Home at Last: Justina Pelletier Gets her Happy Ending

On Tuesday afternoon Lou Pelletier’s cell phone rang, it was his wife’s name on the caller ID, when he answered the voice he heard was his baby girl, Justina.  “Daddy, Daddy, I am coming home.”  The 16 month battle between the Pelletier family and the state of Massachusetts has finally come to an end.  On Wednesday, June 18^th Justina was transferred back to her family home in Connecticut and the case between her and the Massachusetts Department of Children and Families (MaDCF) was closed.

On May 30^th the Pelletier family and MaDCF filed motions to have Justina reunited with her family stating that all four requirements of the reunification plan had been met.  Since May 30^th the motion has been on the desk and at the mercy of Judge Johnston.  He approved the plan on June 17^th and Linda Pelletier, Justina’s mother, was able to take her home the next morning.

I believe this is in no small part due to the public outcry, phone calls to the Massachusetts powers-that-be, and extensive media coverage of this case.  Thank you to all of my readers who joined the fight for this little girl.

Her journey, in a sense, is just beginning.  She is confined to a wheelchair, it is unclear if she received adequate schooling during her time in the custody of MaDCF, and her forced separation from family will certainly leave scars.  Her family plans to find her appropriate physical therapy, assess her schooling needs, and start the journey to emotional healing.  They are under no delusion that their world will return to the normal they used to know, but are determined to help Justina heal and create a new normal for the family.

Lou Pelletier is overjoyed to have his daughter home and said his main focus at this time is her health and safety.  However, he plans, with the help of Liberty Counsel, to pursue legal action against MaDCF in the future. His goal is to ensure this never happens to another family and create a “Justina Law” to protect the families of children with rare diseases against flagrant charges of medical child abuse and secure parental rights in medical dispute cases.  A noble goal and I wish him well on his journey.

Thank you again to all of my devoted readers for helping get the word out about this case and indulging my obsession.  For the foreseeable future I think I am done writing about the Pelletier family.  I will however be watching as Liberty Counsel and Lou Pelletier pursue legal action against MaDCF.  Hopefully the next time the name Justina Pelletier appears on this blog it will be under the headline “Justina’s Law Takes Effect.”

When Being Wrong is Unacceptable: More on the Department of Children and Families and Justina Pelletier

Alright, as many of you certainly know I have developed an addiction to the Justina Pelletier case.  I promise someday I will write on another topic, but today is not that day.  If you haven’t been privy to my latest obsession please see: When Doctor’s Disagree.

An opinion I hear for too often is that this is a “conservative” story, driven by “conservative” groups and media.  I don’t understand this claim, how is a story about parental rights only a conservative issue?  What if Boston Children’s Hospital (BCH) did overreach on this family, the Massachusetts Department of Children and Families (MA DCF) rubber stamped this case, and the court showed bias toward MA DCF in their decision, wouldn’t that be important to parents of all political beliefs? 

As I have said in every article about Justina, we need to remember that we are only seeing half of the story.  Because of this we do need to be a bit skeptical and cautious in forming an opinion.  Though, it seems that there is enough of a question to keep watching this story.  The best thing to do is investigate with an open mind and a calm nature.

There are two main opinions on DCF swirling around this case.  The first comes from those who side with BCH and believe that the hospital and MA DCF are justified and must certainly have evidence against the family that they are unable to share due to privacy laws.  This opinion is represented well here.  The article reminds us to not lose all faith in the medical community because of this story and that the vast majority of providers are appropriate at BCH, even if this story is true.   Pediatric providers have a deep love for their profession and a passion to help the children in their care.  Cases like Justina’s can make us lose sight of this and develop an irrational fear of pediatric medical professionals.   We must not allow our concern in this case to shape our judgment of all pediatric clinicians.

The second opinion is one that is very critical of child protection departments throughout the country.  An article explaining this case and the inadequacies of child protection services in general can be found here.  The author explains how child protective services employees often develop the idea that most parents will abuse their children and even a whisper of possible abuse should be acted on with the removal of the child. 

At this point I want to clarify a part of my opinion that I realize may not yet be clear.  Though I feel that there may have been overreach by the state of Massachusetts in Justina’s case, I do not believe the goal of MA DCF, BCH, or their employees has been to harm this girl.  I believe every person in this case is working for what he/she feels is in Justina Pelletier’s best interest. 

I work in pediatrics currently and frequently disagree with choices parents make for their children, but my respect for the institution of parenthood reminds me that people are entitled to make choices for their children that I consider wrong.  It is only in the direst of circumstances that anyone is entitled to intervene.  It is not always easy, but I remember that my view is merely a snapshot and that parents have the right to raise their children as they see fit.  Even if their home isn’t perfect (keep in mind that no home is), we must consider the harm done by removal versus the harm (or potential harm) done in the home.

Unfortunately, it doesn’t appear that this evaluation is always done appropriately.  The reality is that there is always harm done to a child when removed from their parent’s custody.  Sometimes, it is warranted, but should be a last resort because of the psychological turmoil removal has on the child.  When removing parental custody, it is absolutely and ALWAYS unacceptable for DCF to be wrong! 

Anyone who works for child protective services should work under a constant fear of being wrong, as deeply as or even more deeply than the medical community fears mistakes.  The responsibility given to those who work for DCF is intense and workers should feel the weight of that responsibility.  It is unacceptable for these agencies to become reactionary, ie remove a child too quickly and find proof for the removal later.  I am not saying that this happened here, though we must admit it as a possibility.  I am trying to make the broader point that DCF should be under the strictest regulation, and that the burden of proof should be on their side for removal of a child.  The bar should be set high, weighted always on leaving the child with their natural family unless serious and imminent harm is certain.

Since we have said that a harm comparison should be done, let’s use the information we have in the Justina Pelletier case to compare her life with Mom and Dad vs. her life in DCF care:

Life with Mom and Dad

-          Participated in social activities (figure skating)

-          Attended and enjoyed school

-          Frequent medical appointments (possibly unnecessary)

-          Frequent medical procedures (possibly unnecessary)

-          Many medications (possibly unnecessary)

-          Family structure intact

Life in MA DCF Care

-          Over a year in institutions

-          No schooling (alleged by the family)

-          Deterioration of overall health and physical appearance (assessed by pictures and family report)

-          Less medical procedures (that were possibly unnecessary)

-          Fewer medications (that were possibly unnecessary)

-          Family unit and child’s normal support system fractured

It has also been alleged that Justina has not been allowed to participate in elements of her faith that are important to her.  If the parents are medically abusing their daughter this certainly needs to be dealt with, but to add intellectual, emotional, physical, and psychological harm to this child under DCF care is not the way to handle it. 

Remember that there are respected physicians who have cared for this child for years and feel she has Mitochondrial Disease and that the family has appropriately dealt with this diagnosis.  This case is not cut and dry, one respected physician’s opinion is in direct opposition to another and a child’s care and wellbeing hangs in the balance. 

I have said it before and will say it again: It is unacceptable to be wrong.  In any DCF case there should be a harm analysis and abuse, willingly or unwillingly inflicted by the government agency on the child needs to be addressed and appropriately handled.  It does no good to move a child from a potentially harmful environment into a definitely harmful one.

Pelletier Opinion Pieces: Best and Worst

In addition to the news articles on the Justina Pelletier case there have been some interesting opinion pieces written.  I will discuss the worst and best pieces I found in this post

The Worst

“The Blaze,” is the offender for the worst opinion piece: “What We Found in a Boston Children’s Hospital Policy Manual About Research on ‘Wards of the State’”

The article talks about a policy at Boston Children’s Hospital (BCH) allowing wards of the state to be enrolled in clinical research under certain circumstances.  The BCH policy is as follows:

“Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit (46.406 (50.53) or 46.407 ( 50.54) only if the [institutional review board] determines and documents that such research is

Related to their status as wards; or

Conducted in schools, camps, hospital, institutions, or similar settings in which the majority of children involved as participants are not wards.”

I have worked in clinical research for several years, currently work in pediatric clinical research, and have my Masters degree in Research Ethics, so I can tell you without a doubt that this policy is normal.  It follows the federal regulations for research involving minors, and is standard for institutions participating in pediatric clinical research. 

The article above insinuates that this policy allows BCH to use wards of the state as guinea pigs for their research when in fact it mandates additional restrictions to prevent this from happening.  In the end, we don’t even know if Justina has been enrolled in any clinical trials at BCH, so the whole issue is moot and this article pretty pointless.  I am usually impressed with the reporting of The Blaze, but was extremely disappointed with the sensationalized nature of this story.

When this kind of misinformation is spread, it creates an unnecessary fear of clinical research by patients and families.  The clinical research world has worked very hard for many years to make trials as safe as possible and we constantly reevaluate the regulations to make sure we are protecting participants in the right way.  Clinical research is vital to medical advancement and to see it turned into a way of inciting fear makes me very angry.

The Best

The best opinion piece I found was an article by Lauren Stiller Rikleen: “A Cautionary Tale: How Unconscious Biases Can Deliver Flawed Medical Judgments”

The Pelletier family was told that one of the reasons the Massachusetts Department of Children and Families (DCF) was called is because they were being too difficult about their daughter’s treatment.  The article above advises physicians to use caution when judging a family’s reaction in medical situations, and not to bring social services into the picture too quickly. 

It is entirely normal for parents of a chronically sick child to be emotional when their child is at the hospital, also these parents care for the child day after day and are usually well versed in their child’s medical needs.  It can be frustrating for these parents to explain their child’s needs over and over to different physicians, knowing what the child needs, but having to navigate another medical institution to get it.  This stress makes some families difficult to deal with as a hospital staff member, but this in no way means they are unfit parents or that their child is better off as a ward of the state. 

The author also has a child under the care of Dr. Korson, Justina’s Tufts physician, so this brings an added element of insight to her perspective on this case.  The article was very well thought out and very well written.

The Pelletier Family v. Boston Children’s Hospital: The Battle Continues

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.

Hospital vs. Parent

The country has been abuzz with discussion of the sad case of Jahi McMath.  She is a 13 year old girl from Oakland California who went in for a routine tonsillectomy on December 9^th, 2013.  While recovering from surgery Jahi went into cardiac arrest, she was placed on ventilator support, but was shortly thereafter pronounced brain dead.  Jahi’s family has refused to remove her from life support claiming that she is alive so long as her heart continues beating.

The idea of brain death can be confusing for many people.  It is determined by a neurologist, through exams and scans.  The neurologist will do an extensive exam to check reflexes controlled by the brain stem, this involves checking reflexes of the eyes and changing ventilator settings to see if the patient will attempt to breathe on their own.  If these reflexes are not noted during the exam, the patient is pronounced “brain dead,” in 49 of the 50 states “brain death” is considered death, New Jersey is the exception.

It can be a tough concept to realize that a person with a beating heart can still be considered dead, but with modern technology the only reason Jahi is breathing is because the ventilator is pushing air into her lungs.  Legally, Jahi is dead, a death certificate has been issued with the date of Dec 12^th, 2013, 3 days after her tonsillectomy.  Most recently, the family has found an extended care facility that will accept Jahi and her body has been released to the custody of her mother for transport to this facility.

It seems that all of the major news outlets have picked up this story.  It is certainly heart wrenchingly sad, Jahi was a beautiful young girl with a loving family, but why the media focus on this girl and her final days?  Honestly, I don’t see an ethical issue in this case.  I see a devastated mother who has just lost her teenage daughter and is struggling to let her go.  This woman deserves our compassion and our prayers, we should not be treating her pain like a spectator sport.

It interests me that the media has focused so heavily on the story of Jahi McMath while another hospital vs. Parent story has been unfolding, almost unnoticed, on the other side of the country.  I have been following the sad tale of Justina Pelletier over the last few months.  Justina is 15 years old, last February she was taken to Boston Children’s Hospital for flu like symptoms.  Prior to this admission, she had been diagnosed with and treated for Mitochondrial Disease at Tufts. 

Mitochondrial Disease is a very rare and controversial disease.  It varies from patient to patient and treatment is based mostly on relieving symptoms rather than curing the disease.  The diagnosis is relatively new and many physicians believe that it has potential to be misused by parents who over medicalise their children.  Over-medicalization of children can be referred to as medical child abuse, the idea is that parents induce symptoms or insist on treatments (medications and surgeries) for children who are not actually sick.  Because Mitochondrial Disease varies so much from patient to patient it is considered a diagnosis that is highly susceptible to medical child abuse.

Not long after Justina arrived at Boston Children’s the staff changed her diagnosis from Mitochondrial Disease to Somatoform disorder.  Somatoform is a psychological condition where the patient presents with real symptoms, but those symptoms have no physical cause.  With this new diagnosis the staff at Boston Children’s proposed to stop all of Justina’s current medications and move her to Bader 5, the psych ward at Boston Children’s. 

Justina’s parents disagreed, quite vocally, with this decision and asked the staff to confer with Justina’s Tufts physician who had been treating her Mitochondrial Disease.  Justina was moved, against her parents’ wishes, the hospital called child protective services and the Pelletier’s lost custody of their daughter.  Justina has been in Bader 5 since February of last year and her parents have been tirelessly fighting to regain custody.

For 11 months this 15 year old girl has been held against her will at Boston Children’s Hospital, with only one hour of supervised visit time with her family per week.  Where are the cameras?  Where is the media frenzy?  Why hasn’t this story taken off like Sarah Murnaghan, the 10 year old lung transplant patient from this summer, or the “send pizza” sign in the cancer patient’s window, or the sad tale of Jahi McMath?

There are no CNN, MSNBC, or Fox News stories on Justina.  The Boston Globe reported the story, but not until Justina has been in the hospital for 10 months. 

As more information surfaces about this story, it seems that Justina is not alone, at least 4 other families have experienced similar treatment at Boston Children’s Hospital in the last 18 months.  I work at a pediatric hospital and understand that there are parents who do not properly love their children and that there are situations where child protective services should be called.  I don’t know enough about the Pelletier family to make a judgment, but I see enough smoke coming from Boston Children’s on this issue to look for a fire.

How many reports of medical child abuse is average for a pediatric hospital?  Is Boston Children’s above average?

When another respected physician had diagnosed this child with Mitochondrial Disease, why was Boston Children’s allowed to change this diagnosis without consulting her treating physician?

What are a parent’s rights regarding the health care of their child?  Do they have the right to a second opinion?

This story is fascinating and yet on most major news outlets…crickets.  Why? 

Personally, I think we should be talking about Justina, about a pediatric hospital’s responsibility to report abuse, whether a hospital should be held accountable if found to be over-reporting abuse, and what rights a parent has or should have when it comes to medical care for their child.

As of a court decision yesterday, Justina will be transferred out of Boston Children’s Hospital to an independent psychiatric facility in Connecticut.  Her parents have not regained custody, but are hopeful that this transfer will help them in their quest.  My hope is that this transfer allows answers to be found for this young girl and that her safety will be a priority for the decision makers.