Should we rethink our procedures?

Over the past year and a half, Massachusetts has been dealing with the custody of a minor from Connecticut. Normally, the name of a minor child would remain confidential but this one has been in the news with great frequency. Her name is Justina Pelletier.

 
The facts for background purposes, as reported by FOXCT on its Web site: “Justina had been…diagnosed with mitochondrial disease at Tufts Medical Center in 2011. Her parents admitted her to Boston Children’s Hospital in February 2013 with flu-like symptoms. Doctors at Boston Children’s questioned the Tufts diagnosis and said they believed her symptoms including weakness, headaches and additional pains were psychologically induced. They diagnosed her with somatoform disorder, a mental disorder. Justina’s parents disagreed with that diagnosis.”

 
So the question is, “What do we do when there are differing diagnoses from two or more experts?” One assumes that both Tufts Medical Center and Boston Children’s Hospital are reputable institutions with competent doctors. Yet, these doctors disagreed. Is one right and the other wrong? Could they both be right? Could they both be wrong? Psychologists who have worked in custody cases in divorces and the psychologists who have testified on competency or mental health issues in court are familiar with this concept.

 
Each side in these disputes hires an expert and the result is “dueling” experts. Courts are in the unenviable position of determining whose “truth” should prevail.

 
In this case, Children’s Hospital reported the matter to the Massachusetts Department of Children and Families (DCF). The parents attempted to remove their daughter from Children’s to return to Tufts Medical Center or to return home. However, once DCF was involved, the child was held by Children’s until an investigation could take place.

 
It is possible that Children’s believed that the parents’ treatment plan for the child was causing harm. Perhaps Children’s Hospital believed that under HIPAA it needed to make decisions on its own. The main question is why there did not seem to be communication among the doctors involved with this patient. It has been reported that the reason the child was taken to Children’s was because her physician had transferred from Tufts to Children’s. Yet there is nothing in the reporting that included a history of a connection with this doctor.

 
The intake at Children’s should have included “notice” of the possibility of retrieving prior medical records and discussing any matters with any prior treating physicians or with consulting physicians.  Such notice should be common practice. This notice could have encouraged communication.

 
Even if Children’s diagnosis is correct, should there not be a better mechanism in place for a conversation and possible resolution prior to involving government agencies?

 
A second issue seems even more concerning. It regards part of the court order in this case. It has been widely reported that the parents were very upset by the events. There seems to be language in the court’s opinion in the case suggesting the parents said or did something that the court believed to be unacceptable.

 
Assuming that in the court’s opinion, the parents are unable to acceptably care for their daughter  (and this is merely an assumption, because as of June 16, 2014 the parents have had two unsupervised visits) and assuming that the child needs psychiatric care and assuming that, as reported, threats and telephone disruptions from sources unknown, have occurred to agencies who have offered or provided services, it is still unclear why the child was held in a locked psychiatric ward for much of the period of this case.

 
Was the child being held for actual and identified treatment? Was the child held to punish the parents? Was the child held because the state could not find an alternative?

 
A program was finally found in Connecticut. It is a program well-known and with ties to Massachusetts. Could this have been done sooner if Massachusetts were willing to indemnify a caregiver in Massachusetts much earlier in the proceedings to care for the child in an unlocked, open setting? Those of us who are not involved in a case may not know enough to come to the correct understanding of it. At first, it seems to make sense to have matters involving juveniles confidential, but if confidentiality means that children who are not in imminent harm can be placed in a locked setting without the world taking any notice, then perhaps we need to rethink our procedures.

 
Edward M. Stern, J.D., has a private law practice in Newtonville, Mass., Stern serves as assistant dean for pre-law advising at Boston University and is a visiting lecturer for the University of Massachusetts/Boston Department of Sociology