When Doctor’s Disagree

What happens when doctors disagree on a pediatric diagnosis?  What are the parents’ rights in a diagnosis dispute?  Do they have any?

Many of my faithful readers will be familiar with the story of Justina Pelletier.  I have been following the case of this 15 year old girl for several months.  For new readers I will give a quick recap here:

Justina is a 15 year old Connecticut girl, she had been diagnosed with Mitochondrial Disease at Tuft’s Medical Center by Dr. Mark Korson.  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 25^th, 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…

Barbie Dream Body

 When you were a kid did you ever want to look like Barbie?  No?  Me neither…her breasts were too big and her waist too small.  I always figured she would break in half in real life, or at least have chronic back pain.

Blondie Bennett though, has always dreamed of becoming a real life Barbie doll.  She says that she was obsessed with Barbie as a kid and has modeled her life after the doll.

photo credit: <a href="http://www.flickr.com/photos/dollobserver/5499591092/">The Doll Observer</a> via <a href="http://photopin.com">photopin</a> <a href="http://creativecommons.org/licenses/by-nc-nd/2.0/">cc</a>

Now 38, she has had five breast enhancement surgeries and at this point makes Dolly Parton look “natural”.  She also has regular Botox injections and lip fillers to make her appear plastic and doll like.  Believing that “natural is boring,” she has gone to extremes to make herself into a living doll.

The most extreme of her actions is to participate in hypnotherapy sessions multiple times a week.  The goal of this hypnotherapy is to lower her IQ.  Her ultimate desire is not only to resemble Barbie in looks, but also to become brainless like the doll as well.  To hear Blondie in her own words, please watch this video.

In my humble opinion, it appears that this desire to become Barbie even to the point of brainlessness masks a deep psychological pain in this woman.  To purposefully work to forget your life and become ignorant of the world seems to me a red flag to deeper issues. 

However, we aren’t here to judge or fix this woman.  I chose to write about her story for two reasons: 1, I found it fascinating and 2, I think it is an interesting way to highlight an important issue in our country.  The current trend in laws and policies makes us increasingly financially responsible for and beholden to one another.

Take the healthcare law for instance.  With health insurance being subsidized by tax payers, we have a financial interest in our fellow citizens staying healthy.  Right now Blondie’s rent is paid by a “special guy” and some of her procedures funded by other gentlemen in her life.  I presume that one day, as she ages, these gravy trains will cease to run.  Where then will her money come from?  What if she suffers back problems from the weight of her super enhanced bosom?  What if her treatments to become brainless work so well that she is unable to enter the workforce or even care for herself because of her forgetfulness?  Since she chose to put herself in that position, should American tax payers foot the bill for her future care?

If the answer is yes, doesn’t that give us a vested interest in her behavior now?  We see this idea play out in campaigns against: smoking, drinking in excess, eating junk food, not exercising, using recreational drugs, etc.  I am not saying that we should encourage these behaviors by any means, but since we are now financially tied together through healthcare, whether or not people stop the high risk behavior has a direct effect on the wallet of every tax payer.

Blondie Bennett may have a contingency plan for her future and continue to live a self-sufficient life.  However, her eccentric life choices are an interesting case study for how involved we should be in the choices of others when the future cost of those choices could fall on our shoulders.  Whether or not you agree with the changing healthcare system it will inevitably lead to new discussions and decisions regarding healthcare rationing as it relates to risky health behaviors. 

Mulling over interesting and quirky stories like this one, could give us good practice for the deeper and more complicated questions we are sure to face in the future.

Updates: Romeike and Pelletier Families

As my avid readers will know, I have been following the legal battles of two families very closely over the past year.  Both families have had an exciting week.

The Romeike Family

The Romeikes are from Germany, they petitioned the United States for asylum so they could have the freedom to homeschool their children.  Homeschooling is illegal in Germany due to a law put in place by Hitler in the 1900s.  For the background on this family please see my article: Why Should We Care About the Romeike Family?

Early this week the Romeikes’ legal petition for asylum received a death blow.  Their petition had been denied by a lower court and they were waiting to hear if the United States Supreme Court would hear the case.  The US Supreme Court denied this request early this week feeling it was not important enough to be heard by them.  The next day, the Department of Homeland Security contacted the legal team for the Romeike family and informed them that they could stay in country indefinitely even though the court had ruled against them.

I am thrilled for this family and so grateful that they can stay in the United States and school their children in accordance with their beliefs.  However, I do not believe we have seen the last of these stories.  There is a reason the government pursued this case to the extreme that it did.  In my opinion, they were looking for a precedent to be set that homeschooling is not a basic human right. 

I am beyond disappointed that the US Supreme Court decided this case was not important enough to review.  I believe passionately that homeschooling is a right and that the Court should have been willing to hear this case and rule that the determination of what is proper education for the children is an undeniable right of their parents.

Interestingly, the US Supreme Court decided this week that it would hear the case of a convicted murderer, who is petitioning the court for the right to keep his beard, which would disobey the rule of the prison.  He states that the prison rule violates his religious freedoms as a Muslim.  I am not trying to say that this case isn’t worthy of the notice of the US Supreme Court, but I don’t understand how Christians petitioning asylum to homeschool their children, stating religious persecution from their home country is somehow less worthy of the Court’s attention.

I fully expect to see more persecution of US homeschooling families in the future; the current administration appears to be hostile to the rights of homeschoolers.  Constant vigilance has been the key to survival for the homeschooling community since I became an active part of it in the 1990s.  I will remain vigilant and I encourage everyone else to do the same.  The evidence is on the side of homeschoolers, who regularly outstrip public school students in education level and (though it is hotly debated) social skills.

The Pelletier Family

The Pelletier family has been fighting for the return of their daughter Justina, who is currently in the custody of the Massachusetts Department of Children and Families.  For back ground info on this case please read: Hospital vs. Parent, The Pelletier Family v. Boston Children’s Hospital, and Pelletier Opinion Pieces: Best and Worst.

After the recent public outcry the judge (same judge as before) has decided to allow Justina to return to her original medical team at Tufts.  Also, the Department of Children and Families has dropped the contempt of court charges on Lou Pelletier for breaking the gag order.  This is a positive step, but this battle will not be over until Justina is returned to the custody of her parents.  Massachusetts Department of Children and Families is also trying to transfer her to the custody of the Connecticut Department of Children and Families, at this point Connecticut is refusing to accept this transfer.  There are also at least a dozen Connecticut legislators that have become involved in this case on the side of the Pelletier family.

The decisions in this case disturb me as well.  Don’t get me wrong, I am thrilled that she is being transferred back to her original doctors at Tufts.  However, If the judge was so convinced that the Pelletiers, as well as the team at Tufts, were abusing this girl, why did his opinion change so quickly once the public became aware and involved in the case? 

He was sure enough to retain state custody of Justina for 13 months and the only recent change has been the public’s involvement and interest in the case.  Call me old fashioned, but I don’t think the 6^th amendment involves the judge changing his mind based on public outcry.  If the transfer to Tufts is in the child’s best interest (what the judge is supposed to be deciding) why did it take 13 months and massive public pressure for the decision to be made.

I was glad to hear that some media outlets still plan to follow this story closely and investigate the Massachusetts Department of Children and Families and Boston Children’s Hospital for ulterior motives, and wrong doing in this case.  I will continue to follow this story as well.