by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)
What happens when doctors disagree on a pediatric diagnosis? What are the parents’ rights in a diagnosis dispute? Do they have any?
Many readers will be familiar with the story of Justina Pelletier, a 15 year old Connecticut girl diagnosed with Mitochondrial Disease by Dr. Mark Korson at Tuft’s Medical Center . In February of 2013 Justina developed the flu, Dr. Korson suggested that the family take Justina to Boston Children’s Hospital (BCH) to see her gastroenterologist who had recently moved to BCH.
When the family arrived at BCH they were told they would not be allowed to see the gastroenterologist, the staff at BCH quickly changed Justina’s diagnosis from Mitochondrial Disease to Somatoform Disorder, a psychological condition that manifests in physical symptoms. They stopped all of her medications and moved her to the psychiatric ward of the hospital. When the parents objected and said they were going to return their daughter to her doctors at Tufts the hospital made allegations of medical child abuse and the Massachusetts Department of Children and Families (DCF) took temporary custody of Justina. The parents have been fighting to regain custody ever since.
The theme of the many, many court dates has been postponement, but a decision was finally made last week. Judge Johnston granted “permanent” custody to DCF. This ruling cannot be reviewed by the court for 6 months, the judge backdated the decision to December, so the family’s next court date is May 25th, 2014.
In January, Justina was moved to a non-medical psychiatric facility. The average stay at this facility is 2 weeks or less, she has now been there over 2 months. Her family feels that this is a dangerous environment for Justina. According to her father, Lou Pelletier, before developing the flu last year his daughter was a typical active teenager, she handled her chronic illness well and enjoyed activities such as figure skating. By the time she was moved to this non-medical facility in January 2014, she was confined to a wheelchair barely able to walk.
The family’s position is that Boston Children’s Hospital and Massachusetts DCF have kidnapped their daughter and are neglecting her medical needs to a point that her life is in imminent danger.
Lou Pelletier has been on a media campaign to raise awareness of his daughter’s condition and situation. The family’s last big media appearance was on the Dr. Phil show about two weeks ago. The episode was well done and featured opinions from many experts on custody battles. The overarching theme was that any custody case involving the state should focus on creating a safe environment at home so the child could return to the family. This is done through investigation of the home and family life, counseling, education, etc. basically whatever is necessary to reunite the child with his/her family. According to the Pelletier family no investigation has been done and they do not feel that Massachusetts DCF has any intention of working to return custody of their daughter.
The trouble with this story is that we only have the Pelletier family’s side, DCF has remained extremely tight lipped, making very few statements regarding the case, none that have been particularly informative or helpful. From all appearances the family is calm, together, medically literate, and rational. I recognize that their side of the story is certainly biased and we must keep that in mind, however with the silence from DCF, lack of criminal charges toward the parents, and drastic difference in this girl through photos from this year and last, the family’s story appears to be credible.
A few weeks ago Judge Johnston ruled that Justina’s medical care be transferred from Boston’s Children’s Hospital back to Tufts. This was considered a win for Justina’s family, and the parent’s called to help facilitate Justina’s appointment with Dr. Korson. Massachusetts DCF refused to take Justina to Tufts prior to this most recent decision, it remains to be seen what they will do now that they have been granted custody.
One of the things I fail to understand in this case is how BCH could override the diagnosis from Tufts and because they make a new diagnosis have grounds to remove this child from the custody of her parents. What are a parent’s rights in healthcare situations? Do they have the right to decide: who treats their child, which doctors to trust, or whether to seek a second opinion?
A key player in the new diagnosis of Somatoform Disorder was Simona Bujoreanu, PhD. Somatoform Disorder takes a very long time to diagnose, before a diagnosis can be confirmed the physician must rule out any possible medical cause. Physicians at Boston Children’s Hospital allegedly diagnosed Justina with Somatoform disorder in just 12 hours.
I think it is important to focus on Dr. Bujoreanu because of an article she wrote a few years ago. The article is titled: “Approach to Psychosomatic Illness in Adolescents.” Dr. Bujoreanu claims in this article that “20-50% of all patients complaining of physical symptoms can be categorized as having medically unexplained symptoms.” As the article goes on she seems to claim that psychosomatic diagnoses are a catch-all for these patients with symptoms that cannot be immediately medically explained. She makes broad strokes about what can be considered psychosomatic and does not focus on how time consuming a diagnosis like this should be. She talked about how families may react badly to a psychosomatic diagnosis, but did not stress how careful a psychologist should be in making the diagnosis.
In Justina’s case her physical symptoms had been explained by a diagnosis of Mitochondrial Disorder, the doctors at Boston Children’s Hospital simply rejected this diagnosis. I think doctors need to be extremely careful when countering the diagnosis of another physician and if the new diagnosis is psychosomatic even more time and evidence will be needed.
The decision of the judge this week was very disappointing. The family has been investigated by Connecticut Department of Children and Families and nothing was found. Connecticut Department of Children and Families has repeatedly turned down a transfer of Justina to their custody, presumably because they have previously cleared this family. I also feel very strongly that before a child is placed in “permanent” foster care against the express wishes of the family, some sort of criminal charges should need to be filed against the parents. I am frankly appalled that something like this could happen in America.
Parents should be allowed to disagree with a diagnosis and to have their child treated by the medical professional of their choice. If the child is in danger of abuse or neglect by a family member criminal charges should be filed along with the request for custody by the hospital or state. I am a very strong advocate for parental rights, and believe that excepting extreme cases custody of and decisions for children should remain with the parents. Parents need to have defined rights in medical situations, perhaps this case can motivate us to more plainly secure parental rights when a child is ill. I have said it before, but will stress it again, I am shocked and saddened that removal of a child from her family like this does not have to be associated with criminal charges against the parents.
I have so much to say about this case and I am sure I have not typed my last on this story. I was glad to hear that the family plans to continue the fight at the appellate court level. I will be following this closely as it develops, I hope you will as well. More to come …
[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on March 31, 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.]