Justina Pelletier and the Need to Re-Calibrate Power

PERSONHOOD USA HANDWRITING

When the ambulance finally made it to Longwood Avenue and pulled into the driveway of one of the nation’s top pediatric hospitals, the mother thought, “I’m saved.” Her relief wouldn’t last long.

Neil Swidey and Patricia Wen, Boston Globe: A medical collision with a child in the middle

I’ve been intending for awhile now to write about the Justina Pelletier case, but I’ve had too many things on my plate.

This morning I ran across a post by streiff on RedState, Justina Pelletier And The Rule Of The Little Eichmanns:

In February 2013, Linda and Lou Pelletier brought their daughter, Justina, to Boston Children’s Hospital. She was unable to walk, but, as it has turned out that was the least of her problems.

Justina had been treated for some years by a specialist for mitochondrial disease, but wasotherwise normal.

For years Justina had been diagnosed mitochondrial disease, a relatively newly discovered disease, causing muscle pain and weakness.

But her condition was made worse when she caught the flu in February.

So at the recommendation of her doctor at Tufts Medical Center, Mark Korson, she was admitted to Boston Children’s Hospital to see her gastro-intestinal specialist, Dr. Alex Flores, who had transferred from Tufts to BCH.

When she arrived a Boston Children’s a new set of doctors made a completely different diagnosis. They concluded that Justina was suffering from a psychiatric disorder. Needless to say, the parents were underwhelmed by that opinion and attempted to remove their daughter from the hospital.

This is where the caring medical professionals of Boston Children’s stepped in and had the parents charged with child abuse.

Reading this made the urgency return.

Dealing with Dueling Diagnoses

I’m not going to rehash the plotline. I think the best reporting so far is being done by Neil Swidey and Patricia Wen for the Boston Globe (linked in the opening quote, above).

And I’m not going to add to the (legitimate) anger and scorn being directed at medical/social worker tyranny.

The key, as I see it, is a critical irony:

Two contradictory and equally murky, hard-to-prove hypotheses on what exactly is wrong with this child and therefore the most appropriate way to treat her.

Either can be deadly if it turns out they’re wrong.

From the Boston Globe story:

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. 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.

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.

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. 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 it is.

How do you decide which of two conflicting—and equally unprovable diagnoses—to go with?

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

“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.

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.

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.

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.

Mannie Taimuty-Loomis, a mother who lost custody of three of her children for nearly nine months in a disputed mitochondrial case in Pennsylvania but was ultimately cleared of wrongdoing, felt this isolation. She compares how some hospital staffers treat mothers like her to the refrain from a Lee Ann Womack country music song: “I really hate her, I’ll think of a reason later.”

The value of square one

When I was the prepress guy at a print shop one of my responsibilities was to re-calibrate a high-end color copier twice a day.

The second day of my new routine, the copies were getting worse by the minute, so I called the copier help line.

The guy on the phone patiently described the procedure, whose initial step was something I’d left out of my routine.

Starting over.

Before you calibrate, you reset everything to the defaults. THEN you calibrate. Otherwise you make a hash of it, re-calibrating calibrations from yesterday.

You have to restore the baseline.

And that is what Children’s Hospital failed—no, refused—to do.

As tensions with Justina’s parents were rising, Newton reached out to Korson at Tufts, though not for his views on Justina’s medical care. Her call was primarily to tell Korson that Children’s had begun investigating the Pelletiers for possible medical child abuse. The only other contact with Korson had come Monday, when a Children’s neurology resident called him for a quick summary of his treatment of Justina.

Although inherent in these cases is the suggestion that doctors like Korson were giving care that a child shouldn’t be getting, Newton, like many in her field, generally saw the physicians as innocent victims who were misled by remarkably persistent and deceptive parents — almost always mothers.

Korson counseled caution. By its very nature, he stressed to Newton, mitochondrial disease can be a “setup” for accusations. (Korson and Newton both declined to speak specifically about Justina’s case, but records and correspondence obtained by the Globe describe their thinking.)

But Children’s wasn’t interested in his perspective, so they ignored his caution.

Brian Palmer, writing in Slate, offers a word of caution to those of us growing incensed reading the Boston Globe story:

It’s easy to get angry about this scenario—and there are some troubling things about the way the conflict has been managed—but the doctors at Boston Children’s deserve a defense. First, we’re essentially hearing only one side of the Justina Pelletier story. Neil Swidey and Patricia Wen, the reporters covering the story for the Boston Globe, have done an admirable reporting job, but hospitals can’t say much about their patients. Linda and Lou Pelletier appear to have provided much of Wen and Swidey’s information. Second, the science is complicated. Mitochondrial disease (Justina Pelletier’s original diagnosis) and medical child abuse (the Boston Children’s diagnosis) can look extremely similar. Both can be deadly if not treated properly.

Further along, Palmer continues with a defense of Children’s I find wanting:

Mark Korson, the Tufts doctor who diagnosed Justina Pelletier with mitochondrial disorder, has criticized the doctors at Boston Children’s on several grounds. First, he argues that there are no objective tests for the diagnosis they have made, which represents nothing more than a “best guess.” True enough, but Boston Children’s could lob a similar accusation back at him, especially considering he apparently declined to use one of the few diagnostic tests available for mitochondrial disease.

I’m sorry, but a diagnostic tie shouldn’t go to the team that makes its decision in the first three days of knowing a child when there’s a qualified team that’s been working with that child over many months. So, no.

As for the remark about Dr. Korson “apparently” declining “to use one of the few diagnostic tests available for mitochondrial disease,” the Globe article, to which Palmer was responding, explained that.

Although he had given Justina a “working” diagnosis of mito, he acknowledged he couldn’t be 100 percent sure. But he was certain of this much: Justina had chronic, serious symptoms that left her drained and were suggestive of mito, particularly her pattern of losing stamina as the day and week wore on, which her teachers had noted. Her older sister’s muscle biopsy had also suggested mito, which can run in families. And Justina had received the rare cecostomy surgery only after a sensitive, two-hour-long test measuring how effectively her colon pushed out waste had provided objective evidence that her colon was seriously impaired.

The tells

To me there’s a sad and frustrating irony to the Children’s staff finding parental abuse tells in the behavior of the parents.

Even though they were piling up their own tells in every encounter.

One piece of evidence the staff offered was Mrs. Pelletier’s insistence that the staff insert a feeding tube. Which they finally did. After the state had taken custody.

For instance, early on the staff had been suspicious of Linda’s demand that her daughter get a temporary feeding tube in order to increase her nourishment. But immediately after the parents lost custody, the report noted, Children’s had determined that the feeding tube was indeed medically necessary and Justina was given one.

Another was the cecostomy, the “button” near her “belly button through which a solution could regularly be passed to force the colon to contract and flush her system.” Even though, as the block quote above makes clear, the procedure followed a “two-hour-long test measuring how effectively her colon pushed out waste had provided objective evidence that her colon was seriously impaired.”

Ignoring contrary evidence is a tell for a rigged system.

Like this (emphasis mine):

In February, the morning after the Valentine’s Day drama when the state had taken emergency custody of Justina at the request of Children’s, the Pelletiers, had appeared in juvenile court to ask for their daughter back. One of the key pieces of evidence presented to Juvenile Court Judge Joseph Johnston had been an affidavit filed by a state social worker, following her interviews with all the major parties.

The affidavit showed considerable deference to Children’s. It quoted liberally from hospital records and interviews with staff members there, including accusations that Justina’s parents were obstructing her care. It said the Children’s doctors “do not know where the parents picked up the current diagnosis and they are hard to disprove.” It included negative comments from Justina’s Connecticut pediatrician about how Linda and Lou had “fired” multiple doctors and “encouraged” the diagnosis of multiple medical problems.

However, the affidavit failed to mention that the social worker had interviewed Korson, and that Korson had explained the origins of the working diagnosis of mitochondrial disease that he had given Justina. Internal state records show that Korson had explained that the disorder sometimes runs in families and that he had also been treating Justina’s older sister for it.

Leaving out evidence you have in your possession is a damning tell, demonstrating actual malice.

Enough that any competent state agency would have decisively removed such a party from the conflict.

And started over.

There’s even more, but you get the point.

The arrogance of power controlling the powerful is a given.

When will we ever learn to take that arrogance seriously and take appropriate steps to counter the lust of the powerful for control over people’s lives?

 

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