Letter to the Editor – Re: Justice for Justina
I don’t know about you, but, in my personal journey through the corridors of the medical establishment, I have oft found myself encountering a divide of alternative options for a course of treatment, either for myself, or for my child or loved one. Aggressive treatment? Preventative treatment? Or a "wait and see" approach? You study the options, seek second and third opinions, you pray, you go with your gut. But the choice, with its attendant consequences, is ultimately yours.
According to investigative reporting by the Globe and other various news agencies within the last month, a teen and her family have been stripped of the dignity of personal choice between two divergent medical opinions. According to forms signed at the time of admission of their daughter to Boston Children’s Hospital, Leo and Linda Pelletier could not exercise their choice – of doctor, of hospital, of medical diagnosis or treatment, even though Children’s did not even house their daughter’s primary medical team that had already diagnosed, tested and treated her for her for mitochondrial disorder. No, the form stated that only if Children’s deemed a second opinion medically necessary could the family seek such.
Thus began what has stretched into an almost year- long nightmare for the Pelletiers, who had only taken Justina to Children’s when she developed complications with a case of flu, on the advice of the treating doctor at Tufts, Dr. Korson, Chief of the Metabolism Department, to be seen by a gastroenterologist there. Instead, the Pelletiers were told that a different medical team at Children’s had taken over their daughter’s case, and were informed, only within a few days of their daughter’s admission, that Children’s disagreed with her current diagnosis, and would begin taking her off her current medications. The Pelletiers traveled to the hospital to have Justina transferred back to Tufts. Instead, the hospital summoned security, and from four different hallways, officers converged upon them; they were separated from their daughter and forced to leave the hospital.
Children’s wasted no time in filing a 51A report with the State, on the grounds that the Pelletiers were "over-medicalizing" their daughter. The Dept. of Children and Families, rubber stamped the hospital’s opinion and took emergency custody of Justina. Children’s, who, based upon a staff psychiatrist’s observations declared Justina to have "somatoform disorder", placed her in a locked down psych ward, Bader 5, against the teen’s express wishes, where she has remained for over 10 months to date. The hospital has restricted the family’s visitation rights to just one hour per week, pending a delayed ruling of her destiny scheduled for this Friday, January 10th at The Suffolk County Family and Probate Court (the Edward W. Brooke Courthouse at 24 New Chardin St., Boston. If the court upholds the State, Justina could spend the rest of her teen years locked away in a hospital room, "all for her own good".
Apparently, according to taped interviews of a couple of lawyers who handle such cases, Children’s has challenged other parents who admitted their children with complicated diagnoses and either taken custody or threatened to do so if the family did not comply – "the dark side of Children’s", as one physician stated.
If you find this as outrageous as I do, here is what you can do: first check out the Boston Globe investigative reports from Dec. 15th and 16 ("A Medical Collision with a Child in the Middle") and especially watch FOX-CT’s Beau Berman’s excellent summative video at http://foxct.com/2013/12/19/custody-of-west-hartford-girl-stuck-in-hospital-to-be-decided-friday/. Be sure to also peruse the Facebook pages: "Free Justina Pelletier" and "A Miracle for Justina" (and by all means, take in Justina’s world via the video friends put together about her on that site). Then, join me – and over forty others – who plan to arrive at 8 a.m. to protest across from the Edward W. Brooke Courthouse, 24 New Chardon St., Boston, this Friday.
"The price of freedom is eternal vigilance." – Thomas Jefferson
Julie Miller - Sudbury