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04/21/2014

Being Wrong is Unacceptable: The Continued Saga of Justina Pelletier

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

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.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on April 20, 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.]

 

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