ALS Walk and Roll 2014

As many of you know my father passed away from complications of his ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease) last October.  For the past three years my family has participated in the ALS of Michigan Walk and Roll.  We are participating again this year on September 28^th at Stoney Creek.

ALS of Michigan is a fantastic organization that aims to meet the immediate needs of ALS sufferers.  When my dad was living with ALS they let him borrow a scooter, wheelchair, ramps, arm chair, and shower chair as needed.  They have an extensive lending closet to meet the needs of pALS (people with ALS) in Michigan.  The organization also provides respite care to patients in need, filling a vital need for many ALS families.

ALS of Michigan has been a wonderful organization for my family, particularly with the support groups they sponsor for pALS and their caregivers.  I am asking you to please consider donating to this great cause, every little bit helps.  Please follow this link to donate:https://ssl.charityweb.net/alsofmichigan/walknroll/theresaspranger.htm

Thank you in advance for your support!

Chill Out: A Response to “Taking the Icy Plunge”

It’s not every day I have the opportunity to articulate a cogent argument against my brilliant former professor, so when it comes I just can’t pass it up.  Recently, in “Taking the Icy Plunge (or not)” Sean Philpott-Jones argued against the #ALSIceBucketChallenge.  For those of you unfamiliar with this challenge, it is a campaign to raise money for research and awareness of a devastating disease, Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease).  The idea is: one person posts a video of him/herself having a bucket of ice water poured over their head, they then challenge three friends to pour a bucket of ice water over their heads and/or donate $100 to an ALS charity.  The challenge has gone viral and has likely filled your facebook newsfeed as it has mine.

ALS is a devastating disease that slowly immobilizes its victims striking their muscles in any order: arms, legs, voice, diaphragm, any muscle can be affected.  People afflicted with the disease lose control of their muscles and at its climax are entombed in their own body, unable to move or talk, a condition referred to as “locked in syndrome.”  ALS claimed my dad last October, so my family has a very personal connection with this horrible disease.

In “Taking the Icy Plunge” the author argues that the #ALSIceBucketChallenge has two major flaws:

1.       The challenge does little to raise ALS awareness long term with videos containing little substance.

2.       In a fundraising campaign charitable donation should not play second fiddle while public humiliation takes the first chair.

Ok, so to the first point, certainly the videos aren’t classy, but (this year at least) they seem to be effective.  At this time last year the Ice Bucket Challenge had raised approximately $32,000 for ALS charities, this year $5.5 million has been raised.  Clearly, something is going right for them in 2014.  They are raising awareness of this disease and hopefully sparking an interest in people to search and learn more.  Awareness and education are very different, while the videos are hardly educational, I think the buzz they are generating is positive and could have lasting effects.  Putting more substance into the videos isn’t a bad plan however, and I would encourage anyone accepting a challenge to talk a bit about ALS, why it is important to support charities that help victims of the disease, and post a link to a specific charity with you video.

To the second point, I ask you to look at our society.  We are a culture of sound bites, flashmobs, and thoughts not exceeding 120 characters.  Anything (within the realm of moral of course) that gets people involved and inspired to donate to a good cause is a worthy endeavor.  It is difficult to inspire people to lighten their wallets these days, even for a good cause.  Wise challenge participants have been asking for those challenged to play as well as donate and those not challenged to consider making a donation.

On a personal note, the Ice Bucket Challenge has been a fun diversion for my family this year, as I mentioned above we lost my dad to ALS in October.  For the last 3 years around this time I would call Dad and ask “when are you going to start the walk donation page?”  You see, during Dad’s illness an organization called ALS of Michigan really helped my family.  They have equipment closets filled with tools for ALS patients to borrow and return.  When you have ALS you need a lot of expensive equipment and depending on your disease progression you can go from one piece of equipment to another quite quickly.  For instance, ALS patients can go from cane, to walker, to scooter, to wheelchair within the span of a few months. 

ALS of Michigan lends these tools to pALS (people with ALS) and they exchange or return them as necessary.  The wonderful workers at ALS of Michigan even helped my mom find and figure out a portable shower chair in 2012.  This chair allowed my dad to travel to New York for my Masters program graduation.  You can’t really put a price on that can you?

Each year ALS of Michigan hosts an event called the “Walk & Roll.”  It is their biggest fundraiser of the year and The Joyful Jaywalkers (my dad’s name was Jay…cute huh?) begin fundraising as a team at the beginning of August for the walk on the last Sunday of September.  This year the early days of August ticked by and my fingers ached to dial up Dad and ask “when are you going to start the walk donation page?”  Sadly, he isn’t there to answer and though we are all committed to fundraising this year, no one was very motivated to step into Dad’s place and start up our 2014 team.  The 2013 walk was two weeks before my dad passed away.  It was the last place many of our friends and extended family saw him alive and it will be the last of our “firsts without dad” in this horrible year of adjustment.  Starting the fundraising, whether or not we admitted it to each other or ourselves, was a daunting and emotional task.  Denial was the way we all chose to handle these emotions, until about 2 weeks ago.

This was when our friend Vince was challenged to dump ice water on himself and dedicated his video to my father’s memory, and it went from there, friends challenging friends: everyone talking about my dad, how great he was, how much they miss him, and asking for donations to fight ALS.  It may sound silly, but watching friends and family take an ice shower in honor of Dad really warmed my heart.  It was also the perfect catalyst for our campaign, my siblings all accepted when my brother was challenged, and decided to dedicate our video to all of the wonderful people we lost this year to ALS and those still fighting.  When your family is personally impacted you meet and grow to love many others with the disease, so the list was long.  My sister set up our team fundraising page and we told everyone about the walk in our video.

The challenge is certainly silly, but what are we Americans if not silly right?  And is there anything wrong with being silly for a good cause?

My hope is that this challenge will inspire people to learn more about ALS and support great organizations that help patients and families.  ALS of Michigan is one of those organizations, if you are inspired please click the link below and support the Joyful Jaywalkers in 2014.

https://ssl.charityweb.net/alsofmichigan/walknroll/theresaspranger.htm

Big Bad Ebola

Please click the link below to read my latest article on bringing Ebola to the United States and the use of the experimental Ebola antiserum.  This article has been written for The Bioethics Program.

http://thebioethicsprogram.wordpress.com/2014/08/12/big-bad-ebola/

Continuity of Care or a Culture of Kickbacks?

Recently, I did something I almost never do…I went to the doctor for a physical.  Yes, yes, I work in the medical world and know how important it is to have regular checkups, but unless/until it becomes necessary I steer clear of the doctor’s office.  Unfortunately, this past April going to the doctor became necessary…

You see, about a year ago I had to switch from my cushy PPO plan to a less-than-satisfying HMO plan.  With this switch I now have to play the referral game.  This wouldn’t be an issue except that my glasses were disintegrating before my eyes.  Therefore, it was imperative that I brave the primary care physician’s (PCP) office for an Ophthalmology referral.

To do this I needed to find a new PCP, so I picked Dr. Mary Murphy on a recommendation.  She saw me as a new patient and I let her know about the referral I was seeking, she said that since her computers were currently down I should call the office in a few days for the referral, but it shouldn’t be a problem. 

When I called the office a few days later, I was told that I would be unable to go to my Beaumont doctor because of the “continuity of care” policy at St. John Health System.  The conversation went something like this:

Referral specialist (RS) – “You must see a St. John’s affiliated physician for continuity of care.  For instance if you were to be admitted to the hospital by this doctor, you would not be admitted to a St. John’s facility and the medical records would not be in our computer system.”

Me – “If I were to be admitted to the hospital directly from my Ophthalmology follow up visit???  And just how likely is that, do you think?  Besides, I could have the records sent to your office.  I understand that you are concerned about your continuity of care, but how about mine?  This physician has been treating my vision issues for the past 20 years.  I have a complicated history with my eyes and am not willing to switch specialists.  Can Dr. Murphy make an exception in this case for my continuity of care?”

RS – “Ma’am this is a policy of your Blue Care Network (BCN) insurance.”

Me – “I don’t believe it is, I looked up my Ophthalmologist’s office and it is within the BCN network.”

RS – “Ma’am I suggest you call your insurance company.”

Needless to say I hung up and promptly called BCN.  They informed me their policy states that the physician chooses where the patient will be referred and that BCN has no involvement in this choice.  So, I called Dr. Murphy’s office back and clarified the BCN policy for them, since they seemed confused, the response I got was unpleasant at best.

RS – “Ma’am I never said that it was BCN’s policy.”

Me – “Yes actually you did, you just told me to call them.”

RS – “Dr. Murphy will not give you that referral, we suggest you find another PCP.”

I took their recommendation.  I usually try not to use this blog as a venting platform, but feel this policy claiming “continuity of care” as a reason to trap patients in a certain health system is patently bad for the health of the patient and something should be said.

I think you should seek care from the best available specialist for your disease or condition.  I don’t live a life tied to one health system, in my opinion it isn’t wise.  Even though a health system may be “best in the area” at one thing it won’t be best for everything.  And if you are sick, don’t you want the best?

When Dad was sick we went to all three of the area ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease) specialists, they were in three separate health systems and we were able to maintain “continuity of care” for his PCP just fine.  In fact, going to the different specialists allowed us to have a more complete view of Dad’s disease and explore all treatment options.

So, is the quest of St. John’s Health System really for “continuity of care” or is it ultimately a treasure hunt?  For each patient kept in the system St. John’s makes more money, so it seems to me they are more concerned with the good of their pocket book than the good of their patients.

I single out St John and Dr. Murphy because I had this experience with them, but I don’t think this is an isolated problem.  Savvy patients beware, lest you become trapped in a mediocre health care system when you have a serious illness.

Home at Last: Justina Pelletier Gets her Happy Ending

On Tuesday afternoon Lou Pelletier’s cell phone rang, it was his wife’s name on the caller ID, when he answered the voice he heard was his baby girl, Justina.  “Daddy, Daddy, I am coming home.”  The 16 month battle between the Pelletier family and the state of Massachusetts has finally come to an end.  On Wednesday, June 18^th Justina was transferred back to her family home in Connecticut and the case between her and the Massachusetts Department of Children and Families (MaDCF) was closed.

On May 30^th the Pelletier family and MaDCF filed motions to have Justina reunited with her family stating that all four requirements of the reunification plan had been met.  Since May 30^th the motion has been on the desk and at the mercy of Judge Johnston.  He approved the plan on June 17^th and Linda Pelletier, Justina’s mother, was able to take her home the next morning.

I believe this is in no small part due to the public outcry, phone calls to the Massachusetts powers-that-be, and extensive media coverage of this case.  Thank you to all of my readers who joined the fight for this little girl.

Her journey, in a sense, is just beginning.  She is confined to a wheelchair, it is unclear if she received adequate schooling during her time in the custody of MaDCF, and her forced separation from family will certainly leave scars.  Her family plans to find her appropriate physical therapy, assess her schooling needs, and start the journey to emotional healing.  They are under no delusion that their world will return to the normal they used to know, but are determined to help Justina heal and create a new normal for the family.

Lou Pelletier is overjoyed to have his daughter home and said his main focus at this time is her health and safety.  However, he plans, with the help of Liberty Counsel, to pursue legal action against MaDCF in the future. His goal is to ensure this never happens to another family and create a “Justina Law” to protect the families of children with rare diseases against flagrant charges of medical child abuse and secure parental rights in medical dispute cases.  A noble goal and I wish him well on his journey.

Thank you again to all of my devoted readers for helping get the word out about this case and indulging my obsession.  For the foreseeable future I think I am done writing about the Pelletier family.  I will however be watching as Liberty Counsel and Lou Pelletier pursue legal action against MaDCF.  Hopefully the next time the name Justina Pelletier appears on this blog it will be under the headline “Justina’s Law Takes Effect.”

A Less-Than-Sweet 16: The Justina Pelletier Saga Continues

Justina Pelletier turned 16 over Memorial Day weekend.  She was only 14 when the Massachusetts Department of Children and Families (MA DCF) took custody of her.  She has been hospitalized or institutionalized ever since.  Many of you will be aware that this is a story I have been following closely. If you are new to this tale and need further background on this family please see When Being Wrong is Unacceptable and When Doctors Disagree.

Earlier this month Justina Pelletier was transferred to a facility in Connecticut.  Though her parents still feel she should be home, they have said that this new facility seems to be taking better care of their daughter.  They are allowed more frequent visitation with her and are hopeful that she will soon be home.  Some friends were even allowed to visit and celebrate with her on her birthday. 

Even though these are positive developments, the case as a whole is still very concerning.

In March of this year "permanent" custody of Justina Pelletier was awarded to the state of Massachusetts.  Prior to this, Justina’s care was ordered back to her original physicians at Tufts.  Since this case is a diagnostic dispute between the physicians at Boston Children's Hospital (BCH) and Tufts, wouldn’t this transfer signify that the Tufts diagnosis of Mitochondrial Disorder was being upheld?  And, since the parents had been upheld on which doctors should treat their daughter, why did custody go to the state?  The logic in these decisions is not clear to me.

 Shortly after the custody ruling in March the judge's decision was leaked, trying to gain some additional perspective on the case I of course read it.  The full text can be found here.  My interpretation is as follows:

He made three main points:

1.       Disappointment that Connecticut Department of Children and Families (CT DCF) was unwilling to accept a transfer.

2.       Justina’s diagnosis

3.       Parental bad behavior

Let’s break down what Judge Johnston had to say about each of these issues.

First, the better part of his decision talked about his disappointment in CT DCF for refusing to accept a transfer of Justina.  He noted in his decision that CT DCF had investigated the Pelletiers and found that the home was an unsuitable environment for Justina (the Pelletier family claims the opposite).  Personally, I found the incessant mention of the CT DCF denial by Johnston to be (for lack of a better word) whiny to the point of ridiculousness and redundancy.  To be frank, I expect legal documents to be more professional and less petulant. 

However, all that being said, I don’t understand why Connecticut is refusing the transfer.  I assume it is to avoid media attention and responsibility.  If they were to accept her, she would be closer to home and if (as the Pelletier family states) CT DCF in fact found no problem with the home, why not accept the transfer and release her to the custody of her parents?

Regarding the diagnosis, Judge Johnston states that there is a large amount of psychological and medical evidence to prove that Justina suffers from Somatoform disorder.  However, as mentioned above, his order to transfer her care back to her original physicians at Tufts is contradictory to this statement.  The Tufts physicians diagnosed Justina with Mitochondrial Disorder and will certainly treat her in accordance with their diagnosis.

The last belabored point in the decision, was a discussion of the parents’ poor behavior.  Interestingly, everything noted as poor behavior and the reasoning for removal of custody happened after Justina was initially placed in state custody.  The document states that the Pelletiers were:

-          Verbally abusive to BCH staff

-          Approaching other families at BCH and telling them that the hospital was kidnapping children

-          Threatening institutions that were planning to accept Justina as a patient

-          Contacting the media

-          Changing their minds about accepting a transfer to CT DCF upon the advice of new legal counsel.

To me, much of this seems like behavior that is par for the course when someone has been unnecessarily stripped of their parental rights and are grasping at straws to have their child returned.  I don’t deny that the behavior is rude, but being rude is not a reason to lose your parental rights.

Consider these parents: their daughter has been taken by the state of Massachusetts, they are extraordinarily limited in when they visit her and what can be discussed, they see her health declining and can do absolutely nothing to help her.  How calm and pleasant would you be if it were your child?  

Mandatory Organ Donation: Ethical or Outrageous

Organ donation is the gift of life.  By donating organs after we die we can literally bring someone back from the brink.  Pretty awesome right?

So awesome in fact, that it could be argued, and has been, that everyone should want to donate their organs when they die, and consent for donation should be presumed.

What would this mean? Presumed consent for organ donation means that viable organs would be harvested from anyone who dies and consent from the patient or family would be unnecessary.  Every person would need to opt-out of the donation program rather than the current “opt-in” plan we have now.

As with everything in life there are pros and cons with an opt-out plan.  Let’s start with an obvious pro: with more available organs, more sick patients can get the transplant they need.  This is a definite good, but is it worth the cost.

One of the arguments I have heard for mandatory organ donation is: you don’t own your body once you die.  The assumption is that once I have died neither I, nor those who love me, have a vested interest in my body and until it is released to my family for funeral arrangements it in essence belongs to the government and my organs can be taken for donation without any ethical issue.

I adamantly disagree with the idea that I have no vested interest in my body once I have died.  My interest extends from the values I have lived during my life.  Furthermore, ownership and all decisions therein, should belong to my next of kin.  This ownership is crucial for many families.  For me, the final act I can perform for my loved one is ensuring the safe passage of their remains.  It is vital for me to have ownership of this task as part of my grieving process.  To remove personhood and its intrinsic value because life has left the body is illogical and disrespectful to the person as well as the loved ones they leave behind.

Another issue with presumed consent is that it expects an educated populous.  At this point in our society we need to recognize that this cannot be expected.  The vast majority of Americans live very uninformed lives for a variety of reasons.  If you don’t believe me watch some of Jimmy Kimmel’s Lie Witness News, they will make you cringe.

Finally, I think that making organ donation mandatory changes the psychology of the act.  Right now to donate you organs is altruistic and selfless.  If it becomes mandatory it changes the dynamic, instead of an altruistic giving of your organs, you become a renter of those organs until your death.  This may sound like a small thing, but changing this changes the way we view donors entirely.

In the end, organ donation saves lives, which is an important and wonderful thing.  However, making donation mandatory comes at a cost.  Are the lives saved worth possibly violating a person’s body?  Or upsetting their family? 

Treating everyone with respect and dignity is the most important thing we can do.  We should not place one patient at a higher priority while neglecting the other patient or their family.

As you have likely gathered I am strongly against mandatory organ donation.  That being said, organ donation is crucial and we should educate all citizens on the great gift they can give at the end of their life.  As we see with Lie Witness News, this will be an uphill battle, but if you agree with organ donation tell a friend and tell them to tell a friend.  With passionate advocates making the case to individuals we can raise the number of willing organ donors without compromising the donation process.

When Being Wrong is Unacceptable: More on the Department of Children and Families and Justina Pelletier

Alright, as many of you certainly know I have developed an addiction to the Justina Pelletier case.  I promise someday I will write on another topic, but today is not that day.  If you haven’t been privy to my latest obsession please see: When Doctor’s Disagree.

An opinion I hear for too often is that this is a “conservative” story, driven by “conservative” groups and media.  I don’t understand this claim, how is a story about parental rights only a conservative issue?  What if Boston Children’s Hospital (BCH) did overreach on this family, the Massachusetts Department of Children and Families (MA DCF) rubber stamped this case, and the court showed bias toward MA DCF in their decision, wouldn’t that be important to parents of all political beliefs? 

As I have said in every article about Justina, we need to remember that we are only seeing half of the story.  Because of this we do need to be a bit skeptical and cautious in forming an opinion.  Though, it seems that there is enough of a question to keep watching this story.  The best thing to do is investigate with an open mind and a calm nature.

There are two main opinions on DCF swirling around this case.  The first comes from those who side with BCH and believe that the hospital and MA DCF are justified and must certainly have evidence against the family that they are unable to share due to privacy laws.  This opinion is represented well here.  The article reminds us to not lose all faith in the medical community because of this story and that the vast majority of providers are appropriate at BCH, even if this story is true.   Pediatric providers have a deep love for their profession and a passion to help the children in their care.  Cases like Justina’s can make us lose sight of this and develop an irrational fear of pediatric medical professionals.   We must not allow our concern in this case to shape our judgment of all pediatric clinicians.

The second opinion is one that is very critical of child protection departments throughout the country.  An article explaining this case and the inadequacies of child protection services in general can be found here.  The author explains how child protective services employees often develop the idea that most parents will abuse their children and even a whisper of possible abuse should be acted on with the removal of the child. 

At this point I want to clarify a part of my opinion that I realize may not yet be clear.  Though I feel that there may have been overreach by the state of Massachusetts in Justina’s case, I do not believe the goal of MA DCF, BCH, or their employees has been to harm this girl.  I believe every person in this case is working for what he/she feels is in Justina Pelletier’s best interest. 

I work in pediatrics currently and frequently disagree with choices parents make for their children, but my respect for the institution of parenthood reminds me that people are entitled to make choices for their children that I consider wrong.  It is only in the direst of circumstances that anyone is entitled to intervene.  It is not always easy, but I remember that my view is merely a snapshot and that parents have the right to raise their children as they see fit.  Even if their home isn’t perfect (keep in mind that no home is), we must consider the harm done by removal versus the harm (or potential harm) done in the home.

Unfortunately, it doesn’t appear that this evaluation is always done appropriately.  The reality is that there is always harm done to a child when removed from their parent’s custody.  Sometimes, it is warranted, but should be a last resort because of the psychological turmoil removal has on the child.  When removing parental custody, it is absolutely and ALWAYS unacceptable for DCF to be wrong! 

Anyone who works for child protective services should work under a constant fear of being wrong, as deeply as or even more deeply than the medical community fears mistakes.  The responsibility given to those who work for DCF is intense and workers should feel the weight of that responsibility.  It is unacceptable for these agencies to become reactionary, ie remove a child too quickly and find proof for the removal later.  I am not saying that this happened here, though we must admit it as a possibility.  I am trying to make the broader point that DCF should be under the strictest regulation, and that the burden of proof should be on their side for removal of a child.  The bar should be set high, weighted always on leaving the child with their natural family unless serious and imminent harm is certain.

Since we have said that a harm comparison should be done, let’s use the information we have in the Justina Pelletier case to compare her life with Mom and Dad vs. her life in DCF care:

Life with Mom and Dad

-          Participated in social activities (figure skating)

-          Attended and enjoyed school

-          Frequent medical appointments (possibly unnecessary)

-          Frequent medical procedures (possibly unnecessary)

-          Many medications (possibly unnecessary)

-          Family structure intact

Life in MA DCF Care

-          Over a year in institutions

-          No schooling (alleged by the family)

-          Deterioration of overall health and physical appearance (assessed by pictures and family report)

-          Less medical procedures (that were possibly unnecessary)

-          Fewer medications (that were possibly unnecessary)

-          Family unit and child’s normal support system fractured

It has also been alleged that Justina has not been allowed to participate in elements of her faith that are important to her.  If the parents are medically abusing their daughter this certainly needs to be dealt with, but to add intellectual, emotional, physical, and psychological harm to this child under DCF care is not the way to handle it. 

Remember that there are respected physicians who have cared for this child for years and feel she has Mitochondrial Disease and that the family has appropriately dealt with this diagnosis.  This case is not cut and dry, one respected physician’s opinion is in direct opposition to another and a child’s care and wellbeing hangs in the balance. 

I have said it before and will say it again: It is unacceptable to be wrong.  In any DCF case there should be a harm analysis and abuse, willingly or unwillingly inflicted by the government agency on the child needs to be addressed and appropriately handled.  It does no good to move a child from a potentially harmful environment into a definitely harmful one.

When Doctor’s Disagree

What happens when doctors disagree on a pediatric diagnosis?  What are the parents’ rights in a diagnosis dispute?  Do they have any?

Many of my faithful readers will be familiar with the story of Justina Pelletier.  I have been following the case of this 15 year old girl for several months.  For new readers I will give a quick recap here:

Justina is a 15 year old Connecticut girl, she had been diagnosed with Mitochondrial Disease at Tuft’s Medical Center by Dr. Mark Korson.  In February of 2013 Justina developed the flu, Dr. Korson suggested that the family take Justina to Boston Children’s Hospital (BCH) to see her gastroenterologist who had recently moved to BCH.

When the family arrived at BCH they were told they would not be allowed to see the gastroenterologist, the staff at BCH quickly changed Justina’s diagnosis from Mitochondrial Disease to Somatoform Disorder, a psychological condition that manifests in physical symptoms.  They stopped all of her medications and moved her to the psychiatric ward of the hospital.  When the parents objected and said they were going to return their daughter to her doctors at Tufts the hospital made allegations of medical child abuse and the Massachusetts Department of Children and Families (DCF) took temporary custody of Justina.  The parents have been fighting to regain custody ever since.

The theme of the many, many court dates has been postponement, but a decision was finally made last week.  Judge Johnston granted “permanent” custody to DCF.  This ruling cannot be reviewed by the court for 6 months, the judge backdated the decision to December, so the family’s next court date is May 25^th, 2014.

In January, Justina was moved to a non-medical psychiatric facility.  The average stay at this facility is 2 weeks or less, she has now been there over 2 months.  Her family feels that this is a dangerous environment for Justina.  According to her father, Lou Pelletier, before developing the flu last year his daughter was a typical active teenager, she handled her chronic illness well and enjoyed activities such as figure skating.  By the time she was moved to this non-medical facility in January 2014, she was confined to a wheelchair barely able to walk.

The family’s position is that Boston Children’s Hospital and Massachusetts DCF have kidnapped their daughter and are neglecting her medical needs to a point that her life is in imminent danger.

Lou Pelletier has been on a media campaign to raise awareness of his daughter's condition and situation.  The family’s last big media appearance was on the Dr. Phil show about two weeks ago.  The episode was well done and featured opinions from many experts on custody battles.  The overarching theme was that any custody case involving the state should focus on creating a safe environment at home so the child could return to the family.  This is done through investigation of the home and family life, counseling, education, etc. basically whatever is necessary to reunite the child with his/her family.  According to the Pelletier family no investigation has been done and they do not feel that Massachusetts DCF has any intention of working to return custody of their daughter.

The trouble with this story is that we only have the Pelletier family’s side, DCF has remained extremely tight lipped, making very few statements regarding the case, none that have been particularly informative or helpful.  From all appearances the family is calm, together, medically literate, and rational.  I recognize that their side of the story is certainly biased and we must keep that in mind, however with the silence from DCF, lack of criminal charges toward the parents, and drastic difference in this girl through photos from this year and last, the family’s story appears to be credible.

A few weeks ago Judge Johnston ruled that Justina’s medical care be transferred from Boston’s Children’s Hospital back to Tufts.  This was considered a win for Justina’s family, and the parent’s called to help facilitate Justina’s appointment with Dr. Korson.  Massachusetts DCF refused to take Justina to Tufts prior to this most recent decision, it remains to be seen what they will do now that they have been granted custody.

One of the things I fail to understand in this case is how BCH could override the diagnosis from Tufts and because they make a new diagnosis have grounds to remove this child from the custody of her parents.  What are a parent’s rights in healthcare situations?  Do they have the right to decide: who treats their child, which doctors to trust, or whether to seek a second opinion? 

A key player in the new diagnosis of Somatoform Disorder was Simona Bujoreanu PhD.  Somatoform Disorder takes a very long time to diagnose, before a diagnosis can be confirmed, the physician must rule out any possible medical cause.  Physicians at Boston Children’s Hospital allegedly diagnosed Justina with Somatoform disorder in just 12 hours.

 I think it is important to focus on Dr. Bujoreanu because of an article she wrote a few years ago.  The article is titled: “Approach to Psychosomatic Illness in Adolescents.”  Dr. Bujoreanu claims in this article that “20-50% of all patients complaining of physical symptoms can be categorized as having medically unexplained symptoms.”  As the article goes on she seems to claim that psychosomatic diagnoses are a catch-all for these patients with symptoms that cannot be immediately medically explained.  She makes broad strokes about what can be considered psychosomatic and does not focus on how time consuming a diagnosis like this should be.  She talked about how families may react badly to a psychosomatic diagnosis, but did not stress how careful a psychologist should be in making the diagnosis. 

In Justina’s case her physical symptoms had been explained by a diagnosis of Mitochondrial Disorder, the doctors at Boston Children’s Hospital simply rejected this diagnosis.  I think doctors need to be extremely careful when countering the diagnosis of another physician and if the new diagnosis is psychosomatic even more time and evidence will be needed.

The decision of the judge this week was very disappointing.  The family has been investigated by Connecticut Department of Children and Families and nothing was found.  Connecticut Department of Children and Families has repeatedly turned down a transfer of Justina to their custody, presumably because they have previously cleared this family.  I also feel very strongly that before a child is placed in “permanent” foster care against the express wishes of the family, some sort of criminal charges should need to be filed against the parents.  I am frankly appalled that something like this could happen in America.

Parents should be allowed to disagree with a diagnosis and to have their child treated by the medical professional of their choice.  If the child is in danger of abuse or neglect by a family member criminal charges should be filed along with the request for custody by the hospital or state.  I am a very strong advocate for parental rights, and believe that excepting extreme cases custody of and decisions for children should remain with the parents.  Parents need to have defined rights in medical situations, perhaps this case can motivate us to more plainly secure parental rights when a child is ill.  I have said it before, but will stress it again, I am shocked and saddened that removal of a child from her family like this does not have to be associated with criminal charges against the parents.

I have so much to say about this case and I am sure I have not typed my last on this story.  I was glad to hear that the family plans to continue the fight at the appellate court level.  I will be following this closely as it develops, I hope you will as well.  More to come…

Barbie Dream Body

 When you were a kid did you ever want to look like Barbie?  No?  Me neither…her breasts were too big and her waist too small.  I always figured she would break in half in real life, or at least have chronic back pain.

Blondie Bennett though, has always dreamed of becoming a real life Barbie doll.  She says that she was obsessed with Barbie as a kid and has modeled her life after the doll.

photo credit: <a href="http://www.flickr.com/photos/dollobserver/5499591092/">The Doll Observer</a> via <a href="http://photopin.com">photopin</a> <a href="http://creativecommons.org/licenses/by-nc-nd/2.0/">cc</a>

Now 38, she has had five breast enhancement surgeries and at this point makes Dolly Parton look “natural”.  She also has regular Botox injections and lip fillers to make her appear plastic and doll like.  Believing that “natural is boring,” she has gone to extremes to make herself into a living doll.

The most extreme of her actions is to participate in hypnotherapy sessions multiple times a week.  The goal of this hypnotherapy is to lower her IQ.  Her ultimate desire is not only to resemble Barbie in looks, but also to become brainless like the doll as well.  To hear Blondie in her own words, please watch this video.

In my humble opinion, it appears that this desire to become Barbie even to the point of brainlessness masks a deep psychological pain in this woman.  To purposefully work to forget your life and become ignorant of the world seems to me a red flag to deeper issues. 

However, we aren’t here to judge or fix this woman.  I chose to write about her story for two reasons: 1, I found it fascinating and 2, I think it is an interesting way to highlight an important issue in our country.  The current trend in laws and policies makes us increasingly financially responsible for and beholden to one another.

Take the healthcare law for instance.  With health insurance being subsidized by tax payers, we have a financial interest in our fellow citizens staying healthy.  Right now Blondie’s rent is paid by a “special guy” and some of her procedures funded by other gentlemen in her life.  I presume that one day, as she ages, these gravy trains will cease to run.  Where then will her money come from?  What if she suffers back problems from the weight of her super enhanced bosom?  What if her treatments to become brainless work so well that she is unable to enter the workforce or even care for herself because of her forgetfulness?  Since she chose to put herself in that position, should American tax payers foot the bill for her future care?

If the answer is yes, doesn’t that give us a vested interest in her behavior now?  We see this idea play out in campaigns against: smoking, drinking in excess, eating junk food, not exercising, using recreational drugs, etc.  I am not saying that we should encourage these behaviors by any means, but since we are now financially tied together through healthcare, whether or not people stop the high risk behavior has a direct effect on the wallet of every tax payer.

Blondie Bennett may have a contingency plan for her future and continue to live a self-sufficient life.  However, her eccentric life choices are an interesting case study for how involved we should be in the choices of others when the future cost of those choices could fall on our shoulders.  Whether or not you agree with the changing healthcare system it will inevitably lead to new discussions and decisions regarding healthcare rationing as it relates to risky health behaviors. 

Mulling over interesting and quirky stories like this one, could give us good practice for the deeper and more complicated questions we are sure to face in the future.

Updates: Romeike and Pelletier Families

As my avid readers will know, I have been following the legal battles of two families very closely over the past year.  Both families have had an exciting week.

The Romeike Family

The Romeikes are from Germany, they petitioned the United States for asylum so they could have the freedom to homeschool their children.  Homeschooling is illegal in Germany due to a law put in place by Hitler in the 1900s.  For the background on this family please see my article: Why Should We Care About the Romeike Family?

Early this week the Romeikes’ legal petition for asylum received a death blow.  Their petition had been denied by a lower court and they were waiting to hear if the United States Supreme Court would hear the case.  The US Supreme Court denied this request early this week feeling it was not important enough to be heard by them.  The next day, the Department of Homeland Security contacted the legal team for the Romeike family and informed them that they could stay in country indefinitely even though the court had ruled against them.

I am thrilled for this family and so grateful that they can stay in the United States and school their children in accordance with their beliefs.  However, I do not believe we have seen the last of these stories.  There is a reason the government pursued this case to the extreme that it did.  In my opinion, they were looking for a precedent to be set that homeschooling is not a basic human right. 

I am beyond disappointed that the US Supreme Court decided this case was not important enough to review.  I believe passionately that homeschooling is a right and that the Court should have been willing to hear this case and rule that the determination of what is proper education for the children is an undeniable right of their parents.

Interestingly, the US Supreme Court decided this week that it would hear the case of a convicted murderer, who is petitioning the court for the right to keep his beard, which would disobey the rule of the prison.  He states that the prison rule violates his religious freedoms as a Muslim.  I am not trying to say that this case isn’t worthy of the notice of the US Supreme Court, but I don’t understand how Christians petitioning asylum to homeschool their children, stating religious persecution from their home country is somehow less worthy of the Court’s attention.

I fully expect to see more persecution of US homeschooling families in the future; the current administration appears to be hostile to the rights of homeschoolers.  Constant vigilance has been the key to survival for the homeschooling community since I became an active part of it in the 1990s.  I will remain vigilant and I encourage everyone else to do the same.  The evidence is on the side of homeschoolers, who regularly outstrip public school students in education level and (though it is hotly debated) social skills.

The Pelletier Family

The Pelletier family has been fighting for the return of their daughter Justina, who is currently in the custody of the Massachusetts Department of Children and Families.  For back ground info on this case please read: Hospital vs. Parent, The Pelletier Family v. Boston Children’s Hospital, and Pelletier Opinion Pieces: Best and Worst.

After the recent public outcry the judge (same judge as before) has decided to allow Justina to return to her original medical team at Tufts.  Also, the Department of Children and Families has dropped the contempt of court charges on Lou Pelletier for breaking the gag order.  This is a positive step, but this battle will not be over until Justina is returned to the custody of her parents.  Massachusetts Department of Children and Families is also trying to transfer her to the custody of the Connecticut Department of Children and Families, at this point Connecticut is refusing to accept this transfer.  There are also at least a dozen Connecticut legislators that have become involved in this case on the side of the Pelletier family.

The decisions in this case disturb me as well.  Don’t get me wrong, I am thrilled that she is being transferred back to her original doctors at Tufts.  However, If the judge was so convinced that the Pelletiers, as well as the team at Tufts, were abusing this girl, why did his opinion change so quickly once the public became aware and involved in the case? 

He was sure enough to retain state custody of Justina for 13 months and the only recent change has been the public’s involvement and interest in the case.  Call me old fashioned, but I don’t think the 6^th amendment involves the judge changing his mind based on public outcry.  If the transfer to Tufts is in the child’s best interest (what the judge is supposed to be deciding) why did it take 13 months and massive public pressure for the decision to be made.

I was glad to hear that some media outlets still plan to follow this story closely and investigate the Massachusetts Department of Children and Families and Boston Children’s Hospital for ulterior motives, and wrong doing in this case.  I will continue to follow this story as well.

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.