by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)
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 9th, 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 12th, 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 medicalize 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.
[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on January 12, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]