Maybe physicians are the scurvy bottom feeders Barack Obama proclaimed them to be back before Congress agreed to cram his health care law down the throats of unsuspecting American voters. Certainly, one might look askance at doctors at Boston Children’s Hospital, who have been accused of “kidnapping” a 15-year-old and keeping her there against her parents’ wishes.
The story, which is as tragic as it is surreal, is also rife with improbable accusations by the distraught family, including claims that doctors have been using the girl as a guinea pig for experimentation. The family’s grief reaction — there is no other term for it — should not be mistaken for melodramatics.
The unvarnished facts are that Justina Pelletier of West Hartford, Conn., was admitted to the hospital nine months ago suffering a bout of the flu. At the time of her admission, she had been under treatment for three years for mitochondrial disease, a rare genetic muscle wasting condition.
Once an inpatient, Justina was diagnosed as suffering from somatoform disorder, a psychiatric condition. Doctors insisted that the earlier diagnosis had been incorrect and that Justina’s parents had been “over-medicalizing” her.
When the girl’s mother, Linda, tried to take her to another hospital for a pre-arranged appointment with a regular specialist, child welfare workers were called in. Within 24 hours, a judge had ruled that Justina was required to remain at Boston Children’s. The Massachusetts Department of Children and Families, moreover, was effectively given custody of the child.
Under the terms of the court order, the family gets weekly visitations with Justina, each one hour in duration. A member of social services must be present. Justina is permitted to phone home but the calls are monitored.
In the meantime, her physical health has declined dramatically. She can no longer walk unaided, and her family claims that staff has told her she “is never getting out.”
A report written in April acknowledges that doctors at the hospital took Justina off many of the medications she was taking at the time she was admitted. The absence of drugs used to treat mitochondrial disease would seem to dovetail with her symptoms.
