Justina Pelletier, a teenager caught in the middle of a high-profile medical dispute and child custody battle, is expected to be discharged from Boston Children’s Hospital to a residential facility in the next few weeks, after a juvenile court judge moved on Friday to end a stalemate that has kept the girl at the hospital for almost a year.
Eleven months to the day after Justina’s mother brought her to Children’s, Judge Joseph Johnston put in motion a plan that fulfills the parents’ long-sought wish to have her leave the locked psychiatric ward of the Harvard teaching hospital. But instead of allowing the 15-year-old to return to her home in West Hartford, Conn., the judge ruled that the Massachusetts child protection agency would maintain custody of her for now, according to three sources briefed on the plan.
It’s unclear how long Justina will remain at the transitional facility, or where she will go after that. But she is expected to stay long enough for a thorough evaluation of how well she adapts to a nonhospital setting, as well as how well her parents cooperate with their daughter’s team of caregivers.
The judge also signaled that once Justina has left Children’s, doctors at Tufts Medical Center would resume primary responsiblity for her care, effectively ending Children’s Hospital’s involvement in the long saga.
The court appears to support a plan that calls for Dr. Mark Korson, chief of metabolism at Tufts and the physician who oversaw Justina’s care before she went to Children’s, to play a key role in the development of an overall plan for her care. The girl’s parents have long insisted that Korson should play a greater role in the case, which has drawn national attention.
Justina’s case, the focus of a two-part series in the Globe last month, sprang from a diagnostic dispute between her doctors at Tufts Medical Center and at Children’s over whether her deteriorating condition was primarily a physical or a psychiatric problem. Korson had been treating her for more than a year for mitochondrial disease, a group of genetic disorders that affect how cells produce energy, often causing problems with the gut, brain, muscles, and heart.
But within a few days of her arrival at Children’s, clinicians concluded that her physical symptoms were primarily psychological in origin.
When the parents refused to accept this shift and tried to discharge her and take her back to Tufts, the focus of the case swiftly turned to a controversial concept called “medical child abuse.” This allegation is applied to parents suspected of interfering with their child’s medical care or pushing for unnecessary and even harmful treatments.
But in a contentious case that has been marked by tears and high emotion, the scene in the courthouse Friday was notable for its calm, almost business-like manner. There was little chatter in the corridors, with the parties citing the gag order the judge had imposed late last year and that remains in place.
Plans have not been finalized for where Justina will be moved as an interim placement, but a facility in Eastern Massachusetts that has services for children with physical and emotional issues has been identified as a leading contender.
This transitional period will provide time for the Massachusetts Department of Children and Families, which holds custody of the teenager, to discuss possible transfer of her case to their counterparts in Connecticut. It will also be a test for Justina’s parents, who have a long history of clashing with providers over their daughter’s care. In addition to the development of a care plan, the court has requested the establishment of a code of conduct that Justina’s parents, among others, will have to abide by.
This practice has been found to be an effective tool used by top pediatric facilities to repair relationships when there has been a rift between providers and parents.
In court Friday, according to two of the sources, lawyers for the Department of Children and Families requested that the judge extend the state’s custody of Justina in such a way that her parents could not challenge it for at least six months. But the judge reportedly denied that request, choosing instead to maintain temporary custody with the state.
The judge indicated a strong willingness to give the parents the opportunity to demonstrate their fitness to regain custody of their daughter and eventually bring her home, these sources said. However, if the parents are not able to gain the confidence of the judge and her providers during this trial period, Justina would likely remain in state custody and could be moved to a foster care facility.
The judge scheduled another hearing for Feb. 4, where the plan for Justina’s further care is expected to be presented by William Cusick, the lawyer the judge appointed in December to serve as his court investigator. Cusick has played a pivotal role in the latest developments, extensively interviewing all the major parties.
The February hearing will be just a few days shy of the one-year anniversary of Justina’s arrival at Children’s. The hospital released a statement Friday saying that while it can’t comment on a specific patient’s care, “the hospital does not keep patients in its care against the direction of the custodial guardian.” In Justina’s case, the state has been the guardian since last February.
The parents emerged from the courthouse Friday, greeted by about a dozen supporters, some holding signs saying “Free Justina!” Unlike after the hearing in late December, when Linda Pelletier wept and her husband, Lou, cursed outside the courtroom in response to the judge’s decision to keep their daughter in state custody, this time the couple appeared far calmer and almost upbeat.
Lou Pelletier called the results of the hearing “basically positive,” but added, “the proof will be in the pudding.”Patricia Wen can be reached at firstname.lastname@example.org. Neil Swidey can be reached email@example.com.