Justina’s hospitalization is the most extreme of a handful of unusually contentious cases over the last 18 months involving Children’s Hospital and the Department of Children and Families. A Globe review of these and other cases nationally has found that most involve a disputed medical diagnosis, charges of parental misconduct filed or threatened by the hospital, and the inability of the state child-welfare agency to provide effective intervention.
At issue in these cases is also the use of a controversial term, medical child abuse, that can be leveled against any parent who is perceived to be acting against the best interests of his or her child in a medical setting. Child protection specialists stress how much children can suffer at the hands of parents intent on “over-medicalizing” or interfering with their care. But parents, including the Pelletiers, contend they were hit with these charges simply because they disagreed with the hospital’s diagnosis and wanted to take their child elsewhere for treatment.
The problem is that there are few good paths to resolution once doctors are convinced that parents are harming their child. The tools available are exceedingly blunt and emotionally inflammatory: The system basically requires doctors to suggest the parents are unfit and may deserve to temporarily lose custody of the child, as well as any voice in the child’s treatment.
The Department of Children and Families is supposed to referee such disputes, but the agency is ill-equipped to intercede at the highest levels of medicine. Across the entire state, the DCF staffers with formal medical training consist of just one half-time pediatrician, one half-time psychiatrist, and a handful of nurses. Five years after the Legislature approved funding for a physician medical director, the agency has yet to fill the slot.
Instead, the agency regularly turns to doctors in the medical mecca of Boston for free consults. Its deputy commissioner acknowledges that, given Children’s standing as one of the world’s top pediatric hospitals, the state often looks there first for assistance — which can create at least the appearance of a conflict of interest when the agency is weighing abuse allegations brought by the hospital.
“The medical capacity of DCF is nil,” said Dr. Stephen Boos, the medical director for the team that handles child protection cases at Baystate Medical Center in Springfield. Yet he stressed that cases of mitochondrial disease — the diagnosis at the center of the standoff over Justina — are some of the thorniest in medicine. No doctor wants to miss diagnosing this relatively new but still murky cellular energy-production disorder because it can be fatal. But mistakenly diagnosing it can send a child down the road of needless and potentially harmful procedures and medication. As a result, Boos said, there are “lots of value judgments,” and in Boston, “with these super-subspecialists, these egos are going to be high.”