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.
I have watched Mr. Pelletier in the two major interviews
he did this past week: The Glenn Beck Program and The Kelly Files,
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:
o
Psychologists asking her why she allowed
doctors to perform past medical procedures on her when they were unnecessary.
o
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.
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