When Tragedy Turns Tragic

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

In early December 2013, a teenage girl underwent a routine operation to treat her sleep apnea. Although she appeared to have a normal recovery – she was noted to have been sitting in bed, talking with her family – she soon after began to bleed profusely from her nose and mouth. She was placed on a ventilator and given other emergency interventions, but three days later she was declared brain dead by neurologists.

This is where the story should end. Parents lose a child to a seemingly routine procedure, and must rely on their family, community, and faith to put the pieces of their lives back together. But this story – outside of its relevant community, that is – is not over. It continues to live, in the same way that this child, Jahi McMath, continues to live in the eyes of her parents, supporters and, in some ways, the U.S. legal system. This case has been so well publicized – it has spurned many discussions within bioethics circles – and your own local news organizations likely covered it (Jahi and her family are from Oakland, CA). There are two questions that I would like to address in retrospect (although the case is technically still ongoing), although not indefinitely). What are the obligations of the hospital to the family in a situation like this? How can the conflicting obligations between hospital and family be reconciled?

I must say first (though not the first to say it) that dying has become a rather complicated thing. Medical advances have ensured that rather radical measures can be taken to keep blood flowing through the body, thus ensuring that various organs may be maintained and various goals achieved. The discussion often centers around whether this is an appropriate plan for the patient given his/her goals or values, or whether it can achieve any medical benefit. One way to consider this is to ask, does this prolong the patient’s life or does it prolong their death? And, unfortunately, sometimes medical interventions cannot achieve their intended goals, and sometimes this realization comes after we try more intense interventions. Decisions must then be made surrounding withdrawing present treatments or withholding future ones. Or sometimes nothing works, and the patient dies. This is what happened with Jahi; the medical team tried interventions – including ventilating her – that would save her life, and were ultimately unsuccessful. She died.

As a consumer of today’s sensationalized mass media, I understand why media services may wish to splash headlines with a case such as this (see Terri Schiavo, or this). I also notice this can lead to a mischaracterization about what is actually happening. For example, this article begins with, “The right-to-life battle over a 13-year old California girl…” (emphasis mine). This case has nothing to do with the right to life, since the girl died (per the discussion above). This is a battle to be sure, but not about the right for anyone – the girl, her parents, the hospital, or the state – to make any sort of decision about whether this girl should live or die. She died.

Here lies my largest critique of the medical team/hospital in this case. It was their incomplete explanation of what happened to Jahi that proved to be a catalyst for the family’s push to keep Jahi on “life support”. (Jahi was not on life supports, as I contend they are often mislabeled, but rather organ supports, which in turn keep a person alive.) By delineating ‘brain death’ from ‘death’ and treating them as two separate things, confusion can begin by wondering if the former is somehow lesser than the latter. They are different in this way: ‘death’ (as we commonly, culturally understand it) could be characterized as ‘complete death’. That is, two primary things cease to function: the brain and the cardiovascular system. Generations ago, injuries or illness would often lead to these two things to stop functioning simultaneously, or at least very soon after each other. This simply is not the case any more. Thanks to the advent of ventilators and other organ supports, these two systems can be extricated from each other, meaning that a person can continue to function without their own cardiovascular system, as the ventilators will ensure that the blood is oxygenated and is pumped throughout the body.

But these two systems are not created equal, as it were. No living person can function with an artificial central nervous system. The brain is wrapped up so tightly into who we are as humans that injury to it not only changes how we are (motor affects), but also who we are (behavioral or personality changes). So when it dies – and since we cannot substitute it with any type of artificial support like a ventilator – it is considered that we die. If left alone (that is, if not under medical supervision), the cardiac death would soon follow since the heart ceases to function without its instructions from the brain. And so, this is the paradox that medical advances have created but not yet been able to reconcile. Cardiac death does not have to directly lead to complete death (one can receive an artificial or donated heart), provided the brain remains intact (thereby ensuring some sort of meaningful interaction with one’s environment). But brain death, just as irreversible as cardiac death, can never lead to any environmental interactions, regardless of whether artificial supports can continue circulation. In Jahi’s case, her brain died: everything, including the brain stem that controls the most basic of body functions, ceased to function. It wasn’t damaged, in need to rest and therapy in order to recover; it was gone. Dead. That means that regardless of what machine is pumping blood through Jahi’s body, Jahi is not (and would never be) there to experience it. Once the machines stop, her brain will not function and demand that her heart pump, that her blood flow, that her kidneys filter, that her stomach digest. In the crudest of terms, the ventilators are pumping blood through a dead body.

The story is certainly a sad one. A family lost a child unexpectedly, and although perhaps prepared for complications from her routine surgery, the parents were not prepared to have to say goodbye to her. That is a tragedy. And unfortunately, it was made worse by incomplete information- which can always improve, given the time and the will. Words matter. In breaking bad news to families, they can be vital. Also contributing was a general social ignorance about what actually happened to this child- which can always improve, given the time and the will. We as a society – if we wish to prevent such controversies in the future – need to accept our mortality and acknowledge that we need to be able to have open and honest conversations about death. Such conversations can do nothing but clarify our own individual perspectives – and enrich our collective social understanding – about death.

[This blog entry was originally posted in slightly edited form on Mr. Dahlke’s blog on January 21, 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.]

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