Pelletier Opinion Pieces: Best and Worst

In addition to the news articles on the Justina Pelletier case there have been some interesting opinion pieces written.  I will discuss the worst and best pieces I found in this post

The Worst

“The Blaze,” is the offender for the worst opinion piece: “What We Found in a Boston Children’s Hospital Policy Manual About Research on ‘Wards of the State’”

The article talks about a policy at Boston Children’s Hospital (BCH) allowing wards of the state to be enrolled in clinical research under certain circumstances.  The BCH policy is as follows:

“Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit (46.406 (50.53) or 46.407 ( 50.54) only if the [institutional review board] determines and documents that such research is

Related to their status as wards; or

Conducted in schools, camps, hospital, institutions, or similar settings in which the majority of children involved as participants are not wards.”

I have worked in clinical research for several years, currently work in pediatric clinical research, and have my Masters degree in Research Ethics, so I can tell you without a doubt that this policy is normal.  It follows the federal regulations for research involving minors, and is standard for institutions participating in pediatric clinical research. 

The article above insinuates that this policy allows BCH to use wards of the state as guinea pigs for their research when in fact it mandates additional restrictions to prevent this from happening.  In the end, we don’t even know if Justina has been enrolled in any clinical trials at BCH, so the whole issue is moot and this article pretty pointless.  I am usually impressed with the reporting of The Blaze, but was extremely disappointed with the sensationalized nature of this story.

When this kind of misinformation is spread, it creates an unnecessary fear of clinical research by patients and families.  The clinical research world has worked very hard for many years to make trials as safe as possible and we constantly reevaluate the regulations to make sure we are protecting participants in the right way.  Clinical research is vital to medical advancement and to see it turned into a way of inciting fear makes me very angry.

The Best

The best opinion piece I found was an article by Lauren Stiller Rikleen: “A Cautionary Tale: How Unconscious Biases Can Deliver Flawed Medical Judgments”

The Pelletier family was told that one of the reasons the Massachusetts Department of Children and Families (DCF) was called is because they were being too difficult about their daughter’s treatment.  The article above advises physicians to use caution when judging a family’s reaction in medical situations, and not to bring social services into the picture too quickly. 

It is entirely normal for parents of a chronically sick child to be emotional when their child is at the hospital, also these parents care for the child day after day and are usually well versed in their child’s medical needs.  It can be frustrating for these parents to explain their child’s needs over and over to different physicians, knowing what the child needs, but having to navigate another medical institution to get it.  This stress makes some families difficult to deal with as a hospital staff member, but this in no way means they are unfit parents or that their child is better off as a ward of the state. 

The author also has a child under the care of Dr. Korson, Justina’s Tufts physician, so this brings an added element of insight to her perspective on this case.  The article was very well thought out and very well written.

The Pelletier Family v. Boston Children’s Hospital: The Battle Continues

Last month I wrote an article about Justina Pelletier.  Justina is a 15 year old girl diagnosed with Mitochondrial Disease at Tuft’s hospital, if you are unfamiliar with her story to this point please read last month’s article, Hospital vs. Parent.

Over the past week this story has exploded.  Lou Pelletier, Justina’s father, broke the gag order placed by the court and has been speaking to the media.  Last week marked the one year point in the Pelletier Family’s battle with the Massachusetts Department of Children and Families, DCF, and Boston Children’s Hospital, BCH.

I have watched Mr. Pelletier in the two major interviews he did this past week: The Glenn Beck Program and  The Kelly Files,

In my opinion, Mr. Pelletier is amazingly calm and collected for a father in his position.  In each interview he tells his side of the story, a few of the points he makes are below:

-          He is breaking his silence (and defying the gag order) because he believes that Justina’s life is in danger because of the treatment she has received at Boston Children’s Hospital

-          In January of 2013 Justina was ice skating and living the life of a normal teen, now she is confined to a wheelchair and states that she is in constant pain.

-          The specialist the family went to BCH to see was physically removed from her room when he attempted to see the patient.

-          All medical procedures performed on Justina by Tufts Hospital were deemed necessary by physicians and were covered by insurance.  He also gives examples of the procedures and presents proof of why they were medically relevant.

-          The Pelletier Family feels that the treatment Justina received at BCH is mentally and physically abusive to their daughter.  Examples are:

o   Psychologists asking her why she allowed doctors to perform past medical procedures on her when they were unnecessary.

o   Justina has difficulty with bowel movements, some of her previous medical treatments were to resolve this problem.  According to Mr. Pelletier, Justina has been forced to sit on the toilet for hours at a time and has been told that her toileting issues are in her head and that she will sit on the toilet until she has a bowel movement.

-          Justina has been moved to another facility in Massachusetts that specializes in psychological issues and will not accept patients with medical conditions.  Mr. Pelletier states that the first time he saw Justina at the new facility she was brought outside in 18 degree weather with a wet head, each subsequent time she has had dirty, greasy, matted hair.  He does not believe his daughter is getting care she needs or the treatment she deserves at this facility.

As emotional a reaction as this information immediately stirs in us, we must keep in mind that all stories have two sides.  The frustrating thing about this tale is that the other side, BCH and DCF, are unable/unwilling to give any pertinent information.  The statement released by Boston Children’s Hospital is as follows:

“We are proud of their work and positive impact on the patient.  [O]ur clinicians are particularly distressed that the inaccuracies surrounding this case have caused undo concern for the many children and their families with mitochondrial disorders in our care. Misleading reports suggesting that the hospital holds patients in its inpatient psychiatric unit do not recognize the role of DCF as the legal guardian or the challenges inherent in finding appropriate lower acuity facilities for certain patients.” (source)

As expected and appropriately for the hospital, BCH is defending its physicians and shifting responsibility to Massachusetts DCF.

The interviews with Mr. Pelletier have been decent, but I feel the reporting has missed some major questions:

-          What is standard protocol for cases of alleged medical child abuse?  Are gag orders typically placed by the court in these cases?

-          What about the other families who have recently spoken up about similar experiences with BCH?  What are their stories?  Does BCH have a higher than normal number of cases reported to DCF than other pediatric hospitals?

-          It has been reported that BCH is the “go to” hospital for Massachusetts DCF when they have medical cases.  Is there a third party to review cases that involve BCH physicians?  What is the hospital that is called?  Did they review Justina’s case?  Has everyone involved been vetted for relevant conflicts of interest?

-          Why have the opinions of Justina’s physicians from Tufts not been treated with the same deference as the opinions of the BCH physicians?

Because the information is so limited in this case, I certainly don’t profess to have the right answer.  However, one glaring question cannot be ignored:

If BCH is correct in their new diagnosis, and their new treatment path is working, why, after a year on this new plan, have we seen Justina’s condition decline instead of improve?

Something feels wrong here, and for the safety of this little girl I think we need to figure out what that is and make it right.

Lab Results: Direct to Consumer

A law was passed recently to allow patients to get lab results directly from the lab, removing the physician from the equation.

Statistics say that up to 7% of abnormal lab values are never called to patients by their physician.  The new direct from lab to patient rule aims to solve this problem.  However, in solving that problem does it create another potentially larger issue?

A large percentage of the population is unfamiliar with medical terminology and/or is not well versed in interpreting lab results.  Though I think that some people would be fine reading the results and looking up unknowns on Google, many could be put at risk without having a doctor or nurse immediately available to interpret the results for them.

I see two main issues with a lab releasing results directly to patients. 

1)      Abnormal lab values that are not clinically significant may cause patients unnecessary concern.  Sometimes abnormal values are not an indication of a bigger problem, but if you are not familiar with the world of medicine the bright red number on the page signaling an value outside of the “normal” range may scare you unnecessarily.

2)      As stated above, one of the main reasons for this new rule is that 7% of abnormal results were not called to the patient by the physician.  I think this rule may create more of a problem with physician phone calls in the end?  It may give physicians who have trouble remembering to call their patients even less of a reason to follow through on checking labs.  This could end up leaving more patients without an interpretation from their physician.

Overall, I don’t have strong emotional feelings either way, but I do think there are some important things to consider with direct to consumer labs.  I would love to hear what you all have to say about this new law.  Please leave your thoughts and comments below.

Doctor Knows Best?

At one time or another we have all said something we regret.  For Christina Schumacher that “something” happened last summer.  Christina was in the midst of separating from her husband, claiming reasons of domestic abuse.  At the time, she told her sister that if anything ever happened to her children she would kill herself.  Christina and her husband had a 17 year old daughter and a 14 year old son.

On December 18th Christina’s estranged husband and their 14 year old son were found dead in an apartment.  Dad had strangled his son and then hung himself.

The next day Christina went to her regularly scheduled appointment with her psychologist.  Her doctor had decided, before she arrived, that she should check herself into the hospital psych ward and had the police ready and waiting in case Christina disagreed. 

She didn’t agree, she wanted to be with her 17 year old daughter through their grief.  This however, was not an option and she was taken to Fletcher Allen Health Care where she remained for the next 5½ weeks.

Christina was released, by order of a judge, about a week ago.  The judge stated that he saw no legal reason she should have been committed or should remain in the hospital and ordered her immediate release.

Christina’s story raises some questions about the doctor/patient relationship in a mental health setting.  What rights do psych patients have?  How can we best assess their capability to make decisions?  What is the line where involuntary commitment becomes necessary?

I understand the concern the psychologist must have felt, and how difficult it must be to determine if a patient needs to be committed.  What if Christina had been unstable and harmed herself or her daughter?  I am sure the doctor felt there was enough information from their past meetings to warrant the decision of commitment.

However, we never really know how we will react to tragedy.  We often say things like: “I could NEVER do that.” Or “I would flip out if that were me.”  I am no stranger to this kind of thinking, before my dad ended up in the hospital last fall my internal monologue was: “I wouldn’t be calm talking about taking someone off of a ventilator…especially someone I loved…I would be a puddle…there wouldn’t be enough tissue in the world…”  Yet, there I was, in the exact situation I most feared, calm, collected, and making the tough decisions with tissue to spare.

What we say we will do and what we do are often worlds apart.  Christina’s psychologist would have been wise to keep this in mind during her appointment that December day.