Colonoscopy at the Royal Free Hospital was not “clinically justified”: £500,000 payout
14-year-old Jack Piper endured multiple organ failure, including kidney and liver problems, a a swollen brain and neurological problems, after a colonoscopy procedure at the Royal Free Hospital in 1998. He also developed epilepsy and suffered stomach ulcers. The December 9th Daily Mail reports that the procedure was not “”not clinically indicated or justified’”; his parents claim that the procedure was carried out to “establish links between his condition and bowel problems” rather than for Jack’s clinical needs. Jack’s family has won a £500,000 payout from the hospital, which “admitted the operation itself was negligent and gave Jack and his family a public apology.”
The documents also claimed that Jack’s parents were not warned of the risks of the procedure or the ‘controversial and uncertain’ link between autism and bowel conditions. This meant the surgery was performed ‘without lawful consent’ and was an ‘assault’ on Jack.
The Royal Free Hospital insists that staff had gone through all the pros and cons with Jack’s parents.
Jack’s bowel was perforated in more than 12 places during the surgery; he spent two weeks in intensive care afterwards at Great Ormond Street Hospital. The Royal Free Hospital is where Dr. Andrew Wakefield and Professor Simon Murch, now professor of paediatrics and child health at Warwick Medical School, carried out research on the MMR vaccine and autism between 1996-8. Prof. Murch suggested that the colonoscopy procedure be performed on Jack; along with Dr. Wakefield, Prof. Murch is under investigation by the General Medical Council “over allegations that he carried out invasive tests including colonoscopies on 11 other children contrary to their best clinical interests.” Prof. Murch denies these charges.
In 1998, Dr. Wakefield was quoted as saying that “anxiety” about the “MMR or other viral involvement” was grounds for “scoping these children as well.” He is now on the staff of Thoughtful House, which notes that “diagnostic endoscopy/colonoscopy” must be performed to determine if a child has “Autistic Enterocolitis.” Some children may and do indeed have gastrointestinal problems that warrant the performance of such an invasive endoscopy.” In the wake of what happened to Jack Piper, one hopes that parents are fully informed of the risks of such a procedure and the “‘controversial and uncertain’ link between autism and bowel conditions.”
One hopes.
13 opinions for Colonoscopy at the Royal Free Hospital was not “clinically justified”: £500,000 payout
Regan
Dec 9, 2007 at 8:07 am
So short version, human-subject research sans IRB, and full process of informed consent? Would it be fair to assume that the Drs. were also compensated for the services via private pay or national health plan?
Autismville
Dec 9, 2007 at 11:38 am
Just a thought…Maybe parents should be subjected to these procedures themselves prior to their children having them. Then they could truly make an informed, empathetic decision about how necessary it is.
theasman
Dec 9, 2007 at 1:24 pm
“Autistic Enterocolitis.” wtf??? If this doesnt prove wakefield should not be allowed to practice medicine, I dont know what will. This guy is inventing conditions with the word autistic.
http://en.wikipedia.org/wiki/Autistic_enterocolitis
M'sDad
Dec 9, 2007 at 1:29 pm
It makes perfect sense to me that the Piper family was compensated for the suffering caused by what was clearly a badly botched procedure. Harder to determine (indeed, the story Kristina quotes avoids taking sides, though there seems to be sympathy towards the parents’ claims) whether the parents *were* indeed informed of the risk/benefit equation and are claiming not to have been (or do not now recall that they were informed of the risks, having at the time been enamored of the idea of a “cure”, which may have been their reading of what was suggested as a possible benefit rather than the doctors’ explicit promise) or whether there was indeed malfeasance on the doctors’ part.
It seems to me that the hospital is compensating for a badly performed procedure rather than accepting the parents’ claims of “not clinically justified”… Kristina, perhaps the subject line of this entry is a little bit deceptive, since it appears to establish such a link?
Too bad that there isn’t a paper trail (for example, a document that the parents might have signed stating understanding of the risks); I suspect that the doctors have learned their lesson in that respect.
At any rate, while I understand that Wakefield is a lightning rod of sorts, Janus-faced depending on the web site one visits — either a life-saving hero or a cruel quack, with very little characterization in between — I’m not sure that this story really reflects on the practices of a medical center where he doesn’t actually *practice* medicine (he’s on the research staff of Thoughtful House, right?)…
Don’t mean to split hairs, but I think there are more compelling “guilt-by-association” arguments to be made.
Kristina Chew, PhD
Dec 9, 2007 at 2:02 pm
M’s Dad—–lots to think about. I am starting to think that “clinically justified”—-as parents continue to seek DAN! doctors and biomedical/alternative treatments—–may become a term as contested as “appropriate” education (as in FAPE).
Kristina Chew, PhD
Dec 9, 2007 at 2:23 pm
Orac at Respectful Insolence goes into more detail about colonoscopy:
Emily
Dec 9, 2007 at 7:21 pm
Ugh. Even a person who’s ever been on the receiving end of a colonoscopy knows that the primary risk is perforation. I can’t believe he didn’t inform the parents of this. And what kind of medical license did the person who did this procedure have? A certificate from an online hamster veterinarian program? Who the hell perforates an intestine TWELVE times?!?!? Quacks, charlatans, snake oil salesmen of the darkest water. Thoughtful House, my ass. Although apparently, one’s ass is no safer than one’s child or one’s mind around people like this. How much damage can a couple of “doctors” cause? I think we’re closing in on an answer with this pair.
Emily
Dec 9, 2007 at 7:26 pm
I note also that on the “Thoughtful House” (sic?) Website, regarding vaccines the folks in charge have this to say,
“In the meantime, it is the belief of Thoughtful House that parents have the right to be informed of the benefits and risks of all vaccinations, in order to make informed healthcare decisions with their child’s doctor.”
The fact that parents already are informed of these notwithstanding, apparently, this right does not apply to parents whose children have been recommended for unnecessary colonoscopies.
Regan
Dec 9, 2007 at 8:01 pm
I’ll go look at Orac’s post as well, but to me part of this also comes down to whether these guys were operating maverick research because they called it clinical practice vs. human subject research/experimentation?
The second requires prior review and approval, as well as various formal means of informed consent and review.
With the procedural botch-up poor Jack may have a severely diminished quality of life for the rest of his life. I hope that 500,000 pounds is enough.
Marla
Dec 10, 2007 at 12:44 am
I have never heard of autism Enterocolitis. That is just plain weird. Our daughter has always had some bowel trouble but I can’t imagine agreeing to such a thing. What would be the point? What would they be looking for? There are no real tests for this autism enterocolitis!? Unbelievable.
Another Voice
Dec 10, 2007 at 9:00 am
I agree with Emily - “snake oil salesmen of the darkest water”.
I wonder when the medical profession will adopt some degree of enforcement for their standards of medical practice.
M'sDad
Dec 13, 2007 at 12:35 am
For what it’s worth, in the context of linking Wakefield with this specific case, Wakefield’s response to the Daily Mail piece can be found here: http://www.thoughtfulhouse.com/pr/123106_newsres.htm - of course, it’s on the Thoughtful House web site, so if we have concluded that it is a den of snake oil salesmen, then Wakefield’s remarks about not having any connection to this case (which I suppose could be easily verified, whether in court or not) can have no veracity… :-)
Kristina Chew, PhD
Dec 13, 2007 at 12:58 am
Thank you for the link! Up to each of us to read and think.
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