Tuesday, December 31, 2013

Sunday Globe Special: The Problem With Justina Pelletier

The message here is don't take your child to the hospital, and don't trust the state.

"A medical collision with a child in the middle; Justina has a metabolic disease. Or does she? Her parents and Children’s Hospital deadlocked, she was placed in state custody" by Neil Swidey and Patricia Wen |  Globe Staff, December 15, 2013

First of two parts

Just after midnight on a Sunday last February, a crippling storm had dumped 3 feet of snow on parts of New England.

In this age of global warm.... oh, never mind.

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After Justina Pelletier had been at Children’s for just three days, her new doctors changed course dramatically. During a tense meeting with Justina’s parents, the Children’s doctors said they believed their daughter’s problems were largely psychiatric, and they would be withdrawing several of the medications that her Tufts doctors had prescribed.

The parents — Linda in person and her husband, Lou, by phone from Connecticut — strongly objected. They complained that despite their repeated requests, Justina had still not been seen by her gastroenterologist. They became furious when the Children’s team informed the parents that they would be prohibited from seeking second opinions, including from Korson.

The next morning, Lou arrived at the hospital, still enraged. After conferring with his wife, he strode over to the ninth-floor neurology nurses’ station and introduced himself as Justina’s father.

“We have standing appointments for her at Tufts,” he said. “Enough is enough. We want her discharged.”

He assumed it was their right as Justina’s parents to remove their daughter and take her to the hospital of their choice. But behind the scenes, Children’s had contacted the state’s child protection agency to discuss filing “medical child abuse” charges, as doctors grew suspicious that the parents were harming Justina by interfering with her medical care and pushing for unnecessary treatments.

Now, as Lou scanned the neurology floor, he noticed that hospital security guards were blocking every exit, focusing their eyes on him.

* * *

Doctors disagree all the time over the diagnosis and treatment of patients, but Justina’s story reveals a new and remarkably contentious frontier in pediatric medicine. A difference of opinion among doctors at separate Boston hospitals escalated with stunning speed. Just a few days after Justina had arrived at Children’s on Sunday, Feb. 10, doctors were urging state child-protection officials to take emergency custody of the girl from her parents so that Justina would remain safe and get the care the hospital’s team recommended.

These cases are rare, but not as rare as one might think.

It's a parent's worse nightmare.

In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.

It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a “parent-ectomy.”

Typically in these cases, the child had been diagnosed elsewhere with one of several relatively new disorders that are complex, poorly understood, and controversial.

Whatever they can think of nowadays to get the pills down the emerging markets throats. 

The child’s medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child’s problems were more psychiatric than physical, that sparked the medical team’s concern, paving the way for the call to the state child-protection agency.

What parent wouldn't be stressed and difficult when you are taking away their child?

In Massachusetts, the Department of Children and Families investigates all child abuse and neglect complaints and is supposed to be a neutral referee assessing the charges against the parents.

Or not if you have been paying attention to what happened out in Fitchburg!

Many parents and their advocates complain, however, that the state agency, because of its lack of in-house medical expertise and its longstanding ties with Children’s, is overly deferential to the renowned Harvard teaching hospital.

There can be no denying that Children’s doctors and nurses provide remarkable care on a daily basis, saving lives and advancing medicine. And they’re legally obligated to report any suspicions of child abuse. But given its well-earned reputation, Children’s can sometimes be a difficult institution to challenge.

Thus the parents will get a lesson in what happens when you challenge in$titutional or state authority in AmeriKa.

Around the same time as Justina’s admission, a 5-year-old Massachusetts girl, who had been treated for mitochondrial disorder at Mass. General, arrived at Children’s. Within a couple weeks, her mother was escorted out of the hospital by security late on a Friday afternoon, and the state took emergency custody of the girl. For the first time in her life, she spent the night without a family member at her side.

Two other cases involved diagnostic disputes over a rare autoimmune ailment known as PANDAS. In one of them, the parents of a 16-year-old New York girl lost custody of their daughter in the fall of 2012, shortly after her arrival at Children’s. The teenager was moved into the hospital’s locked psychiatric unit, and remained out of her parents’ custody for seven months.

In a fifth case, state investigators did not substantiate Children’s allegations against the parents, but hospital representatives continued to encourage ongoing state involvement, long after the patient’s care had been moved to a different hospital.

“The fact that Children’s has so much power that they can get us in trouble with a totally different hospital across the city is appalling,” said Jessica Hilliard, the mother involved in that case. Her son Gabriel is being treated for mitochondrial disease. The state did open a new investigation but ultimately closed it.... 

Just protecting Children's, I'm $ure!

Many such parents used to be diagnosed with Munchausen by Proxy, a psychiatric condition in which they seek attention from the medical community by exaggerating, fabricating or even inducing a child’s illness. The new term avoids references to parental motivation.

When you think of it, it is how the newspaper tries to get us all hung-ho for wars. If this is the cause it's a tragedy all around; if not, the hospital and state got some 'splaining to do!

Noted child-protection specialists say signs of medical child abuse, whatever the motivation of the perpetrator, must be taken seriously.

And covered up if it involves rich and powerful people.

“If the parent won’t work with you, and you really think the child is suffering, you’ve got to act,” said Jenny, who until recently ran the child protection team at Hasbro Children’s Hospital in Providence.

How are things down at Hasbro anyway?

Still, allegations of suspected medical child abuse become far murkier when the parents’ assessment of the child is backed by reputable physicians at different hospitals. Some child-protection doctors, whose field has recently been elevated to a board-certified specialty, are beginning to draw criticism — even from some unlikely quarters.

The still and murk bother me.

Dr. Eli Newberger, a pediatrician who founded the child protection team at Children’s in 1970 and ran it for three decades, cautions that “doctors in this new specialty have enormous and really unchecked power.”

As an expert witness in cases around the country, Newberger said he’s seen a tendency for state child-welfare agencies to be “overly credulous to hospitals” and for some child protection teams to show a “reflexive willingness to label and to punish,” especially educated mothers who are perceived as being too pushy.

Uh-huh. So the state that is supposed to be serving you and that is so worried about your health is serving the in$titution instead, and if anyone is knowledgable speaks up about it they are slapped down hard!

Assertive parents, armed with information from Internet support groups and believing they’re advocating for their child’s best interests, risk alienating doctors and nurses, leaving them few allies if they find themselves accused of medical child abuse.... 

Of course the doctors and nurses are supposed to be concerned about the kid and not petty personality conflicts with the parents, right? 

--more--"

You question the doctor and are treated like that? They are getting as bad as the police.

"Frustration on all fronts in struggle over child’s future; Court works to untangle battle of parents, doctors, and the state" by Neil Swidey and Patricia Wen |  Globe Staff, December 16, 2013

Second of two parts

Dr. Mark Korson, a soft-spoken, goateed native of Canada, prided himself on always keeping his cool, even when the highly stressed patients and families around him were losing theirs.

Still, as the chief of metabolism at Tufts Medical Center sat in his cluttered third-floor office in Chinatown last April, his frustration began to boil over. Two months earlier, Korson had sent a 14-year-old patient, Justina Pelletier, to Boston Children’s Hospital to see a former colleague of his who had previously treated the girl for gastrointestinal problems. But things had rapidly gotten off track.

In short order, a team of different Children’s doctors had disputed Korson’s working diagnosis of mitochondrial disease for Justina and accused her parents of medical child abuse. This paved the way for the state child protection agency to intervene and strip the parents of custody on an emergency basis. From there, Justina, against her strong objections, was moved into the hospital’s locked psychiatric ward. Children’s and the state had ignored Korson’s requests to be included in a roundtable meeting to discuss Justina’s care.

Oh my Lord. If the poor girl is only sick and needing meds she must be in an absolute state of terror. I truly feel awful for the parents in this situation.

Staring at his desktop computer, surrounded by a sea of paperwork and multiple coffee mugs personalized with photos of his young son, Korson started to type....

I guess if a Canadian guy is going to get nasty things must be really bad.

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And that crack DCF looking out for the child's best interests?

"Child welfare agency still lacks medical guidance" by Patricia Wen and Neil Swidey |  Globe Staff, December 19, 2013

Seven years ago, after two tragedies, State House investigators identified a major flaw in the Massachusetts child-protection agency: It lacked medical expertise to help caseworkers sort out the complicated conditions affecting children under its watch. The findings led lawmakers to approve reforms, but today, very little has changed.

I know you readers come here thinking I'm off the rails sometimes saying government is rotten and no good even in the few events where they try to do good, and here we are again. What becomes clear is they can take care of certain intere$ts all right, but when they do something for the good it is either some other intere$t served at worst or a failure at best.

The position of physician medical director was funded by the Legislature but never filled by the agency.

So WHERE did that MONEY GO?

A plan to set up a standing panel of pediatric specialists to offer consultations on medically complex cases went unheeded by top state officials. To this day, if staffers within the agency need advice from medical experts, they are often left scrambling to find help on their own.

What?

“They have not set up a system to bring in the strong expertise that is available in the Commonwealth,” said Dr. Robert Sege, a pediatrician and child-abuse specialist at Boston Medical Center. “It’s a shame.”

And yet they seize the Pelletier kid?

The Department of Children and Families’ lack of medical expertise emerged this year as an issue in an emotionally charged case involving a 15-year-old girl who has been at Boston Children’s Hospital for the past 10 months, most of it in the locked psychiatric ward, according to a two-part series in The Boston Globe earlier this week....

Who wouldn't be emotional?

The medical staffing at the state agency had long consisted of a few nurses in the central office. But that level of resources came under scrutiny after two high-profile cases in 2006 in which parents managed to manipulate the medical system while under the agency’s watch.

A 4-year-old Hull girl, Rebecca Riley, was killed by an overdose of psychotropic drugs, and an 11-year-old Westfield girl, Haleigh Poutre, nearly died of overlooked long-term physical abuse.

They were feeding her pre$cription dugs so they could claim government health benefits in on of the more evil things one will see; however, somehow be it this money $cam or the alleged mass shootings the pharmaceuticals seem to sail by untouched. Must be because $o many people have pre$criptions.

After public outrage over these cases, two blue-ribbon panels proposed a raft of reforms aimed at giving the agency a fresh start.

Oh wow! Fitchburg!

Among those was a name change from the Department of Social Services to the Department of Children and Families.

A turd, by any other name.... sigh (cough).

Lawmakers also approved, among other things, about $1 million in state funding for a beefed-up Health and Medical Services Team at the agency. A key component was hiring a physician medical director. Although that position was initially conceived to be part time at roughly $75,000 a year, the job came with high expectations, including setting up a comprehensive system to provide high-quality medical advice from both in-house and outside experts....

Plus pension, plus health benefits.

Yet in an interview earlier this fall, Jan Nisenbaum, who was then the deputy commissioner overseeing the medical team, said she saw no need to bring a physician medical director on staff because the agency could continue to turn to specialists for free consultations on a case-by-case basis....

Then the nothing law the legislature passed wasn't needed? Just doing, like they so often do, a wheel-spinner so we will all say they are doing something, solving the problem, and justifying their do-nothing jobs!

--more--"

Maybe an early Xmas present from Stata?

"No release for Conn. teen caught in hospital dispute" by Neil Swidey and Patricia Wen |  Globe Staff, December 21, 2013

At 11:37 a.m., a loud outburst came from inside Courtroom 6. Justina Pelletier’s father then appeared at the door and yelled “Evil!” into the crowded hallway. A few minutes later, her mother emerged, sobbing, “I don’t understand how they can do this. I didn’t do anything wrong.”

Linda and Lou Pelletier of West Hartford, Conn., went into juvenile court in Boston on Friday hoping a judge would return custody of their 15-year-old daughter to them. Justina’s life has been in limbo for more than 10 months, as the teenager has remained in state custody at Boston Children’s Hospital, mostly in a locked psychiatric ward, while her parents, doctors, and lawyers fought over her future.

Instead, Judge Joseph Johnston ruled the state should maintain custody of Justina, at least for now. He did, however, say he would appoint a court investigator to take a fresh look at the case, and he signaled a willingness to explore returning Justina to her home as long as Connecticut authorities closely monitor her care, according to two sources who were briefed on the decision at the closed hearing. The judge, who also continued his gag order on all parties to the case, set the next hearing for Jan. 10.

The family’s saga sprang from a diagnostic dispute between Justina’s doctors at Tufts Medical Center and at Children’s over whether the child’s deteriorating condition was primarily a physical or a psychiatric problem.

The focus of the case swiftly turned to a controversial concept called “medical child abuse,” which is being increasingly applied to parents suspected of interfering with their child’s medical care or pushing for unnecessary and even harmful treatments.

If you don't agree with a quack doctor, and there are plenty out there, then their word is better than a presumedly loving parent.

The case shows the profound challenges all the parties face in sorting out the truth behind medical child abuse allegations, and how raw the emotions can get when parents’ right to determine their child’s medical care clashes with the state’s responsibility to protect children from harm....

If that is the state's responsibility they did a piss-poor job of it in Fitchburg (and now they are blaming the mother)? 

As for sorting out the truth, you aren't going to find that out of the state or in the mouthpiece media.

--more--"

"More immediately, however, the state Department of Children and Families must expand its medical expertise, which is severely lacking....

Seems obvious, right?

--more--"

RelatedHis life saved, man reaches out to troopers

I guess they made out better than Fitchburg.

"State promoted social worker before firing her; Performance hailed until missing-child case came to light; agency ousts 3d staff member" y Michael Levenson |  Globe Staff, December 31, 2013

Three weeks before a social worker was fired for grossly mishandling the case of a 5-year-old Fitchburg boy now feared dead, state officials promoted her, citing what it called her commendable job performance.

The social worker was promoted Nov. 27 and received a 5 percent bump in pay, said the state Department of Children and Families. 

Looks like a rubber stamp thing.

DCF fired her Dec. 16, shortly after learning that Jeremiah Oliver had not been seen since September, saying the social worker had failed to properly monitor the boy’s troubled family.

Officials said the social worker’s promotion had been part of “merit-based” promotions given to 239 social workers in the agency statewide.

All rubber-stamped, no doubt!

The social worker “met the criteria for this promotion, as confirmed by her manager, who has now been terminated,” for her failures in the handling of Jeremiah’s case, said Cayenne Isaksen, a DCF spokeswoman.

DCF officials acknowledged the promotion Monday when asked about it by the Globe.

Oh, they weren't going to tell anyone, huh? 

Earlier in the day, the agency had announced the firing of an area program manager, who became the third DCF staffer to lose a job in the Oliver case, joining the social worker and her supervisor fired two weeks ago. None has been identified by name....

That the last of the sacrificial lambs?

--more--"

Also see: 

Slow Saturday Special: Patrick's Political Ma$hine
Father of missing Fitchburg boy admits checkered past
Family, community search again for missing Fitchburg boy
Vigils continue for missing Fitchburg boy
Sometimes, the system works

So says Weiss's wisdom

UPDATE: Death of 6-month-old investigated

The Massachusetts Department of Children and Families acknowledged Monday evening that its staff had previously been in contact with the boy’s family, but that was buried at the bottom righthand corner of page B13 and is not drawing as much attention.