Medical Child Abuse or Medical Malpractice? The Justina Pelletier Case

After being held in custody for 16 months, including confinement in a psychiatric ward, Justina Pelletier is seeking vindication. Her parents’ lawsuit against Boston Children’s Hospital is the latest battle in the conflict between the rights of parents to raise their children and power of medical professionals to override those rights in what they deem to be a child’s medical interests.

What were the conflicting opinions about Justina’s condition?

Justina’s story made headlines when a judge ordered her removal from her home. The Connecticut teen and her parents were caught in the middle of a dispute between medical professionals at Boston’s Tufts Medical Center and at Boston Children’s Hospital.

At the age of 14, Justina was a skilled ice-skater despite having experienced debilitating bouts of illness for several years. Doctors at Tufts had been treating Justina for mitochondrial disease, a genetic disorder that affects the ability of cells to produce energy. Mitochondrial disease can cause gastrointestinal problems, in addition to affecting the brain, the heart, and the body’s muscles.

Justina’s symptoms worsened. She had trouble walking, her speech was slurred, and she had difficulty swallowing. A doctor at Tufts referred her to a gastroenterologist at Boston Children’s Hospital who was familiar with Justina’s condition. After three days of hospitalization, however, Justina still had not been seen by the gastroenterologist. Instead, doctors at Children’s Hospital concluded that Justina’s problems were largely psychiatric.

A psychologist at Children’s Hospital who specializes in somatization disorder (an extreme emotional reaction to physical symptoms that may or may not exist) concluded that Justina suffered from that disorder. She decided that all the doctors at Tufts and other medical institutions who had treated Justina for mitochondrial disease were wrong. Physicians at Children’s Hospital who treated Justina concurred with the psychologist’s opinion.

The doctor who assumed primary care responsibility for Justina at Children’s Hospital told her parents that most of the medications Justina was taking should be discontinued. Justina’s parents refused to do so unless Justina’s physicians at Tufts agreed. They trusted the doctors at Tufts, while having reservations about the advice they were given at Children’s Hospital.

The doctor handling Justina’s care then presented the parents with a list of “Guidelines for Care of Justina Pelletier.” The guidelines prohibited the parents from discussing medical matters in front of Justina “or calling in consult teams or second opinions.”

Unhappy that the hospital did not arrange for Justina to be seen by the gastroenterologist who knew Justina and unwilling to accept the doctor’s demand that they must defer to his conclusions without consulting other doctors, Justina’s parents attempted to discharge her. They were thwarted after Children’s Hospital filed medical child abuse charges with the Massachusetts Department of Children and Families (DCF). Under state law, the mere filing of charges gave the hospital the right to override the parents’ desires.

Justina’s parents admittedly have assertive personalities that had prompted complaints from other healthcare providers. Those complaints, Justina’s history of invasive medical procedures, and the parents’ history of moving Justina from one hospital to another convinced DCF’s child protection specialists that the parents were committing medical child abuse.

The conclusions that DCF drew were largely based on information provided by Boston Children’s Hospital rather than a neutral investigation. The agency, which has no medical expertise of its own, has a reputation for deferring to the judgment of doctors at Children’s Hospital. In Justina’s case, they deferred to the conclusion that Justina’s parents were committing medical child abuse despite evidence that the parents were following medical advice given by specialists at Tufts.

What is medical child abuse?

Medical child abuse is a catch-all term that includes conditions such as Munchausen by Proxy, a psychiatric condition that compels parents to seek attention from physicians by fabricating or inducing a child’s illness. Medical child abuse refers to a broad spectrum of cases in which parents, regardless of their motivation, fail to act in the best medical interests of their child.

There is no dispute that medical child abuse occurs. Serious questions arise, however, when parents are blamed for failing to give appropriate medical care to a child whose condition is disputed by medical professionals.

Over a period of 18 months, Children’s Hospital one of the nation’s leading pediatric facilities was involved in five separate cases in which a disputed diagnosis caused parents to lose or be threatened with the loss of a child’s custody. One of those cases involved a 5-year-old who, like Justina, had been diagnosed with a mitochondrial disorder.

In most of the cases, the child had been diagnosed with a complex, poorly understood disorder, and the medical records indicated that the parents were greatly stressed and not fully cooperative. The parents in those cases became even less cooperative after doctors at Children’s Hospital told them that their children’s problems were more psychological than physical.

Justina’s case illustrates a growing fear that doctors can level vague and unsupported allegations of medical child abuse at any parent who disagrees with their psychological or medical treatment recommendations. It also raises the question about parental rights and whether ultimate decisions about a child’s treatment should be made by the child’s parents or by the state when medical professionals disagree.

What happened with Justina’s lawsuit?

The day after Children’s Hospital took Justina into emergency custody, a juvenile judge affirmed that decision. The judge repeatedly extended that custody, in part because he viewed Justina’s parents as uncooperative. Social workers decided Justina would only be allowed to see her parents once a week.

Justina was moved into a locked psychiatric ward. Her attempts to resist her confinement were futile. The physician in charge of her care at Tufts was not allowed to be part of her medical team, despite his concern that the hospital’s treatment of Justina was more psychologically damaging than anything else that occurred in Justina’s life. A year of inpatient psychiatric care did little to improve her condition, a fact that raised questions about the accuracy of Children’s Hospital’s diagnosis and the wisdom of its treatment plan.

After a series of newspaper articles called attention to Justina’s confinement, the juvenile court suddenly decided that Justina’s parents had become more cooperative and that it was safe for Justina to return home. Her health improved markedly in the months following her return.

Justina and her parents have sued Children’s Hospital and four of its doctors for civil rights violations and had a medical malpractice lawsuit against them. Regardless of the suit’s ultimate resolution, Justina’s case raises public awareness of the dilemma that parents face when medical institutions make conflicting treatment recommendations and when child protection agencies fail to conduct independent investigations of medical child abuse allegations.