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Justina Pelletier’s Less-Than-Sweet 16

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Justina Pelletier turned 16 over Memorial Day weekend.  She was only 14 when the Massachusetts Department of Children and Families (MA DCF) took custody of her.  She has been hospitalized or institutionalized ever since.  Many of you will be aware that this is a story I have been following closely. If you are new to this tale and need further background on this family please see When Being Wrong is Unacceptable and When Doctors Disagree.

Earlier this month Justina Pelletier was transferred to a facility in Connecticut.  Though her parents still feel she should be home, they have said that this new facility seems to be taking better care of their daughter.  They are allowed more frequent visitation with her and are hopeful that she will soon be home.  Some friends were even allowed to visit and celebrate with her on her birthday.

Even though these are positive developments, the case as a whole is still very concerning.

In March of this year “permanent” custody of Justina Pelletier was awarded to the state of Massachusetts.  Prior to this, Justina’s care was ordered back to her original physicians at Tufts.  Since this case is a diagnostic dispute between the physicians at Boston Children’s Hospital (BCH) and Tufts, wouldn’t this transfer signify that the Tufts diagnosis of Mitochondrial Disorder was being upheld?  And, since the parents had been upheld on which doctors should treat their daughter, why did custody go to the state?  The logic in these decisions is not clear to me.

Shortly after the custody ruling in March the judge’s decision was leaked, trying to gain some additional perspective on the case I of course read it.  The full text can be found here.  My interpretation is as follows:

He made three main points:

  1. Disappointment that Connecticut Department of Children and Families (CT DCF) was unwilling to accept a transfer.
  2. Justina’s diagnosis
  3. Parental bad behavior

Let’s break down what Judge Johnston had to say about each of these issues.

First, the better part of his decision talked about his disappointment in CT DCF for refusing to accept a transfer of Justina.  He noted in his decision that CT DCF had investigated the Pelletiers and found that the home was an unsuitable environment for Justina (the Pelletier family claims the opposite).  Personally, I found the incessant mention of the CT DCF denial by Johnston to be (for lack of a better word) whiny to the point of ridiculousness and redundancy.  To be frank, I expect legal documents to be more professional and less petulant.

However, all that being said, I don’t understand why Connecticut is refusing the transfer.  I assume it is to avoid media attention and responsibility.  If they were to accept her, she would be closer to home and if (as the Pelletier family states) CT DCF in fact found no problem with the home, why not accept the transfer and release her to the custody of her parents?

Regarding the diagnosis, Judge Johnston states that there is a large amount of psychological and medical evidence to prove that Justina suffers from Somatoform disorder.  However, as mentioned above, his order to transfer her care back to her original physicians at Tufts is contradictory to this statement.  The Tufts physicians diagnosed Justina with Mitochondrial Disorder and will certainly treat her in accordance with their diagnosis.

The last belabored point in the decision, was a discussion of the parents’ poor behavior.  Interestingly, everything noted as poor behavior and the reasoning for removal of custody happened after Justina was initially placed in state custody.  The document states that the Pelletiers were:

  • Verbally abusive to BCH staff
  • Approaching other families at BCH and telling them that the hospital was kidnapping children
  • Threatening institutions that were planning to accept Justina as a patient
  • Contacting the media
  • Changing their minds about accepting a transfer to CT DCF upon the advice of new legal counsel.

To me, much of this seems like behavior that is par for the course when someone has been unnecessarily stripped of their parental rights and are grasping at straws to have their child returned.  I don’t deny that the behavior is rude, but being rude is not a reason to lose your parental rights.

Consider these parents: their daughter has been taken by the state of Massachusetts, they are extraordinarily limited in when they visit her and what can be discussed, they see her health declining and can do absolutely nothing to help her.  How calm and pleasant would you be if it were your child?

The bottom line is: judgment on whether or not a home is fit for a child should be based on facts about the home life.  Rude or uncivil behavior by the parents after custody has been removed from them is irrelevant and should be expected from any loving parent, as much as we would expect a mother bear to attack if she felt her cubs were threatened.

I am disappointed at the lack of consistency and logic I see in the decisions made by Judge Johnston.  If any of my more legally minded readers can shed light on this for the rest of us I welcome your insight, please leave a comment below.  As always, I will continue to watch and write about this case.

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

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