Monday, December 16, 2013

Children caught between conflicting diagnoses

Yesterday's Boston Globe tells the first half of a story and today the second half comes out.   Depending on who you believe, Justina is either being kidnapped by the hospital, or she is being protected against a form of "medical abuse" originating from her parents.

The loss of patient autonomy (Justina is a minor, I'm assuming she is still under parents' guardianship ?) seems to be the most disturbing part of this story. She is 16 now, so when she turns 18 will she be able to declare her patient rights to autonomy and check herself out of BCH? Figuring out when parents love for their children becomes abuse is so hard. When will she be able to continue her high school education and go on with her life, in whatever condition ?

Although DCF has a mission to protect children and families that is undeniably needed in certain situations, their seemingly unbounded power itself is unsettling. In a way, if parents want to take their own minor children home, perhaps to die for their parents' beliefs (religious or medical), I have to wonder if that is another way natural selection works. I'm always open to hearing arguments and alternative views, but above is my initial response to a difficult situation on all fronts.

What do YOU think ?


  1. This two-part story is quite well done, I think, but it has the usual problem of a limited view into the hospital's perspective, because of confidentiality requirements and the fact the case is in litigation and the hospital can't or won't comment. The perspective I'd really like to hear is that of the nurses who have cared for Justina and worked with the family. But at least we'll learn what a judge thinks on Friday.

  2. Following a juvenile court judge's ruling, the Boston Globe reports that this teenager will remain in the custody of Boston Children's Hospital while a review is conducted. The judge is said to be open to returning the teen to her Connecticut family's care. See:

  3. It's possible that Justina will be transferred to Tufts in early February. Any information coming from firsthand observers and caretakers if and when the gag orders are lifted and it's possible to discuss the events will be helpful to guide interactions between hospitals, families, and everyone in between.

  4. The most disturbing part of this situation is that fact that Boston Children's would not allow her Mitochondrial Disease Specialist(Highly respected impeccable credentials) . or her GI to see her to provide continued care.

    In one year of them cutting off care for her Mitochondrial Disease she went from functional,walking,ice skating, to wheelchair bound,wobbly headed and drugged.

    We are not getting the whole story. If Boston Children's has decided that Mito is not a real disease, do you prove your point by isolating and locking up a patient, or do you follow chain of command and take your concerns to the Medical Boards and NIH? If treating her Mito allowed her to have a better quality of life but treating an imagined/suspected mental health disorder have left her completely disabled, which is better for the patient? Does the patient even count anymore? Or just pawns in the politics of medicine.

  5. If the parents hire a licensed doctor to care for their child, and follow his prescribed treatment regimen, then they have provided proper care for the child.

    IF (and that's a very big IF), another doctor can PROVE (yes. I said prove. As in EVIDENCE), that the original doctor made an incorrect diagnosis and incorrectly treated the child, then the original doctor should lose his license, and once that has happened, it should be up to the parents to choose another licensed doctor. The State can't claim that the doctors it licenses are competent, and then claim that the parent following that doctor's diagnosis and treatment are abusing their chld simply for following his medical advice.

  6. It is a violation of the doctor/patient relationship, to place the child in the care of a doctor or institution that has been part of a conflict that caused the child to lose her parents. There can be no trust in that relationship, and so the doctor and institution cannot effectively treat the child..

    A child should NEVER be placed in an institution that was involved in a custody dispute over that child. NEVER.

    It's like being abducted and raped, and going to the police, and having them hand you back to your rapist. Forcing a child to remain in a place she does not want to be, and have things done to her body that she does not consent to, are horribly emotionally and physically traumatic. To put her in that situation, in the hands of the doctor and institution who took away her liberty, her free will, the protection of her family.

    How can anyone fail to see the ethical violations in such an act? Why has no professional ethicist spoken up against such a travesty?

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