’s treatment was withdrawn immediately, the new treatment plan devised by the staff psychologist was imposed, and Dr. Korson was summarily dismissed. According to one blog post I read by someone I assume was a nurse, based on her apparent knowledge of hospital procedure, this violated normal standards of treatment. Going back to your illustration, if Dr. Johns Hopkins’ treatment plan was obviously dangerous, of course it should be stopped until the conference I mentioned was completed. If no imminent danger could be identified, though, Dr. Hopkins’ experience and reputation should be considered instead of summarily dismissing him and rejecting his treatment plan out of hand without presenting a strong rationale. Just saying, in effect, ‘Dr. Hopkins is a quack and a moron, so you’re not seeing him any more’ would seem unethical.
      A judge must rely on the expertise of medical professionals to determine the correct treatment plan, but is it proper for him to rely on the expertise of a single physician of his choice, or should he obtain a consensus of several respected experts in the appropriate specialties? To do the former would invite a professional bias that might not be in the best interest of the patient. How can the education and experience of a lawyer enable him to decide which physician is best able to treat a patient who may have a rare disease?
      What is known about this case is that six weeks before the patient went to BCH due to what appeared to be influenza, she was figure skating competitively and attending school. This is documented. Now, a year after being released from BCH, she is still confined to a wheelchair, and instead of the cecostomy that was considered to be overtreatment ordered by her parents, I believe she has had a colostomy, which is more invasive. Whether this would have happened even if the original treatment plan had not been terminated we can’t know, but we can assume, I think, that it’s physical rather than psychological.
      You are correct in stating that I have made up my mind, but not to the extent that I can’t change my views if presented with sufficient evidence of my error. So far I have not seen that. There are too many disturbing aspects to this case for me to just say I don’t know all the facts. Some of the things that were done just defy logic, although, as I said, I could be convinced otherwise if more information appears. That will have to wait, I imagine, until the suit is heard in court and all evidence on both sides is presented.

      Delete
    5. 1. Compelling interest: This only holds true IF the diagnosis was correct and given tbe speed of diagnosis NO physician would have been able to make such a diagnosis. every thing I have read about somatoform disorder (which is not even a proper diagnosis anymore) is that it is difficult to diagnose and difficult to treat, I cannot imagine any scenario where it would be appropriate to change a diagnosis in two days, take the girl of her meds-without even consulting her physician, (globe) This actton was arrogant and reckless

      Delete
    6. 2.dcf does not have medical experts on staff-the get a lot of free advice from... BCH! At minimum they should have consulted an outside expert. The minute BCH changed her diagnosis they were very exposed for a malpractice claim if the were wrong-there was no way they would ever admit that so going forward the treatment would have a huge danger of being done to prove the focus right-not what was best for the patient.

      Delete
    7. This is not baseball -tie goes to the runner (DCF)! There needs to be almost certainty that the family's reliance on their doc is wrong and that BCH is right. The very nature of these disorders certainly prevent a two day diagnosis. And preventing and thwarting opposing viewpoints is so dangerous! True professions are never worried or intimidated npby second opinions-they welcome them.

      Docs often would rather give you a diagnosis that is wrong than to say "I don't know"". But sometimes I don't know is the answer and the sanctity of the family deserves better than maybe. There is a girl in WI who died last month of a severely disabling (but not terminal) disease. She chose (at 14) to discontinue treatment. Disability rights groups reported the situation to cp. Either cp did not accept the report or did an evaluation and determined the girl coukd make this choice. Either way the recognized that in complex, difficult situations it is often most appropriate for a family an their docs to make the decisions.

      Delete
    8. I believe you are right about the difficulty in diagnosing somatoform disorder. I looked at DSM-IV, which was current when these events took place.
      Somatoform disorder as defined by DSM-IV requires that three criteria be met in order to qualify for somatoform disorder diagnosis:
      1. A medical condition, other psychiatric illness, or the effects of a substance (e.g. alcohol or a medication) will not explain the patient’s symptoms.
      2. The patient does not meet the criteria for malingering or factitious disorder.
      3. At least one primary area of the patient’s life (e.g. the patient’s work or social functioning) is significantly disrupted by the symptoms or the symptoms cause a lot of distress.
      (taken from Psyweb.com)

      Criterion 1 is met only by rejecting the original medical diagnosis. Criterion 2 appears to be met based on the available information. Criterion 3 appears not to be met based on the fact that the patient interacted with friends, was in school and was successfully competing in ice skating competitions prior to her admission to BCH. Therefore, one might conclude that somatoform disorder is no better an explanation of the patient’s condition than the original diagnosis of mito. If this argument is at all credible, then committing her to a locked-down high security psychiatric ward seems entirely unjustified.

      An even superficial investigation of these criteria with respect to this patient would obviously take more than 24 hours.

      Delete
    9. @DAR

      Just a quick comment regarding your ice skating bit. Remember, before she was taken to BCH, she began having difficulty walking. That fact, for some reason, frequently gets left out of the narrative.

      Delete
    10. Based on what I've read about mito, that's not unusual. These symptoms apparently come and go. I'm not certain that the symptoms that led Justina's parents to seek medical help were due to a mitochondrial crisis of some sort rather than flu, but not being an MD, that would be a wild guess. I have read that mito patients in general have a harder time with infectious diseases. I'll have to try to dig up my sources on mito, which I haven't looked at for a year or so,to research the walking problems. When (if) I find the information, I'll post it.

      Delete
    11. The speed of the diagnosis is even worse than you think. Look at the below article. There are 4 major ways to misdiagnose. Worse- it is a diagnosis of last resort when essentially all medical causes are ruled out. For example, what if she did not have mitochondrial disorder but another disorder that improved when taking mitochondrial treatment, taking her off the meds would be malpractice-but more importantly never warranted at the speed she was taken off.



      https://www.psychologytoday.com/blog/saving-normal/201312/diagnostic-ethics-harmsbenefits-somatic-symptom-disorder

      Delete
    12. As I understand it -- now as an adult Justina has the right to demand her own medical records held by the State/BCH. Her attorneys had to hustle - BCH could have disposed of them when she turned 19 (and would have more than likely as juvenile records are usually not kept the standard time). As it is that was probably her attorney's first request once she turned 18.

      Delete
  25. @Todd W, there you go again. All trying to confuse the *issues* with silly little things like facts. ;)

    ReplyDelete
  26. Typically a child visiting another state subject to a cp report in that state would have that report quickly be transferred to their home state. You view this as an issue with the parents-I view it as the home state not viewing this as an emergent /urgent issue (and subsequent actions all but confirm my suspicion). Ct might have bern very willing to accept the report and get a family assessmant, voluntay serices or even a chips case with state supervision(not a change of physical custody) But mass dcf went for the nuclear option two days into it-not smart.
    Also, it appears you do not understand the difference betwen placement transfer and jurisdiction/venue transfer. (CT accepting the case v a facility in ct accepting placement) Look at the ijc.

    ReplyDelete
  27. Her residence is crucial, even if the report was made in mass it would typically be transfered to the child's home state. If the home state does not want it that is a red flag (there is a big difference between a home state accepting jurisdiction/venue (look at the ijc) and a facility accepting an out of state placement.

    ReplyDelete
  28. Odd,we've heard "I don't know" many times from our various doctors. In one case, just this past week from our primary care physician, in regards to how to address chromhidrosis.

    ReplyDelete
  29. Only one problem with your theory, there is no one treatment or protocol for mitochondrial disease, it's addressed symptomatically.

    Still, it's a shame that mitochondria are such mysterious things, which we know nothing about. If only they were sequenced, we'd be able to ascertain if disease were present.
    Alas, gene sequencing - oh wait, that's a rather mature technology and we *have* gene sequenced mitochondria!

    Alas, our court system is that which requires updating, along with our mainstream press.

    ReplyDelete
    Replies
    1. If the docs thought the mito diagnosis was not supported by objective evidence at minimum they should have consulted with the treating docs,to at least find out what the basis for diagnosis was- there was another sibling diagnosed which probably factored in.

      Delete
  30. Your post makes no sense. Are you saying the girl did not have an objective test confirming mito or that mito can't be confirmed by an objective Test?

    If the second, conditions can manifest atypically. My kid 2 gets a headache when she gets strep throat (kid 1 & 3 get typical sore throats). Per the above article, an easy misdiagnosis-kid 2 gets diagnosed with sinusitis or ear infection due to lack of throat pain.

    Kid 2 prescribed antibiotics-starts to clear up strep-another doc says she does not have sinusitis or early infection (correct) it's in her head (not correct) takes her off antibiotics and kid 2 is now open to dangerous consequences of untreated strep. The 1st diagnosis was wrong but the treatment was right.

    ReplyDelete
    Replies
    1. Lawgal, there is, currently, no objective test for mitochondrial disorder, nor is there a gold-standard accepted means of diagnosing mito disorder, nor is there a standard constellation of symptoms that apply to all people with a mito disorder.

      Mito disorder and somatoform disorder are both relatively new diagnoses, neither have objective tests to diagnose. For mito disorder, a muscle biopsy can help in diagnosis, but may not correctly identify it. Of note, Justina did not have a muscle biopsy done to diagnose her with mito disorder. Dr. Korson apparently adheres to the symptom clumping school of thought for diagnosing mito disorder.

      Delete
    2. And your point is that because mito is difficult to diagnose that changing the diagnoses to SD in a couple days is possibly acceptable? Did you read dr. Frances' article? He fully explains the dangers of misdiagnoses, cites articles which assert it is far more dangerous to deny needed medical care for a medical condition than to deny or delay mental health care. Changing her diagnoses so soon was probably unethical as well as malpractice.

      Delete
    3. Also, her sister had mito which makes the diagnoses more likely. Again, at minimum consult Korson and the other docs working with the kid for years before changing her diagnoses in 2 days and removing treatment that may be crucial for her health or even life.

      The dcf attorney, in the initial emergency petition, not only failed to include Dr. Korson's option re mito but that her sister had mito as well. This was totally inappropriate at best and unethical at worst. Again, hiding facts that contradict your position does not suggest confidence in your position it suggests wanting to win.

      Delete
  31. Actually there is a standard for somatoform disorder (oops somatic symptom disorder they changed it) a requirement to work with the regular physician and rule all medical diagnoses out.

    ReplyDelete
  32. "...a requirement to work with the regular physician and rule all medical diagnoses out."

    Flipping seriously?!
    Rule *all medical diagnoses out*, do you even have the vaguest clue in the universe what that means?
    That's like, you're laying on the ground gasping for air, as one works with lawyers throughout the entire bloody planet, ruling out all potential laws, from each and every nation, times ten.

    ReplyDelete
    Replies
    1. Did you read dr. Frances's article cited above? He not only explained why it is unethical to diagnose ssd without thoroughly eliminating medical causes, but it is far more dangerous to fail to provide needed medical care than to delay mental health treatmentioned.

      Someone laying on the ground gasping for air almost certainly has a medical condition.

      Delete
    2. So, Wzrd1, do you then advocate simply dismissing a licensed, board-certified specialist's diagnosis out of hand because, 'nah, I just don't think it's that' and re-diagnosing the patient with a psychological catch-all term that's used when you can't find an easily-diagnosed physiological disorder without applying any reasonable medical criteria? This patient was not found "laying on the ground gasping for air". She was referred to a specific specialist at BCH by her primary physician, a respected specialist from a world-class medical facility. Since mito is treated symptomatically, withdrawing all her meds abruptly could have endangered her life, and I'm not talking about the vitamins. I don't know all the things she was taking, but there are meds that must be tapered rather than stopped abruptly. I think your analogy is a bit overdone.

      Delete
  33. Let's review, she ostensibly had mitochondrial disease, without a DNA pattern to confirm it or otherwise measurable malfunction that would indicate mitochondrial dysfunction.
    Zebra hoof beats was the answer, not horses.
    Then, multiple board certified physicians disagreed, but the maverick board certified physician is always right.
    The court's physicians are also wrong, maybe a different board certified them or something?

    Frankly, after reading your drivel about medicine, stick with law. You have less than no clue about medical diagnosis, treatment or well, anything whatsoever about medicine.
    Case in point: "Someone laying on the ground gasping for air almost certainly has a medical condition." Let's see, we can range from cardiac arrhythmia through panic disorders, the latter being of course, a mental health issue, not a general medical issue.
    "Actually there is a standard for somatoform disorder (oops somatic symptom disorder they changed it) a requirement to work with the regular physician and rule all medical diagnoses out."
    There's a saying in medicine, when you hear hoof beats, look for horses, not zebras. Horses are more common.

    In closing, when you wallpaper a comment area, you really don't have anything to offer but clutter.
    That does your arguments no service whatsoever, as it only makes people tune you out.

    ReplyDelete
  34. First of all, you state “she ostensibly had mitochondrial disease, without a DNA pattern to confirm it or otherwise measurable malfunction that would indicate mitochondrial dysfunction“. I’m surprised that you would know this much detail of this patient’s diagnosis, as it is likely covered by HIPAA regulations concerning disseminating an individual’s medical history. If it has been published and I missed it, I would appreciate a link or citation. As far as Dr. Korson being considered a maverick, I haven’t seen any evidence of that. I checked as extensively as I could on the internet to ferret out anything questionable about his reputation, and found instead that he is pretty conventional and well respected. In addition to board certification in biochemical genetics, Dr. Korson was at the time, chief of the Metabolic Services at the Tufts University Medical Center in Boston and Associate Professor at the Tufts University School of Medicine. He may not always be right, but he is certainly sufficiently competent, based on these credentials, to at least be listened to. The “multiple board certified physicians” who disagreed were, as far as I was able to learn from published information, Dr. Korson, Dr. Peters, the attending physician in the BCH emergency room, and Dr. Bujoreanu, a psychologist who was at the time conducting research in pediatric somatoform disorder. I assume the court’s physicians you mention were these two BCH employees. If there were others, I would appreciate any information you may have on them. What I would like to know is, by what criteria are the two BCH personnel deemed so superior to Dr. Korson and others on the patient’s treatment team that their diagnosis and treatment plan can or should be discontinued immediately in favor of the hastily prepared diagnosis and treatment plan imposed by BCH? I must also take issue with your analogy concerning horses vs. zebras. If you see someone lying on the ground gasping for air, would you really think the most likely reason is that it’s all in his head? I, personally, would first check to see if he’s choking on something or perhaps having a heart attack. Would a mare appropriate response be “There’s a man on the ground having trouble breathing. Somebody please call a psychiatrist.”?

    ReplyDelete
    Replies
    1. "I’m surprised that you would know this much detail of this patient’s diagnosis."

      News reports from the time noted that she had not undergone a muscle biopsy. Whether she had any other blood work or CSF workup done has not been reported.

      Delete
    2. That is one thing that we can count on Todd for, inline citations aplenty. :)
      When discussing this previously, I was provided with citations aplenty to further study the case.

      That said, if a muscle biopsy wasn't performed, it's not highly likely that a much more invasive examination of CSF was done and blood work, which is far less invasive and more routine wasn't mentioned at all.
      Still, we lack access to the court records and hence, must accept the judgement of the courts.

      Delete
  35. "If you see someone lying on the ground gasping for air, would you really think the most likely reason is that it’s all in his head?"
    First, I verify that there's a problem, starting with, "Are you OK?", if a negative is indicated, "Are you having difficulty breathing?".
    All, while observing. Is cyanosis present? What is the rate and quality of respiratory efforts? Is chest wall movement symmetrical, absent, asymmetrical?
    From there, one can begin actually measuring vitals. What's the pulse, respiratory rate, PO2 level?

    Laying on the floor gasping can be caused from anything from emotional distress through asthma and even diabetic acidosis.

    A real world example. Woman, age 56, diabetic, advanced osteoporosis, advanced degenerative disc disease. Newly prescribed morphine sulfate and diazepam for pain and muscle spasms. Found on floor after a fall, denies loss of consciousness, however the individual fell on another occasion while being observed and there was transitory LOC.
    The individual had slurred speech.
    So, do you assume a drug overdose? Investigate further?
    Reflexes absent on legs, not atypical in this case, due to lumbar disc disease. Pupils are reactive and equal. Pulse is mildly elevated at 98 BPM, BP 110/65.
    Is it an overdose? A big hint is up there.
    Glucometer displays 60.

    After a bit of glucose, my wife was doing much better and her speech returned to normal.
    Remember the horses, they're more common than zebras.
    So, one does a full workup on the patient.

    ReplyDelete
    Replies
    1. You’ve actually made my case! Based on your description of your differential diagnostic procedure, I assume you are a health care professional. What you describe is the conventional process of looking for a physical cause for a physical symptom. You’ve first determined that the patient was in actual distress, observed gross physical signs, then proceeded to measure basic vital signs. You know you’re looking for a horse, you just have to figure out what color he is. In your real-world example you bring in the medical history, made some additional measurements which led to a working diagnosis of hypoglycemia which responded to your treatment. Case closed! In this case the zebra would be somatic symptom disorder, which you might suspect if all your measurements were normal, the medical history was unremarkable, and you were able to rule out any physical cause you knew about, probably based on the absence of one or more expected signs of each of those possible causes. This, apparently, is not what happened in the case of Justina Pelletier. It looks like the detailed medical history was not obtained from the physician of record, Dr. Korson, and his diagnosis was simply discarded and replaced with one ascribing psychological origin to her symptoms without sufficient rationale. Suppose, in your wife’s case, you had denied her the glucose because you thought her symptoms were due to a panic attack? The outcome could have been undesirable, as you might imagine. It certainly was in Justina’s case since it seems she is still confined to a wheel chair, much of her hair is gone, and she required more invasive surgery. I don’t think she has imagined these afflictions upon herself.

      Delete
    2. "I don’t think she has imagined these afflictions upon herself."

      Okay, I think we need to clear something up here. Somatoform disorders are not "imagination" or "just making things up" or "faking it". To describe it as such belittles those who suffer from some form of somatization.

      Somatoform disorders occur when the symptoms exhibited occur despite there being nothing wrong with the physical structure underlying the affected part(s) of the body. For example, if the patient is experiencing paralysis, but the muscles are fine, the nerves are fine, blood flow is fine, neurology is fine (no tumors, clots, etc.), then the issue lies in how the brain is functioning and the signals it's sending. There may be nothing structurally wrong with the brain, but the wiring or firing is getting messed up for whatever reason.

      The symptoms of somatoform disorder are very real, so please don't be so dismissive by likening it to "just imagining" things.

      Delete
    3. I will also add that, as noted above, that there apparently were no physical tests done by Dr. Korson to arrive at his diagnosis of mito disorder. He uses what is called "grouping", where symptoms are grouped together to come to the mito disorder diagnosis (i.e., basically saying that there is no one illness or condition that causes all of these symptoms, so therefore the most likely explanation is mitochondrial dysfunction). That method leaves room to doubt whether or not it is the correct diagnosis.

      And, again, there are no validated physical tests that definitively show whether someone does or does not have a mito disorder. Muscle biopsy, blood work, and CSF testing can give strong indicators, but even those are not (yet) solid.

      We do not know what tests BCH did or did not do. We do not know what records they did or did not look at. So any conclusions you may come to regarding their handling of the case are based on assumptions, not evidence.

      As Wzrd1 says, we will need to wait for the courts to come to a judgment based on the evidence presented to them.

      Delete
    4. The skepticism concerning the diagnosis of mitochondrial disease in this patient generally depends on the lack of a muscle biopsy, which implies that it is a ‘gold standard’ for diagnosis this disorder. There are, however, valid reasons for avoiding it. As Todd W. stated earlier, “there is, currently, no objective test for mitochondrial disorder, nor is there a gold-standard accepted means of diagnosing mito disorder”. This is in agreement with a published opinion of the Cleveland Clinic:
      MYTH
      A muscle biopsy is the "gold standard" for diagnosis of mitochondrial disease.
      FACT
      Although the muscle biopsy is a powerful diagnostic tool, it should not be considered a “gold standard.” A biopsy examination includes microscopic evaluation, enzyme testing, and genetic testing. Although all U.S. labs that offer muscle biopsy meet strict laboratory guidelines, there is no agreed-upon standard approach for enzyme testing. Furthermore, a muscle biopsy with full analysis costs well over $10,000 and poses both surgical and anesthetic risks. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing. In either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy. (1)
      Muscle biopsy is a surgical procedure, which carries greater risk for mito patients than for the general population:
      Mitochondrial disease (mtD) is a genetically, biochemically, and clinically heterogeneous group of disorders that arise most commonly from defects in the oxidative phosphorylation or electron transport chain involved in energy metabolism. These patients have an increased risk for cardiac, respiratory, neurologic, and metabolic complications from anesthesia. Consequently, there are several anesthetic considerations for patients with mtD.(2)
      Since mito is known to commonly be an inherited disorder, involving nuclear as well as mtDNA, the collection of symptoms plus the knowledge that her sister has been diagnosed with it by muscle biopsy provides some justification for suspecting it to be present in Justina.
      1. http://my.clevelandclinic.org/health/diseases_conditions/hic-what-are-mitochondrial-diseases/hic_myths_and_facts_about_mitochondrial_diseases
      2. Clinical Pediatric Anesthesia: A Case-Based Handbook Edited by Kenneth Goldschneider, Andrew Davidson, Eric Wittkugel, and Adam Skinner

      Delete
    5. Todd W., I didn't mean to be dismissive of the very real symptoms that comprise somatic symptom disorder, as I may have experienced a minor instance of this myself. I once was told of an abnormality in my EKG discovered during a routing physical. The anxiety that caused resulted in a period of severe insomnia that was eventually relieved by a mild sedative and reassurance that the finding was benign. I understand that some people experience significantly worse symptoms. I question, however, that the symptoms she presented at the time of admission to BCH could result only from somatic symptom disorder (to use the DSM-V term). If her symptoms were the result of this psychological disorder, I imagine that the clinical psychologist on her treatment team, Dr. Dean Hokanson, would have suggested consideration of that earlier in her treatment.

      I take issue with several of your statements. First, you state that "there apparently were no physical tests done by Dr. Korson to arrive at his diagnosis of mito disorder". I don't think you can claim this because HIPAA restrictions limit the public dissemination of details of a patient's clinical examination. You can say that we don't know what tests he did or did not do with the exception of the muscle biopsy, so, as you stated concerning BCH, any conclusions we can come to about Dr. Korson's diagnostic procedure are also based on assumptions.

      Second, your argument is internally inconsistent because in one paragraph you claim that Dr. Korson performed no physical tests to arrive at his diagnosis, and in the next paragraph you state "there are no validated physical tests that definitively show whether someone does or does not have a mito disorder". Does one then deny the existence of mito? I don't, because I have seen a large body of published research concerning it.

      From what I have read and experienced personally about somatic symptom disorder, I believe it includes symptoms arising from an over-reaction to real physical symptoms, such as my insomnia due to anxiety over my EKG. The DSM-V work group of the APA states that "Psychiatric symptoms and general medical symptoms can and do coexist." So what is the clinician to do? To ignore one in favor of the other does the patient a dis-service. Either the mental aspect can be ignored, allowing the patient to suffer needless anxiety, or the physical aspect can be ignored, as BCH did, allowing the patient to suffer the effects of the underlying medical problem.

      PS: I just found out that my next-door neighbor's daughter, who had been diagnosed with mito, just passed away from the effects of that disease at the age of 15, so please don't tell me it doesn't exist.

      Delete
  36. Erm, somatic symptom disorder *is* a psychiatric disorder. It is also far more common than a mitochondrial disorder.
    So, if I made your point for me, you've conceded the point by objecting that a psychiatric disorder was treated as a psychiatric disorder.

    ReplyDelete
  37. Indeed! Any psychiatric disorder is a very real disorder, the suffering is very real and it's not some flight of fancy.
    Perhaps that is where some people become confused, thinking that any psychiatric disorder then is in someone's imagination, which is utterly wrong.

    For those who are confused, here:
    https://en.wikipedia.org/wiki/Somatic_symptom_disorder

    ReplyDelete
    Replies
    1. Somatic symptom disorder can cause real physical symptoms resulting in very real suffering, as you say. So what do you do about it? Do you stop treating those symptoms and instead apply a possibly harsh behavior modification program? Do you dismiss the possibility that there is an underlying physical disorder and risk administering a psychotropic medication that might be contraindicated in the presence of that disorder? (I'm not saying BCH did this - we have no information about most of BCH's treatment) I do understand that somatic symptom disorder is very different than factitious disorder.

      Delete
  38. My original post asserted that dcf's actions in filing legal and physical custody were not supported by the law-*regardless of the ultimate diagnosis. This is still true and additional information is unnecessary.

    Mass dcf sought to remove life support for hayleigh Poutre one week after a severe head injury claiming irreversible vegetative state. WAY too soon(brain injuries like this need time for a prognosis, especially in children)another lawyer in mass agreed and took the case pro Bono specifically to give the child time to heal. Months later after trial and appellate courts adopted the docs opinions-she started improVing.

    Diagnosing somatoform and negating mito in two days was malpractice by the docs and overreach by dcf.

    You would think dcf would have learned after that fiasco-one of the reforms was mandating opinions from more than one institution on end of life issues-jp was not end of life but was life threatening.

    But ultimately-a second opinon may not have saved hp-time did. Some of the worst mistakes are made in haste.

    ReplyDelete
  39. To a fair extent, somatiform disorder is treated symptomatically, plus with psychiatric medication.
    That you'd think that some "harsh behavior modification program" is a first line of treatment displays a lack of understanding at all of modern treatment of any mental illness. Things have changed a great deal since the Victorian era ended, indeed, with great advances in the late 20th and early 21st centuries.
    Where we once locked people into "the snake pit" and shocked them with insulin, we now use neuromodulating drugs, blocking reuptake of some neurotransmitters and more. Why, every once in a while, treatment is effective on the first try/dosage regimen!*

    *Yeah, there is quite a bit of individual variability to various psychiatric drugs, so dosages and even medications have to be adjusted on a somewhat regular basis by a mental health care professional. But, such adjustments aren't uncommon in other fields of medicine. It took 18 months to find blood pressure medication that controlled my blood pressure for a full 24 hours, attempting various medications and dosages until we found one medication that worked for a full 24 hours. Then, it stopped working and my ACE inhibitor was replaced with a beta blocker that's taken twice per day.

    ReplyDelete
  40. "Some of the worst mistakes are made in haste."

    Patient complains of severe headache, desires to be left alone to rest. Patient presented with pupils equal and reactive, "normal respiration", BP elevated, pulse mildly elevated.
    Several hours later, patient is observed to have slow, shallow respiration and patient's head is lying in a large pool of blood. Secret Service search the grounds for a shooter.
    President Franklin Delano Roosevelt died on 29 March 1945 of a massive cerebral hemorrhage at 15:35.
    Of course, today, we'd still lose him, as we'd not want to be hasty and control that brain bleed. We'd need a pulmonologist, to keep the law people happy.

    ReplyDelete
  41. The law, in civil cases, does not operate beyond the shadow of a doubt, nor does it utilize the scientific method. It relies upon the preponderance of the evidence.
    That is a law 101 matter.
    You might want to rethink your hyperbole ridden "star chamber" as well. Court cases involving minor children are kept confidential, to prevent scandalizing a minor child.
    Gag orders, while a case is current and ongoing are also common, as violating such can prejudice a potential jury pool.

    "The Star Chamber was established to ensure the fair enforcement of laws against socially and politically prominent people so powerful that ordinary courts would likely hesitate to convict them of their crimes."

    Returning to the original point, the court may and should intervene when the preponderance of the evidence suggests that harm may befall a minor child, rather than await harm to occur or recur. It seems that you'd prefer a child to die or suffer drastic harm, rather than a court decide that the likelihood of harm being imminent, separation of parent and child should occur. We used to permit that, filling cemeteries with tiny graves, ignoring raped children and repeatedly broken bones and ignoring refused lifesaving medical treatments.
    We've decided that the societal burden vs the burden of the child is better served by lessening the burden of the abused child.
    That you rail against that strongly suggests that you think of a minor child as nothing more than property, mere chattel, to be used and abused at the whim of the parent. That mode of thought passed with the notion of female hysteria, fainting couches and women suffering from the vapors.

    ReplyDelete
    Replies
    1. continuation:

      On the original point, you state that the preponderance of evidence suggested that harm would come to the child if she were left in the care of the physician chosen by her parents. I strongly disagree, and the reason is this: the evidence consisted of a disagreement on the part of the BCH physician with the diagnosis of the Tufts physician, a practitioner whose credentials were at least equal to those of the BCH physician. The main difference, as far as I am able to determine, was that the BCH physician had state sanction while the Tufts physician did not. I will digress briefly to address a previous comment by Todd W. concerning my reliance on credentials. The State of MA, as do all other states, requires physicians to have certain credentials in order to practice medicine. The state license assures that the physician has graduated from an accredited medical school, has completed internship and residency requirements, and is qualified, therefore, to provide at least a minimum standard of care. Board certification in particular specialties assures patients that the physician has the required knowledge of a specific medical area of concentration, confirmed by examination, to provide a correct diagnosis and treatment within that area to the satisfaction of his/her peers. All this is done for the protection of patients. Beyond this, the only further knowledge a prospective patient has of a particular physician is from internet sites such as Healthgrades or recommendations from former patients. I don’t think the State has more. Credentials, then, are the only parameters, other than personal experience, by which a physician’s abilities can be assessed, either by the patient or by the State.

      As to your pronouncement that Lawgal would prefer that a child die rather than have the court intervene to prevent further harm, that is quite over-the-top, and appears to be more an emotional rant than a logical argument based on fact. Let me turn it around. Would you accept the serious harm to, or even the death of a child in order to uphold the authority of the State? I pose this question because denying a patient a prescribed treatment for an extended period of time simply because a State-sanctioned physician thinks the prescribing physician is wrong, without sound scientific data to back it up, risks precisely that. Now, to address your accusation that Lawgal considers a minor child to be the mere chattel of the parents, I would ask you if you consider that minor child the chattel of the State, to be used and abused at the whim of the State? That mode of thought, I had hoped, passed with the demise of several totalitarian regimes over the last century.
      Finally, somewhere back in the earlier part of this thread, the justification for the impending lawsuit was discussed. Aside from the medical details, one must remember that the child’s parents stand accused of child abuse, a serious crime. The fact that they were never formally charged and tried for this crime leaves them under this cloud since they were never afforded the opportunity to present exculpatory evidence. This suit allows them that opportunity to clear their names, and I believe this is sufficient justification.

      Delete
    2. 1. The standard is clear and convincing evidence not POE. The standards are loosened somewhat for emergency hearings bUT you have to put prove an emergency which was probably not proven.

      2. The scientific method is not only used it is necessary! The daubert and frye standards were probably not followed and had they been this debacle may have been stopped at the outset.
      3. Children are only removed from homes because they are being abused and/or neglected which are very specific legal standards.(if a likelihood of "harm" was the standard my colleagues with children playing tackle football would not have custody of their children)There is no level playing field where the state can remove your child if the child could be raised better elsewhere-children families are harmed when a child is removed from the home and the only justification is abuse which would require a compelling diagnosis of somatoform (not enough time) negating mito(not enough time) and ruling out medical causes (nit enough time).

      This situation reminds me a lot of the sexual abuse panic in the 80s and 90s- a lot of the "evidence" presented was based on faulty assumptions and improper diagnostic techniques. Children and families were harmed when state actors took action that was not scientifically warranted or vetted.

      Delete
  42. I think your characterization of Lawgal’s use of the term ‘Star Chamber’ as hyperbole-ridden is unjustified. While your description of the original purpose of the Star Chamber is correct, if you continue to the conclusion of the Wikipedia article from which it was excerpted, you find that eventually, it was so abused by the State (in this case, the King) that the term became a pejorative. In current usage, the same article states “As the U.S. Supreme Court described it, "the Star Chamber has, for centuries, symbolized disregard of basic individual rights. The Star Chamber not merely allowed, but required, defendants to have counsel. The defendant's answer to an indictment was not accepted unless it was signed by counsel. When counsel refused to sign the answer, for whatever reason, the defendant was considered to have confessed." If counsel was loyal to the State rather than the defendant, the State, of course, had its way. It is in this context, I believe, that Lawgal used it.

    In civil cases, preponderance of evidence is sufficient because the liberty of the defendant is not placed in jeopardy. The question is usually a matter of whether payment is due the plaintiff. In this case, the liberty of the child was placed in jeopardy, and was, in fact abridged for over a year. The liberty of a family to continue to function as a family was also abridged. This being the case, it would seem that a stronger standard of proof should have been required. Family court cases are usually decided by a bench trial, where the judge decides the case without referring the evidence to a jury. Concerning the gag order, you state “Gag orders, while a case is current and ongoing are also common, as violating such can prejudice a potential jury pool.” In a bench trial this is irrelevant, so the gag order, in this instance, serves only to deny the defendant the opportunity to solicit evidence in his favor and plead his case effectively. As the justification based on the possibility of prejudicing a jury is invalid here, the gag order would seem to be a violation of the first amendment to the Constitution. Perhaps Lawgal could offer a professional opinion on this point, as I am not a lawyer myself. Another point that must be made is that the judge in this case is not impartial. The State is the plaintiff, and the judge, as an agent of the State, favors the State position. He also determines what, if anything, the defendant may present as evidence in his favor. I have read of similar cases in other states where the judge allowed the defendants to present no evidence whatsoever on the grounds that it was only an administrative procedure, and did not even allow the defendants to be present at the proceedings.

    ReplyDelete
  43. Here is the amended complaint.

    http://media.myfoxbostoncom.cmgdigital.com/document_dev/2016/02/25/Amended%20Complaint_2430189_ver1.0.pdf

    The complaint refers to medical records which the attorneys of Justina have complete and unfettered access to. The complaint lays out a legal review of the medical history of Justina Pelletier including the first reports of "Medical Abuse" by Tufts (of all people) yet was later dismissed after work with Dr. Korson and his diagnosis = also the extensive work of Dr. Hokanson, her psychologist who ruled out somotaform and had been treating her for Dysthymia since 2006, and full time since 2011 (so this carp about how the parents had a problem with psychological services is just that). We have spent some space saying how Dr. Korson was left out of the team. What also should be noted is that while Dr. Korson was contacted (belatedly) Dr.Hokanson was NEVER contacted save for a questionnaire sent two weeks after the fact.

    Also interesting: While the defendants made noise about questionable diagnosis of mito, they never ruled it out either. The medical records (according to the plaintiffs) also show that when they removed the hypertension medication, she suffered tachycardia for the remainder of her stay.

    Now Todd is going to say that legal documents given in light of the plaintiffs will be naturally disposed toward their arguments. That can be easily rendered by consulting with the records which everybody has now, including the plaintiffs and the court. The Mass Tribunal certainly made short thrift of the case = hearing it on August 23rd, and rendering judgment on August 25th saying there was question of liability on behalf of all defendants. The case for now has been pretty dormant - no further items in the docket. Nothing in the media say of a few articles in HuffPost, as well as an upcoming one in Rolling Stone. Watch for either a full court press after the first of the year, or a fairly large settlement offer. Just my experienced opinion of course.

    CRA

    ReplyDelete
  44. Ah, invent crap.
    Invent more crap.
    Invent even more crap, which reality has never met, as in the previous two cases.
    Claimed science, which does not exist vs evidence based science, BS loses and we get to witness sour grapes.

    ReplyDelete
  45. A rather cryptic post! What is the "crap" to which you are referring? What is the claimed non-existent science and the evidence-based science?

    ReplyDelete
  46. FYI Dr newton failed in her summary judgment motion to dismiss-in other words there were facts alleged that she exceeded her role as a claimed"mandatory reporter"

    ReplyDelete
  47. If anyone wants to read about a child protection case that was very difficult (and tragic) but actually deserves nuance see below-people who work in this area will immediately pick up on the significant issues that distinguish this case from justinas..thicles/2016/10/03/doctors-said-they-shook-their-baby-to-death-they-

    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.

Due to spammers and my lack of time, comments will be closed until further notice.

Note: Only a member of this blog may post a comment.