Justina Pelletier
February 26, 2016 8:41 AM   Subscribe

The family of Justina Pelletier has filed a lawsuit against Boston Children's Hospital; in 2013, while being treated for a suspected mitochondrial disease, the physicians at Boston Children's intercepted the teen's care, believing her issues were psychosomatic. When her parents attempted to get her discharged, the Massachusetts Department of Children and Family Services stepped in, and Justina was placed in a psychiatric unit. posted by roomthreeseventeen (22 comments total) 11 users marked this as a favorite
 
When her parents disagreed and sought to transfer her back to Tufts, Boston Children’s called child protection, asserting that the parents were harmfully interfering in her care. Although the Tufts geneticist supported the mito diagnosis, a juvenile court judge deferred to Boston Children’s assessment, and Justina’s parents lost custody. After more than 16 months in state custody, much of it spent in a locked psychiatric ward, Justina was finally returned to her parents — still in a wheelchair, still sick.
This is terrible.
posted by Fizz at 8:54 AM on February 26, 2016 [7 favorites]


In 2013, a governor’s task force in Michigan stated that "many cases of Medical Child Abuse go undetected because caregivers are skilled at deceiving the medical community."

The task force identified these warning signs of medical child abuse: a "highly attentive parent" who is "unusually reluctant to leave his/her child’s side"; a parent who "demands second and third opinions"; a parent who "is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital"; and a parent who has "unusually detailed medical knowledge."


Oh, okay, got it. Otherwise known as "a good parent."

*shaking head in disbelief*
posted by lock sock and barrel at 9:11 AM on February 26, 2016 [19 favorites]


The weird thing about the comments on the Boston Globe article is how many of them are full of partisan politicking.
posted by suelac at 9:12 AM on February 26, 2016 [1 favorite]


It's worth mentioning that there was a lot more to this than what boston.com is reporting. Children's can't publicly comment on any of the proceedings because of privacy laws, so what we get is necessarily slanted toward what the family and its spokespeople say. It wasn't just a rogue doctor who decided to change treatment on a whim. After the initial action by DCF, the case made its way through MA courts (because DCF in her home state refused to take the case, even when told outright "she will stay in the care of DCF in Massachusetts until you agree to investigate this"), and numerous psychiatric professionals all testified to essentially the same point: she has a somatic disorder that her parents are actively encouraging.

I doubt we'll ever get the full story here, because it would violate countless laws and Justina's right to be left alone, but it would be a mistake to assume that we're getting both sides of this argument through the Globe.
posted by Mayor West at 9:14 AM on February 26, 2016 [23 favorites]


I doubt we'll ever get the full story here, because it would violate countless laws and Justina's right to be left alone, but it would be a mistake to assume that we're getting both sides of this argument through the Globe.

That's why I linked to other sources, including NYT and a website that published the government's emails about the case itself.
posted by roomthreeseventeen at 9:19 AM on February 26, 2016 [2 favorites]


This whole thing is a literal nightmare.
posted by tobascodagama at 9:21 AM on February 26, 2016 [6 favorites]


numerous psychiatric professionals all testified to essentially the same point: she has a somatic disorder that her parents are actively encouraging.

Given the willingness of medical professionals to attribute the health problems of women to psychological issues, I think it's worth being circumspect about how much weight we give this evidence.
posted by Bulgaroktonos at 9:23 AM on February 26, 2016 [51 favorites]


It sounds like a diagnosis of Munchausen syndrome by proxy, where parents make children sick in order to garner sympathy for themselves. Such cases do exist.
posted by ckridge at 9:27 AM on February 26, 2016 [5 favorites]


The weird thing about the comments on the Boston Globe article is how many of them are full of partisan politicking.

Probably because Glenn Beck and Personhood USA are all over this case, which is why the government emails are being published by The Blaze. This is a horrible situation, but is there a different link to the emails, maybe someplace with slightly more journalistic integrity? I haven't been able to find one yet.
posted by Orange Dinosaur Slide at 9:30 AM on February 26, 2016 [1 favorite]


That's why I linked to other sources, including NYT and a website that published the government's emails about the case itself.

Sorry if that sounded like I was complaining about bias in the FPP, that's not what I meant to imply. Coverage in the papers has been extremely-one sided, and while it's totally possible that MA DCF were unreasonable monsters who only wanted to remove a child from her loving family (which is the position the Globe took from Day 1, prompting Anonymous to DDoS the hospital and eliciting a slew of death threats via Twitter), my guess is that everyone was acting in good faith and the DCF showed enough evidence that the judge was leery of relinquishing custody to parents who might or might not be abusive. Certainly it didn't do anyone any good when CT refused to open a case nearby her home.
posted by Mayor West at 9:32 AM on February 26, 2016 [4 favorites]


That's why I linked to other sources, including NYT and a website that published the government's emails about the case itself.

It would be a mistake to assume we're getting both sides of the story through any and all media sources.

Mayor West's comment should be included in the FPP. Maybe BCH and MA DCFS made numerous errs in jurisprudence and moral judgement... maybe BCH and MA DCFS are both malevolent forces who's secret purpose is actually to torture their wards... maybe BCH was actually trying to do their best to protect the child's long term health... who knows... we certainly never will. All I know is there is no way for the defendants in this case to publicize the pertinent clinical details and their rationale, and for good reason. Likewise, if any leaked information (e.g. government e-mails) contained protected health information and a third party disseminated that without the families permission that third party could also be breaking the law (my knowledge of HIPPAA gets hazy here but those super long disclaimers at the bottom of hospital work e-mails sure make it seem that way).

I hope justice is served and I hope the child in question has a long full and healthy life. But there is no way, as strangers on the internet, we are going to get to make an informed judgement on where justice may lie.
posted by midmarch snowman at 9:34 AM on February 26, 2016 [2 favorites]


Tufts shut down the mitochondrial clinic and eliminated the position of the doctor who had diagnosed and referred her, following an internal review.
posted by thetortoise at 9:35 AM on February 26, 2016 [10 favorites]


I hope justice is served and I hope the child in question has a long full and healthy life. But there is no way, as strangers on the internet, we are going to get to make an informed judgement on where justice may lie.

While this is true, locking the child up in a psychiatric hospital for more than a year without access to the outside world seems worthy of a civil rights lawsuit on her own behalf.
posted by roomthreeseventeen at 9:38 AM on February 26, 2016 [11 favorites]


Yeah, this is what happens when all the major newspapers get decimated due to their good journalists leaving. (See: Trump.) Wish I knew what the answer was.

Children's is in the news again, they're being criticized for wanting to put a building expansion on top of a beloved outdoor garden, where many children's ashes have been scattered among other things. Globe story.

No good answers anywhere.
posted by Melismata at 9:42 AM on February 26, 2016 [1 favorite]


While this is true, locking the child up in a psychiatric hospital for more than a year without access to the outside world seems worthy of a civil rights lawsuit on her own behalf.

This is the part that seems particularly horrific to me. Either the media is willing to suggest that the diagnosis here is suspicious but isn't willing to point out things that happened that made her a glaringly obvious risk to herself or others... or it looks less like she was hospitalized than that she was institutionalized.

Even if it's a psychiatric problem, it's troubling to see how many people don't see it as particularly extreme to deprive of a teenager of school, church, friends and even a facsimile of family for that length of time. Having even a severe psychiatric problem doesn't mean you lose your right to those things. But Justina seems to have been kept in this locked ward not because she genuinely required that level of restriction in order to, well, not die... but because DCFS couldn't find a foster placement for her. They seem to have been looking by summer 2013--and yet she seems to have remained in the locked ward until January 2014. Even then, she seems to have been put in a residential treatment facility instead of into foster care.

So, if we assume that her parents really shouldn't have had custody of her, where we wind up is that if your case is sufficiently complicated by said parents... the state can effectively imprison you in inpatient psychiatric care until it can sort all of that out. That's terrifying. Inpatient has its place, but it is not a holding tank for kids when you don't know what to do with them.
posted by Sequence at 11:49 AM on February 26, 2016 [27 favorites]


Exactly, Sequence. The actual diagnosis here is almost beside the point.
posted by tobascodagama at 11:52 AM on February 26, 2016


thetortoise: Tufts shut down the mitochondrial clinic and eliminated the position of the doctor who had diagnosed and referred her, following an internal review.

That probably doesn't have anything to do with this case, but it's a huge blow to the doctor's 500 patients.



ckridge: It sounds like a diagnosis of Munchausen syndrome by proxy, where parents make children sick in order to garner sympathy for themselves. Such cases do exist.

They do exist, but they're rare. It's like the authors say in the second link (the NYT opinion piece), there are more people with Mitochondrial Disease (and other rare, hard to diagnose diseases) then there are people trying to pull the Munchausen thing. But there's this enormous urge to label and stigmatize patients with conditions that don't fit the pattern of what is known, and to do the same to the people who care for them if they resist the pronouncements of doctors.

When "do no harm" means doing the least you can possibly do for a patient, then something has gone wrong with medical ethics.
posted by Kevin Street at 6:09 PM on February 26, 2016 [6 favorites]


But there's this enormous urge to label and stigmatize patients with conditions that don't fit the pattern of what is known, and to do the same to the people who care for them if they resist the pronouncements of doctors.

Especially if they're female, as Bulgaroktonos alluded to upthread.
posted by tobascodagama at 7:39 PM on February 26, 2016 [1 favorite]


The task force identified these warning signs of medical child abuse: a "highly attentive parent" who is "unusually reluctant to leave his/her child’s side"; a parent who "demands second and third opinions"; a parent who "is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital"; and a parent who has "unusually detailed medical knowledge."

> Oh, okay, got it. Otherwise known as "a good parent."


A good parent "is not relieved or reassured when presented with negative test results"?
posted by Tell Me No Lies at 4:59 PM on February 27, 2016 [1 favorite]


No, because there is still something wrong with their child, and no one knows what it is.
posted by Brocktoon at 5:30 PM on February 27, 2016 [5 favorites]


Isn't she 18 at this point? And she has also spoken up for herself and given interviews.
posted by geeklizzard at 8:28 PM on February 29, 2016 [1 favorite]


Yeah, this is what happens when all the major newspapers get decimated due to their good journalists leaving.

Source? Haven't the newsrooms of the big papers been actually growing lately?
posted by cell divide at 8:31 PM on February 29, 2016


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