A lawsuit filed by the family of a Connecticut teen who was placed into state custody after a dispute over her diagnosis and put in psychiatric unit is scheduled to start Tuesday.
The suit was brought by the parents of Justina Pelletier against Boston Children's Hospital and those who treated their daughter, The Boston Globe reported Monday.
"Justina has suffered severe and debilitating psychiatric trauma as a result of being held against her will in a locked psychiatric ward, isolated from her friends and families, and enduring several months of treatment in which her physical symptoms and disease were denied by her primary caregivers," according to the suit, which will be heard in Suffolk Superior Court.
The family is seeking unspecified damages.
Pelletier was 14 in 2013 when she was placed in state custody in Massachusetts.
She had been diagnosed at Tufts Medical Center with mitochondrial disease, a disorder that affects cellular energy production. But Boston Children's diagnosed her problems as psychiatric.
When her parents rejected that diagnosis and tried to take her back to Tufts, allegations of medical child abuse were raised, and the Massachusetts Department of Children and Families took custody of her.
She eventually was returned to the care of her parents in 2014 after a judge's order.
The case drew national media attention and ignited a debate over parental rights.
The Pelletiers did not return calls about the lawsuit, and their lawyers declined to comment.
Children's said Justina Pelletier received "high-quality, compassionate care."
"We will vigorously defend the care our clinicians provided and unequivocally refute the allegations that are being made against them," the hospital said in a statement to the newspaper.
Justina Pelletier held her mother’s hand and watched lawyers give two different versions of her teenage years during the opening statements of her family's lawsuit against Boston Children’s Hospital.
Pelletier, now 21, and her parents allege her care team at Boston Children's committed malpractice and violated her civil rights when she was placed in state custody and put into a psychiatric unit as a child.
There are a few things that both her legal team and the defense agreed on during Tuesday's session at Suffolk Superior Court.
Pelletier has struggled with considerable health complications since birth.
“She was premature,” said John Martin, an attorney representing Pelletier and her family, describing Pelletier’s childhood. “Shortly after being born, she had a stroke. Her progression, unlike a more normal child, was more one step forward, two steps back.”
As she got older, it became more difficult for Pelletier to do regular childhood things like go to school, figure skate or even go to the bathroom. She experienced agonizing stomach pains and headaches, both sides agreed.
Also not in dispute: Throughout her childhood, at Connecticut Children’s Medical Center, Tufts Medical Center and Boston Children’s Hospital, doctors believed psychiatric care would improve Pelletier’s pain and disability. A doctor at Tufts also gave her a clinical but genetically unconfirmed diagnosis of mitochondrial disease, a genetic disorder that affects how cells generate energy.
Once the timeline moved to 2013 — and Pelletier's time at Boston Children's — the versions of events diverged.
Martin accused doctors at Boston Children’s Hospital of ignoring Tufts' mitochondrial disease diagnosis and treatment. He said Boston Children’s doctors improperly filed a child abuse claim against the parents alleging Munchausen syndrome by proxy — a form of medical neglect where caretakers fabricate a child’s illness or subject the child to excessive medical care — when the doctors caring for Pelletier did not have the expertise to make that claim.
Martin also alleged the doctors threatened to take Pelletier away from her family if they didn’t consent to a new treatment plan — one that would cut the parents out of their daughter's treatment. Later, when Pelletier was taken into state custody and placed in a locked psychiatric ward at Boston Children’s, her family only got “one hour of visitation and 20 minutes of phone calls” a week, Martin alleged.
The family's attorney said these were violations of their civil rights, and that Pelletier’s time in the psychiatric ward left her with a form of PTSD.
“This child was never afraid of doctors or hospitals, is now terrified of being taken away,” Martin said. “She has night terrors. This will stay with her for the rest of her life.”
The doctors and Boston Children’s deny any wrongdoing and deny that they ever threatened, intimidated or coerced Pelletier or her family. Instead, defense attorney Ellen Epstein Cohen painted a picture of doctors at Boston Children’s intensely investigating Pelletier’s medical history and discovering that medical professionals had recommended psychiatric care throughout her life — but that Pelletier’s father was “very resistant” to the notion.
Cohen said all of Pelletier’s doctors noticed she would act differently when her parents were present.
“When her mother was around, she would slump more. When her family was not there, she was more interactive. More communicative. This was at Tufts, Connecticut Children’s Medical Center and Boston Children’s Hospital,” Cohen said.
Throughout the battery of medical tests, Cohen said, no doctor could reliably find an identifiable, underlying physical reason for Pelletier’s state of health. Boston Children’s Hospital neurologist Dr. Jurriaan Peters started to wonder: "Was it Munchausen’s?” Cohen said.
Peters and the care team followed through on their required responsibility to report potential child abuse, Cohen said.
“They did what the law mandated of them. The child was at risk of medical neglect. And Department of Children and Families got involved,” she said. “The judge made the necessary and difficult decision that custody will stay with DCF.”
Pelletier remained in a locked psychiatric ward at Boston Children’s for 10 months. In June 2014, a judge granted custody of Pelletier back to her parents.
Pelletier’s attorneys said she is doing better now, but she still experiences pain and is being treated for mitochondrial disorder by a specialist in Connecticut.
The malpractice case brought by the family of Justina Pelletier against Boston Children’s Hospital acknowledges the divide between care teams pursuing management based on two competing diagnoses. Pelletier’s care was transferred from a team at one institution, who had concluded a diagnosis of mitochondrial disease, to a new team, who diagnosed a psychosomatic disorder.ReplyDelete
While there is continued disagreement about the cause of her symptoms, and thus the best treatment, there is one diagnosis that all parties might agree on: Fractured care coordination affects many complex patients in our fragmented health care system. When patients change providers, hospitals, or payers, they experience disruption of care. The result can be confusion, frustration, and in some cases, adverse outcomes.
Improved care coordination would undeniably benefit patients, and might also reduce costs associated with unnecessary or inappropriate care. It should be considered a keystone of health care delivery and payment reform. In a health care environment increasingly characterized by hospital closures, provider consolidation, and competitive market behavior, caregivers should aspire to smooth the necessary transitions by prioritizing continuity and coordination. Patients and providers should be building bridges together rather than going before the bench.
Dr. Audrey Marshall