The Case That Patients' Rights Advocates Call an 'Atrocity

There's a larger issue in the case of the Connecticut teenager held by a Massachusetts hospital and treated for a disputed diagnosis against her parents' will for the last year, patients' rights advocates say.

Diane O'Leary, executive director of the Coalition for Diagnostic Rights, told TheBlaze that even if it were determined that Justina Pelletier doesn't have mitochondrial disease, and does have somatoform disorder — a disorder that says her symptoms are all in her head — and that her parents were truly over-medicalizing her as they have been accused, her rights and her parents' rights were still violated.

"Even if that's the case, this is an atrocity," O'Leary said. "Because during those initial days when her parents said 'this is our doctor, this is who we came to see,' there is no justification for denying them the right to see that doctor or to take their child for a second opinion."

O'Leary said the Pelletier case, which has been playing out in Boston juvenile court for the last year, should open a national conversation about patients' rights, and — in the case of minor patients — the rights of their parents.

Justina Pelletier with her parents, Linda and Lou. Justina has been in the custody of the state of Massachusetts since last year. (Image source: Facebook)

"This is not the government creeping in to take your rights," O'Leary said. "Doctors have been creeping in to take your rights for generations. This happens every day to millions of people in the U.S. alone. This case is an opportunity to bring these patients out."

What O'Leary is talking about are cases in which patients are told by physicians the symptoms they are experiencing are "all in their head." Not that they are not truly experiencing physical symptoms, but that the cause is psychological. Such disorders include somatoform disorder, conversion disorder, body dysmorphic disorder and more.

That's what doctors at Boston Children's Hospital told Justina's parents, Lou and Linda Pelletier, that their daughter had when they brought her to see a gastrointestinal doctor in February 2013. Under the care of doctors at Tufts Medical Center, the parents had been treating Justina for mitochondrial disease, a disease with symptoms that result due to a defect in cells' mitochondria, the energy-producing organelle. But the parents were advised by a Connecticut hospital to bring the teen to Boston Children's Hospital when she needed extra care after getting the flu.

At Boston Children's, Justina was seen not by the doctor advised by her medical team but a neurologist who said she had somatoform disorder, not mitochondrial disease, Lou Pelletier told TheBlaze earlier this week, breaking a court-imposed gag order, which has since seen a filing asking that he be held in contempt of court.

When Justina's parents learned a couple of days later that Boston Children's doctors wanted to take her off prescribed mitochondrial treatments and start a different regimen, they disagreed. When they tried to take her from Boston Children's to Tufts instead, they were met with a form from the state Department of Children & Families accusing them of over-medicalizing their child, alleging medical abuse and that removed her from their custody. Justina has been in DCF custody for more than a year, not receiving medical treatment for the diagnosed mitochondrial disease, while Lou and Linda Pelletier battle in the court.

Diane O'Leary argues that regardless of Justina Pelletier's diagnosis, her rights and those of her parents have been violated. (Image source: Coalition for Diagnostic Rights)

Bridget Mildon started FDN Hope, a group for patients who were diagnosed with functional neurological disorders, after she experienced heart attack-like symptoms for years. When doctors couldn't figure out what was causing it, they said it was in her head -- that it was psychological.

She was eventually diagnosed with Sneddon's syndrome, a disease affecting the arteries. After she started receiving treatment for this syndrome, Mildon said she went from the "point where I was dying" to one where she is functioning.

O'Leary has Sneddon's syndrome, too. It took 12 years to diagnose, and her sister died from complications from the same disease after initially being told by doctors that she had somatoform disorder.

"What we do is try to address the reckless 'it's all in your head' diagnoses," O'Leary said of the patient advocacy coalition. "Whatever label is being used, we're trying to expose the fact that those diagnoses are made recklessly in a huge number of cases. People are suffering and dying ... in this process where doctors override patients' rights."

What's more, Mildon said, once a diagnosis like this is placed on a patient's file, it's difficult for them to have other opinions considered by other doctors.

"It is often the last diagnosis a patient will ever get because every symptom is then viewed as functional or somatic," Mildon said.

O'Leary explained the thought process that might be going on here: when a doctor tells a patient what they're experiencing is a result of a psychological disorder, doctors might then deduce that a patient -- if they don't believe the root cause is psychological -- can therefore no longer make decisions about their symptoms. If the patient can’t make decisions about these symptoms, then the doctor might think he or she should make decisions for the patient.

[sharequote align="center"]". . . they are guilty of absurd faith in their own indefensible hunches."[/sharequote]

This not only results in doctors overriding a patient's right to choose, in some cases, but also "results in doctors overriding other doctors," O'Leary said.

O'Leary said she truly believes that doctors at Boston Children's Hospital thought what they were doing for Justina was right, at least at first.

"BCH doctors aren’t trying to cause Justina pain," she said. "They’re doctors, they're not trying to harm poeple. Clearly they believe -- or they did believe -- that it was in her best interest to take away all medications and try to train her to control symptoms. But they are guilty of absurd faith in their own indefensible hunches. They're guilty of not noticing that these diagnoses don’t have medical support. They're guilty of violating of her rights. Even if Justina isn’t sick ... even if she has somatoform, still they violated her fundamental patient's rights."

O'Leary said that if doctors had adhered to what she says are a patient's rights in the first place, it "would have forced them to collaborate with the other doctors, to collaborate with the guy at Tufts. They would have to respect her parents' decision. And it would force the doctor who says it’s all in her head to make a case for it ... if [this case was] not convincing, then [the Tufts doctor's] opinion would have prevailed."

But what exactly are patient's rights? Though there are ethical codes and regulations that medical professionals adhere to and many states and institutions have instituted "Patient's Bill of Rights," there isn't necessarily a national one. President Barack Obama introduced a Patient's Bill of Rights in 2010, which applies to a patient's right to health coverage.

The Coalition for Diagnostic Rights presents 24 rights it wants patients, especially those facing a somatoform diagnosis, to know. The coalition sent a letter to the judge presiding in the Pelletiers' case with 10 rights they say were violated.

In response to the coalition's letter, Boston Children's Hospital emailed WTIC-TV a statement: “The allegations in the letter of the Coalition for Diagnostic Rights pertaining to Boston Children’s Hospital are incorrect and appear to be based on inaccurate and misleading information.  The hospital has no further comment."

O'Leary told TheBlaze she thinks if Justina is found to have mitochondrial disease and wasn't treated for it for more than a year by the hospital, a case could be made that her Eighth Amendment rights -- those protecting her against cruel and unusual punishment -- were violated.

"We're trying to press here that when she’s found to be sick, which seems inevitable at this point, that’s when we need to make a big fuss about the Constitution," O'Leary said. 

"Even when parents' rights get set aside because of suspected child abuse," something O'Leary said is being "recklessly" used these days in court, "that is not a sound reason for violating the patient’s rights."

To O'Leary, it's changing the protocols of how doctors treat patients that they think have psychosomatic disorders that's the larger issue at play here.

"There is no patient who is conscious who is not threatened by this problem. There is nothing that is free from doctor's instant stereotype hunches."