Martin Gottesfeld was featured by Rolling Stone for defending 15-year-old Justina Pelletier when she was maimed at Boston Children’s Hospital. He contributed to this article during his 100-day hunger strike. See FreeMartyG.com, the FreeMartyG Facebook page and @FreeMartyG Twitter account for more info.
In 2016, the family of mitochondrial disease patient Justina Pelletier sued Boston’s Children’s Hospital (BCH) and four of the doctors who treated her there, claiming medical malpractice, gross negligence, and civil rights violations. The lawsuit, available online, is not easy reading and during her family’s struggle to get her home, the word “torture” came up often. It is not a light topic, as Manfred Nowak, former U.N. Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, wrote during his tenure:
The term “torture” should not be used in an inflationary manner. It is reserved for one of the worst possible human rights violations and abuses human beings can inflict upon each other, and therefore carries a “special stigma.” At the same time this means that once it is established that torture has been inflicted, one is dealing with a very serious crime and an ill-treatment of human beings who will most likely suffer from its consequences for the rest of their lives, if not physically then mentally.
So, did Boston Children’s treatment of Justina Pelletier amount to torture? Here’s what’s known, and what’s alleged, as well as the hospital’s statement in response to the lawsuit.
In February 2013, then 14-year-old Justina had the flu. It was taking a heavy toll on her, as infections often do on those with mitochondrial disease. She was having trouble eating and walking.
Mitochondria are a part of nearly every animal cell. They are responsible for the production of energy at the microscopic level. They carry their own DNA, separate from the rest of the human genome, and mitochondrial DNA is only communicated from mother to child. Fathers do not pass on their mitochondrial DNA. Mitochondrial disease is often genetic, although environmental causes are possible too.
The term “mitochondrial disease” actually refers to a set of even more specific conditions, but each prevents the proper function of the cells’ energy systems. Sometimes genetic tests can indicate a particular problematic mutation, but other times, neither a DNA test nor a biopsy are conclusive, and a clinical diagnosis is made. Mitochondrial disease is estimated to affect approximately one out of every two thousand people. It is often degenerative, progressive, and fatal, especially when left untreated. Due to its fundamental nature, it can cause a wide variety of serious symptoms across the nervous system, gastrointestinal tract, internal as well as sensory organs, and more.
Justina had been diagnosed in 2011 by Dr. Mark Korson, widely considered a leading expert in the mitochondrial disease community and then-Chief of Metabolism at Tufts University Medical Center in greater Boston. Dr. Korson had also diagnosed one of her older sisters with the often genetic ailment following a biopsy. However, Justina and her family lived hours away in West Hartford, Connecticut.
When she first got the flu, her family took her to a nearby hospital, and called Dr. Korson. As she was having trouble eating, Dr. Korson wanted Justina to see her gastroenterologist, who had recently moved his practice from Tufts to nearby Boston Children’s Hospital. Arrangements were made to bring Justina by ambulance from Connecticut to Boston, and just following a heavy snowstorm, she and her mother made the harrowing ride, with the ambulance swerving along the way, and arrived in the middle of the night.
Instead of seeing her gastroenterologist though, Justina was seen by Dr. Jurriaan Peters, a neurology resident seven months out of medical training. This new and comparatively inexperienced doctor doubted Korson’s mitochondrial disease diagnosis, calling for a mental health consult. Psychologist Simona Bujoreanu, PhD evaluated Justina and felt that she was suffering from somatoform disorder. Shortly thereafter, the situation got tense.
Somatoform is a psychological condition where patients incorrectly perceive themselves as physically ill, which causes them to experience physical symptoms, sort of like the placebo effect in reverse. Looking to prove their new hypothesis and believing many of the medications she had been prescribed for mitochondrial disease to be unnecessary, the BCH team, at first, sought consent from Justina’s parents to stop those therapies. The new treatment plan also prohibited the Pelletiers from seeking second opinions. Fearful, her parents refused.
When they attempted to discharge Justina and bring her to Dr. Korson, having never seen her gastroenterologist, the Pelletiers were met by security staff and told that the hospital Child Protection Program (CPP) team had filed a report about them with the state child welfare agency, the Massachusetts Department of Children and Families (DCF.) DCF immediately took custody of Justina and she remained at the hospital pending a court hearing the next day where her family could answer the suspicions of “medical child abuse” filed by BCH.
Medical child abuse refers to a situation where parents subject a youngster to unnecessary, invasive, medical procedures, causing them harm. It is similar to Munchausen syndrome by proxy, but the motives of the caregiver need not be evaluated. Doctors at the Boston Children’s Hospital Child Protection Program team refer to the use of such a report in order to remove parental custody as a “parentectomy.” Patient advocacy groups specializing in mitochondrial disease and some other rare ailments state that incorrect medical child abuse allegations regularly separate children from their parents and lead to the stopping of necessary treatments.
In the months that would follow, the connection(s) between BCH and DCF would become a subject of public controversy. The Boston Globe noted that DCF’s regular reliance on BCH for free consults, “can create at least the appearance of a conflict of interest when the agency is weighing abuse allegations brought by the hospital.”
Local attorney, former federal prosecutor, and longest tenured board member of the Massachusetts Society for the Prevention of Cruelty to Children, Barry Pollack, referred to the relationship as “odd” and reported that FOIA requests indicated that a lawyer at BCH, “offered to have the legal department for [Boston] Children’s Hospital perform legal work for DCF in one matter.” Mr. Pollack also wrote that the hospital’s Bader 5 psychiatric ward, “appears virtually synonymous with abuse for many children.”
According to the Globe, at Justina’s first custody hearing, DCF presented an affidavit that “showed considerable deference to [Boston] Children’s [Hospital].” It said BCH doctors, “do not know where the parents picked up the [mitochondrial disease] diagnosis.”
Apparently, though both Dr. Peters and Dr. Newton, then the head of the Child Protection Program team, knew of Dr. Korson’s involvement and Korson had counseled Newton to be cautious about making allegations, the statement above still made its way on to a sworn court document. Additionally, though the DCF social worker interviewed Korson, and he explained the diagnosis, that it often runs in families, and that he had also been treating Justina’s older sister, those facts were omitted from the affidavit as well.
According to the Globe:
When the judge decided to maintain temporary custody of Justina with the state, the Pelletiers were furious. They took their complaints to every authority they could think of: the district attorney, the attorney general, the governor’s office, even the FBI. They alleged that [Boston] Children’s [Hospital] was using its considerable muscle to box them out at every turn. When the parents received an e-mail from the person the judge had appointed as an independent investigator to advise him in the case, they were outraged to see her list an affiliation with [Boston] Children’s [Hospital] in the e-mail.
None of agencies or officials the Pelletiers contacted took any meaningful action, and in April of that year, Justina was moved against her will into the hospital’s locked psychiatric ward, known as “Bader 5.” She would remain there for the next nine months while her family desperately tried to win back custody, and even after she left Boston Children’s Hospital, BCH doctors remained involved in the case. In total, she was in state custody away from her home, for sixteen months and two birthdays, including her sweet sixteen.
One of the most important allegations is that Boston Children’s Hospital withheld important medications from Justina. As media attention was rising, an alleged copy of Dr. Peters’ new treatment plan leaked online. The details published in the leak match those quoted in the lawsuit, and indicate that Tegretol, Midodrin, and Metoprolol would immediately begin to be phased out. Other medications “with limited side effects,” specifically Lyrica and a vitamin cocktail were described as “maybe okay for now.”
Lou Pelletier, alleging the stopped medications during an interview with Greater Boston.
Tegretol is a brain medication. Justina suffered a stroke when she was very young and unfortunately such complications are not uncommon for mitochondrial disease patients. It is also not uncommon for “mito” patients to have cognitive disabilities, and indeed prior to her admittance at BCH, Justina had attended a school for children with learning challenges.
Metoprolol is a cardiac medication. The lawsuit alleges that, “Justina’s hypertension medication was discontinued. Her treatment records reveal that she suffered from tachycardia thereafter.”
On the non-prescription side, mito patients often take vitamin cocktails to assist with mitochondrial function. No two patients are the same, and different vitamins assist with different symptomatic bodily systems. So, a particular patient’s cocktail will be tailored in cooperation with their doctors. For many, they are necessary to ease suffering, and maintain a decent standard of life. The lawsuit specifically alleges that Justina’s vitamin B12 supplementation was stopped, and that subsequently she was treated for B12 deficiency.
Lyrica is a nerve pain medication. Dr. Richard Boles, a practicing physician and the Medical Director of Cortigen Life Sciences, told ABC News in an interview, “People with mitochondrial disease have a lot of pain...normal sensations are amplified by the nervous system. They are not making it up. The idea of somatoform is you are making it up to serve some need. But they are having real pain.” More than a year after Justina was admitted to Boston Children’s, her father, Lou Pelletier, told the local PBS station that his daughter had been taking Lyrica prior to her time at BCH, but since had, “been in severe pain, non-stop, twenty-four hours a day for thirteen months.”
Other allegations stem from BCH’s attempt at behavior modification. As clinicians believed the root causes of her physical disabilities to be psychological, they tried to demonstrate to Justina that she could overcome them without help or medication. The lawsuit alleges that Justina would be, “left alone in her wheelchair for hours at a time when she would not or could not wheel herself to common areas.”
In an interview conducted with a local TV station the day she returned home, Justina said, “They would leave me in the hallway, one time for a whole weekend. I was just sitting in the hallway, staring at it because they wouldn’t help me...They wouldn’t let me talk to other kids there. I was basically just staring at the wall all day...”
Additionally, her family claims that Justina would be left on the toilet for hours at a time when she was unable to void her bladder or bowels while her assertions that she was physically incapable were ignored. The suit also alleges that when they did move her, hospital staff ripped Justina’s toenails by dragging her feet on the floor.
According to Justina in the same interview above:
[They were] just pushing me and push[ing] me. It wasn't just the walking. They made me use my whole body, and I couldn't do all that.
They would put me in a room where they would do all this other mean stuff. They’d say "You have to do it," or -- and then they'd start laughing and then they would leave me and then they'll make me be there for sometimes up to two hours or more.
As part of a related topic, touched upon by the media at the time, due to their bodily difficulty producing chemical energy, mitochondrial disease patients require naps throughout the day. Dr. Korson had placed Justina on a special school schedule, as she would lose energy in the afternoon. When she was finally released home, one of her requests was to be allowed to sleep in for the summer. However, at BCH’s Bader 5 psychiatric ward, no special accommodations were made for wake up and lights out.
The leaked treatment plan also dictated that no medical discussions were “to be held in the room or within the patient’s hearing.” Justina’s family visits and phone calls were monitored, preventing her from discussing her treatment or condition. Outside the hospital, when media started showing up at the courthouse, a gag order was issued seeking to prevent the Pelletiers from speaking to journalists. Her father would break the gag order, which would later be lifted instead of enforced. Among other things, her family told the media, and alleges in the lawsuit, that Justina began smuggling them hidden notes in origami and art projects describing her deteriorating condition, poor treatment, and terrifying fears.
Other allegations stem from BCH’s attempt at behavior modification. As clinicians believed the root causes of her physical disabilities to be psychological, “People with mitochondrial disease have a lot of pain...normal sensations are amplified by the nervous system. They are not making it up. The idea of Somatoform disorder is you are making it up to serve some need. But they are having real pain.” More than a year after Justina was admitted to Boston Children’s, her father, Lou Pelletier, told the local PBS station that his daughter had been taking Lyrica prior to her time at BCH, but since had, “been in severe pain, non-stop, twenty-four hours a day for thirteen months.”
As their relationships with BCH and DCF went from bad to worse, the Pelletiers’ visitation and phone time were reduced due to accusations regarding their behavior. The lawsuit alleges that they were denied visits on holidays (including Christmas Eve, Christmas, Mother’s Day, and Father’s Day) and special family days like birthdays. It also claims that birthday gifts ordered for Justina were placed in a closet and delivered weeks late, leading her to believe that she had been forgotten.
Further allegations arise because Boston Children’s Bader 5 psych ward specializes in treating patients who are a danger to themselves or others. The lawsuit alleges that the hospital declared Justina met these criteria due to her difficulty attending to certain tasks of daily life. If true, her commitment for such reasons to a locked facility where children can be blocked from natural sunlight and denied time outdoors, as the lawsuit alleges, could run afoul of both U.S. statutes and international humanitarian law. UN Convention prohibits the existence of a disability from being used as a justification for depriving anyone of their liberty. The UN Special Rapporteur On Torture has also explicitly stated that involuntary and intrusive psychiatric interventions performed on people with disabilities can qualify as torture when there is involvement of state officials, such as DCF, and when the suffering that results is severe.
The above is a highly summarized list of the allegations. Additionally, there is a wealth of media reports and interviews available online. You can decide for yourself what is true, and what to consider torture. We welcome your comments below.
We asked former Boston Children’s Hospital psychiatric RN Katie Higgins, who filed a mandated reporter complaint against the hospital’s psych ward during Justina’s stay, why she used the word “torture” to describe Justina’s treatment. She told us: desperately
I used the term ‘torture’ because Justina could not physically comply with the commands of BCH psychiatry clinicians, which rendered her helpless to change her circumstances. She was ‘told’ she could do what she could not, because of her medically compromised condition. This agonozing duress was inflicted on a young teen in the context of complete seperation from the support and sense of security she so desperately needed. Justina suffered a severe traumatic separation from her mother, her whole family, and her friends. In that terrified state she was told that she did not need the medical care she came to BCH to receive. Neglect, coercion, and force, were applied to achieve the goals of BCH psychiatric clinicians wanting to prove that Justina’s physical limitations and deficits were symptoms of a psychological problem—caused by her parents.
I cannot at this time share details, but as recently as August 6th when I last visited Justina, 2 years had passed since her release from BCH and DCF, and she is still suffering physically, mentally, and emotionally from the torture she endured; the worst of which was the nine months she was locked up on Bader 5 at BCH.
After Justina’s family announced their lawsuit, Boston Children’s Hospital released the following statement:
We are committed to the best interests of our patients’ health and well-being, according to the high standards we follow for every patient placed in our care. Out of respect for the patient’s privacy and the ongoing legal process, Boston Children’s is unable to provide further comment about the specific issues of this case at this time.
Regarding general questions about religious and education services, Boston Children’s offers patients and families access to a broad complement of services that are outlined at http://www.childrenshospital.org/patient-resources/family-resources. Specifically, patients and their families have access to Boston Children’s multi-faith chaplaincy, which offers spiritual support 24 hours a day to people of all traditions and those with no religious affiliation to assist and support our patients and their families. Boston Children’s also offers educational tutoring for all eligible patients, with a full time teacher on staff to provide ongoing education as appropriate for each individual patient.
Boston Children’s and its providers are required by state law to report cases of suspected child maltreatment to the Department of Children and Families (DCF). DCF is solely responsible for investigating reports of suspected child maltreatment and for deciding whether to go to court to request temporary custody of a child. The Hospital never decides who has custody of a child in any case of alleged child maltreatment. The Hospital is not the custodian or the legal guardian of the patients in its care, nor is it affiliated with any state agency. Boston Children’s does not keep patients in its care against the direction of the custodial guardian.’’