Good Intentions...

You know those things “the road to Hell” are paved with…good intentions and (as my current Metro-Detroit existence has convinced me) SNOW.  I did however just come in from shoveling my driveway for the 100^th time since Christmas…so there is a chance that personal bias may be entering in on that second one…

A lighthearted intro, yes, but I want to cover a very heavy topic in this article.  That topic is the sad case of Marlise Munoz and her unborn baby.  As many or all of my readers will know, I am entirely and unabashedly Pro-life.  I am a strong Catholic and believe that life is precious at any stage, from conception to natural death.  To be “Pro-life,” in a Catholic sense, does not mean that you are “Anti-death.”  Life has a natural course: new life is born and people die…it is the inevitable flow of the universe.

Marlise Munoz was a young wife and mother; in November of last year her husband found her unconscious on their kitchen floor.  Both Marlise and her husband, Erick, were paramedics; they were not strangers to the horrors of a medical emergency and end of life treatment.  They had discussed their wishes with one another, and were prepared to make difficult decisions if necessary.

On that November day, Marlise was rushed to the hospital and a few days later was pronounced brain dead.  Her husband knew her wishes and requested that she be removed from life support.  The hospital refused because Marlise was 14 weeks pregnant.  In Texas, the state where this story takes place, there is a law that prohibits the removal of life support if the woman is pregnant.

This law is well intentioned, it is meant, I assume, to remind the medical staff that they have two lives to consider in medical decisions regarding pregnant women.  Though, as so often is the case, the “good intentions” of this law have become the flat stones on which this poor man must tread along his hellish journey. 

The issue here is that there are two lives, and from a medical perspective two patients.  In my opinion, there are certainly two lives, but only one patient.  The two lives are sustained by the same body and both would have suffered from the event in November.  The baby is now at 22 weeks gestation and reports are that he/she is severely abnormal.  Marlise was without oxygen for an extended period of time, enough to cause her full brain death, therefore it is logical to assume that the baby has extensive, possibly fatal damage as well.

This child and mother were not/are not unloved.  To watch an interview with Marlise’s husband is to see the agony in every look and hear his sorrow with every word.  This is a man who has just lost the love of his life, he needs to be able to find closure on this situation and figure out how he will proceed with raising his young son.  Erick Munoz is in an awful position and has been forced to make a seemingly impossible decision.  He knows and has attempted to act on his wife’s wishes, but after what had to be the most painful decision of his life, he finds out that the hospital will not respect his decision.

This week a judge ruled that the life support law does not apply to the Munoz’s case because the law applies to a living woman and Marlise is already dead.  The judge has given the hospital until 5pm on Monday January 27^th to remove life support.  Erick Munoz “won,” if there can be victory in this case, but I am sure he is not celebrating, his only prize is the ability to bury his wife and grieve his loss, something he should have been able to do without court involvement.

Our laws are not prepared to handle nuance, this case is complicated and must be considered carefully and fully.  Bioethics is not all case studies and legal analysis; it is often critical thought, a gut feeling, and an empathetic connection with the family.  If their unborn child had a reasonable chance of survival, my guess is that Erick Munoz, a loving father and husband, would want to give that child his/her best chance.  The truth is, that child has little chance of survival and Erick has decided that it is more crucial at this point for him and his family to have closure on this situation, so they can try to move on from it.  My heart breaks for him and I pray peace and strength for him, his in-laws, and his son.

When speaking of life we must be prepared for and accept death when it comes, Marlise Munoz should have the right not to be held as an incubator for her unborn child, and her husband should have the right to make this decision for his wife when she is unable to make it for herself.  Put yourself in his place, feel a tiny fraction of his pain, and perhaps you will see that he has carried himself with dignity in an impossible situation.  He deserves our compassion, love, and sincerest wishes that he find peace on the long road ahead.

Artificial Concern

Recently, I was sent an article by a friend.  It was called “The Artificial Womb Is Born And The World of the Matrix begins.”

The article was about Japanese research into artificial womb technology.  It talked about how some researchers had transferred a premature goat fetus into an artificial womb for 10 days.

As it went on, the author talked about Children’s Hospital of Philadelphia (CHOP) performing its first intrauterine surgery in May of “this year”…since this surgery happened while I was in middle school, I became a bit skeptical of the other information in the article.  I searched artificial womb on Google and found something very interesting.

The exact article came up about six times on the front page of my search.  It appears that the original article was published in the New York Times in 1996.  Sometime in the fall of 2013 however, this article was plagiarized and republished on several blog sites.  The article received many hits and was listed as one of the most popular reads on several of the sites.  Panicked comments were plentiful; readers were clearly concerned about this impending technological breakthrough.

From a quick search however, it looks like this “new” tech is going nowhere fast.  Not much research has been done on the artificial womb for several years.  The most recent information I could find was a 2002 article in the Guardian that delves into some of the ethical implications of an artificial womb and some of the good that could come from its development. 

The artificial womb project has seen no news worthy developments in several years, so the buzz this article started is completely superficial.  Just goes to show, you can’t believe everything you read.  Also, a quick search of the facts never hurts.

This week’s public service announcement: Be a conscientious reader, check the facts, and think it through before you react and respond.  Imagine if everyone would do this when reading/posting on the internet…or just in life in general?  What a wonderful world that would be…

Hospital vs. Parent

The country has been abuzz with discussion of the sad case of Jahi McMath.  She is a 13 year old girl from Oakland California who went in for a routine tonsillectomy on December 9^th, 2013.  While recovering from surgery Jahi went into cardiac arrest, she was placed on ventilator support, but was shortly thereafter pronounced brain dead.  Jahi’s family has refused to remove her from life support claiming that she is alive so long as her heart continues beating.

The idea of brain death can be confusing for many people.  It is determined by a neurologist, through exams and scans.  The neurologist will do an extensive exam to check reflexes controlled by the brain stem, this involves checking reflexes of the eyes and changing ventilator settings to see if the patient will attempt to breathe on their own.  If these reflexes are not noted during the exam, the patient is pronounced “brain dead,” in 49 of the 50 states “brain death” is considered death, New Jersey is the exception.

It can be a tough concept to realize that a person with a beating heart can still be considered dead, but with modern technology the only reason Jahi is breathing is because the ventilator is pushing air into her lungs.  Legally, Jahi is dead, a death certificate has been issued with the date of Dec 12^th, 2013, 3 days after her tonsillectomy.  Most recently, the family has found an extended care facility that will accept Jahi and her body has been released to the custody of her mother for transport to this facility.

It seems that all of the major news outlets have picked up this story.  It is certainly heart wrenchingly sad, Jahi was a beautiful young girl with a loving family, but why the media focus on this girl and her final days?  Honestly, I don’t see an ethical issue in this case.  I see a devastated mother who has just lost her teenage daughter and is struggling to let her go.  This woman deserves our compassion and our prayers, we should not be treating her pain like a spectator sport.

It interests me that the media has focused so heavily on the story of Jahi McMath while another hospital vs. Parent story has been unfolding, almost unnoticed, on the other side of the country.  I have been following the sad tale of Justina Pelletier over the last few months.  Justina is 15 years old, last February she was taken to Boston Children’s Hospital for flu like symptoms.  Prior to this admission, she had been diagnosed with and treated for Mitochondrial Disease at Tufts. 

Mitochondrial Disease is a very rare and controversial disease.  It varies from patient to patient and treatment is based mostly on relieving symptoms rather than curing the disease.  The diagnosis is relatively new and many physicians believe that it has potential to be misused by parents who over medicalise their children.  Over-medicalization of children can be referred to as medical child abuse, the idea is that parents induce symptoms or insist on treatments (medications and surgeries) for children who are not actually sick.  Because Mitochondrial Disease varies so much from patient to patient it is considered a diagnosis that is highly susceptible to medical child abuse.

Not long after Justina arrived at Boston Children’s the staff changed her diagnosis from Mitochondrial Disease to Somatoform disorder.  Somatoform is a psychological condition where the patient presents with real symptoms, but those symptoms have no physical cause.  With this new diagnosis the staff at Boston Children’s proposed to stop all of Justina’s current medications and move her to Bader 5, the psych ward at Boston Children’s. 

Justina’s parents disagreed, quite vocally, with this decision and asked the staff to confer with Justina’s Tufts physician who had been treating her Mitochondrial Disease.  Justina was moved, against her parents’ wishes, the hospital called child protective services and the Pelletier’s lost custody of their daughter.  Justina has been in Bader 5 since February of last year and her parents have been tirelessly fighting to regain custody.

For 11 months this 15 year old girl has been held against her will at Boston Children’s Hospital, with only one hour of supervised visit time with her family per week.  Where are the cameras?  Where is the media frenzy?  Why hasn’t this story taken off like Sarah Murnaghan, the 10 year old lung transplant patient from this summer, or the “send pizza” sign in the cancer patient’s window, or the sad tale of Jahi McMath?

There are no CNN, MSNBC, or Fox News stories on Justina.  The Boston Globe reported the story, but not until Justina has been in the hospital for 10 months. 

As more information surfaces about this story, it seems that Justina is not alone, at least 4 other families have experienced similar treatment at Boston Children’s Hospital in the last 18 months.  I work at a pediatric hospital and understand that there are parents who do not properly love their children and that there are situations where child protective services should be called.  I don’t know enough about the Pelletier family to make a judgment, but I see enough smoke coming from Boston Children’s on this issue to look for a fire.

How many reports of medical child abuse is average for a pediatric hospital?  Is Boston Children’s above average?

When another respected physician had diagnosed this child with Mitochondrial Disease, why was Boston Children’s allowed to change this diagnosis without consulting her treating physician?

What are a parent’s rights regarding the health care of their child?  Do they have the right to a second opinion?

This story is fascinating and yet on most major news outlets…crickets.  Why? 

Personally, I think we should be talking about Justina, about a pediatric hospital’s responsibility to report abuse, whether a hospital should be held accountable if found to be over-reporting abuse, and what rights a parent has or should have when it comes to medical care for their child.

As of a court decision yesterday, Justina will be transferred out of Boston Children’s Hospital to an independent psychiatric facility in Connecticut.  Her parents have not regained custody, but are hopeful that this transfer will help them in their quest.  My hope is that this transfer allows answers to be found for this young girl and that her safety will be a priority for the decision makers.