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.
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.
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
- ABC News - Advocates Fight for Justina Pelletier, Teen Held by State in Psych Ward
- Boston.com - Justina Pelletier, child in year-long custody case won't be moved out of Framingham facility
- Boston Globe - The Justina Pelletier Case: A medical collision with a child in the middle (part 1)
- Boston Globe - The Justina Pelletier Case: Frustration on all fronts in struggle over child’s future (part 2)
- Boston Globe - Justina Pelletier heads home after judge ends state custody
- Boston Globe - Mass. agency works to return teen to Connecticut
- FoxCT - Mass. Representatives Ask DCF To Release Justina Pelletier
- Harpocrates Speaks - The Case of Justina Pelletier Calls for Nuance and Moderation
- Harpocrates Speaks - Case of Justina Pelletier Spawns Dubious Legislation
- Harpocrates Speaks - Justina Pelletier to Remain in Massachusetts DCF Custody
- Hartford Courant - DCF Defends Actions in Pelletier Custody Case
- Hartford Courant - FOXCT Exclusive Interview With Justina Pelletier
- Justice for Justina (petition)
- Justina Pelletier Prayer Vigil and Witness (March 1st vigil held outside Wayside Youth and Family Support)
- MetroWest Daily News - State authority questioned at vigil for Conn. teen
- Patrick F. Chinnery - GeneReviews: Mitochondrial Disorders Overview
- Suffolk County Juvenile Court - Care and Protection of Justina Pelletier
- Women of Grace - Outrage Grows Over Justina Pelletier Case
- A Miracle for Justina (Facebook) - April 4, 2015 Post
- A Miracle for Justina (Facebook) - September 29, 2015 Post
- ABC News - Justina Pelletier Spends Father's Day at Home Amid Custody Battle
- Boston Globe - After 16-month battle, Justina Pelletier returned home
- Boston Globe - A difficult return to hospital for Justina Pelletier
- Boston Globe - Parents of Justina Pelletier sue Boston Children's Hospital for negligence
- Fox61 - Justina Pelletier facing more medical problems
- Fox News - Family of Justina Pelletier announces lawsuit against Boston Children's Hospital
- Fox News - Justina Pelletier's family to sue Boston hospital after long custody fight