by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)
Last month I wrote an article about Justina Pelletier. Justina is a 15 year old girl diagnosed with Mitochondrial Disease at Tuft’s hospital, if you are unfamiliar with her story to this point please read last month’s article, Hospital vs. Parent.
Over the past week this story has exploded. Lou Pelletier, Justina’s father, broke the gag order placed by the court and has been speaking to the media. Last week marked the one year point in the Pelletier Family’s battle with the Massachusetts Department of Children and Families, DCF, and Boston Children’s Hospital, BCH.
In my opinion, Mr. Pelletier is amazingly calm and collected for a father in his position. In each interview he tells his side of the story, a few of the points he makes are below:
- He is breaking his silence (and defying the gag order) because he believes that Justina’s life is in danger because of the treatment she has received at Boston Children’s Hospital
- In January of 2013 Justina was ice skating and living the life of a normal teen, now she is confined to a wheelchair and states that she is in constant pain.
- The specialist the family went to BCH to see was physically removed from her room when he attempted to see the patient.
- All medical procedures performed on Justina by Tufts Hospital were deemed necessary by physicians and were covered by insurance. He also gives examples of the procedures and presents proof of why they were medically relevant.
- The Pelletier Family feels that the treatment Justina received at BCH is mentally and physically abusive to their daughter. Examples are:
- Psychologists asking her why she allowed doctors to perform past medical procedures on her when they were unnecessary.
- Justina has difficulty with bowel movements, some of her previous medical treatments were to resolve this problem. According to Mr. Pelletier, Justina has been forced to sit on the toilet for hours at a time and has been told that her toileting issues are in her head and that she will sit on the toilet until she has a bowel movement.
- Justina has been moved to another facility in Massachusetts that specializes in psychological issues and will not accept patients with medical conditions. Mr. Pelletier states that the first time he saw Justina at the new facility she was brought outside in 18 degree weather with a wet head, each subsequent time she has had dirty, greasy, matted hair. He does not believe his daughter is getting care she needs or the treatment she deserves at this facility.
As emotional a reaction as this information immediately stirs in us, we must keep in mind that all stories have two sides. The frustrating thing about this tale is that the other side, BCH and DCF, are unable/unwilling to give any pertinent information. The statement released by Boston Children’s Hospital is as follows:
“We are proud of their work and positive impact on the patient. [O]ur clinicians are particularly distressed that the inaccuracies surrounding this case have caused undo concern for the many children and their families with mitochondrial disorders in our care. Misleading reports suggesting that the hospital holds patients in its inpatient psychiatric unit do not recognize the role of DCF as the legal guardian or the challenges inherent in finding appropriate lower acuity facilities for certain patients.” (source)
As expected and appropriately for the hospital, BCH is defending its physicians and shifting responsibility to Massachusetts DCF.
The interviews with Mr. Pelletier have been decent, but I feel the reporting has missed some major questions:
- What is standard protocol for cases of alleged medical child abuse? Are gag orders typically placed by the court in these cases?
- What about the other families who have recently spoken up about similar experiences with BCH? What are their stories? Does BCH have a higher than normal number of cases reported to DCF than other pediatric hospitals?
- It has been reported that BCH is the “go to” hospital for Massachusetts DCF when they have medical cases. Is there a third party to review cases that involve BCH physicians? What is the hospital that is called? Did they review Justina’s case? Has everyone involved been vetted for relevant conflicts of interest?
- Why have the opinions of Justina’s physicians from Tufts not been treated with the same deference as the opinions of the BCH physicians?
Because the information is so limited in this case, I certainly don’t profess to have the right answer. However, one glaring question cannot be ignored:
If BCH is correct in their new diagnosis, and their new treatment path is working, why, after a year on this new plan, have we seen Justina’s condition decline instead of improve?
Something feels wrong here, and for the safety of this little girl I think we need to figure out what that is and make it right.
[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on February 23, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]