Cases like this are obviously heartbreaking but from a bioethical perspective, they are also incredibly frustrating. Jahi McMath, a twelve year old girl, was admitted Children’s Hospital Oakland for a routine tonsillectomy but went into cardiac arrest after complications that left her bleeding profusely. She was declared brain dead on Dec. 12. Children’s sought to remove the ventilator but were prevented by the family’s request for a court order to keep Jahi on the ventilator. At this point, Jahi has been examined by six different neurologists who agree that she is brain dead. The family, however, is desperate to have care for their daughter continued. They have identified two care facilities that will continue to offer care for her and they are trying to raise money to have her transferred, but Children’s refuses to install a trachea or gastric feeding tube necessary for her to be moved. The hospital insists that it would be wrong to perform medical procedures on what is essentially a corpse.
And the hospital is right. Jahi is dead. Her death is tragic and we still don’t understand why she is dead, but she is dead.
It is, however, understandable that her family wants to keep fighting. There is a justifiable suspicion about the validity of brain death in our society. The term “brain dead” gets thrown around to mean a lot of things that it does not necessarily mean. The page on brain death from the National Catholic Bioethics Quarterly states:
The media is often imprecise in the way that they say that a patient who is brain dead “had life support removed, and died.” Obviously, one who is dead cannot die again. Reporting such as this shows a careless imprecision in the use of language and a general ignorance about neurological criteria for ascertaining death.
By way of contrast “brain death” is a legal declaration of death, and has been since 1981 with the Uniform Determination of Death Act. It means that the whole brain including the brain stem has irreversibly ceased functioning. Moreover, brain death is an acceptable means of determining death even from a “pro-life” religious perspective. When we speak about brain death, we aren’t referring to a different way of dying, but rather a different means of determining when death has occurred. Brain death criteria are acceptable according to the magisterial authority in the Roman Catholic Church, though in light of Charlie’s post on this site, I should say more precisely that the Church can only make definitive judgments on faith and morals and that there is nothing about brain death or the criteria for determining brain death that is opposed to a Catholic pro-life worldview. The Church cannot teach definitely when death occurs from a scientific viewpoint. Theologically, we can only say that death is the separation of the soul from the body, but that event cannot be observed empirically. Moreover, no medical determination of death, whether according to cardiac or neurological criteria, can ever grant absolute certainty that death, that is, the separation of the soul from the body, has occurred. Of course, God can work a miracle. But prudential medical decisions cannot be made based merely on the hope that God might choose to act miraculously.
The first thing we are learning from Jahi’s tragic story is that we need more public awareness about what brain death is, and we need more consistency about how the term “brain death” is applied. A neurologist who came to speak to my bioethics class, himself a faithful Catholic, explained that brain death, in his opinion, is a more sound means of determining death than cardiac criteria. When a person’s heart stops, it might start again. We have no way of knowing if it will, and no clear line of irreversibility after which it won’t. But with brain death, we have a list of tests that provide certainty that the brain will not start functioning again, among them an EEG, but also tests of primitive reflexes that indicate the whole brain has stopped functioning. These tests, if correctly applied, provide clinical certainty of diagnosis.
However, there are no regulations as to which tests must be performed and by whom in determining brain death. Standards vary from institution to institution. We need more uniform standards for determining a brain death diagnosis. This will aid in creating more public sympathy for the usefulness of the term. This is the second thing we are learning.
Finally, Jahi’s family deserves sympathy but their desire to continue providing care for her does not need to be indulged. They need to grieve their daughter, not fight for an unrealistic hope of recovery. The pro-life community needs to step up to the task here and make it clear that valid determinations of death, as it appears this one is, are not “anti-life” moves made by death panels, but scientifically and morally valid ways of recognizing a great tragedy. A little girl has died. We don’t need to fight about it, but we should make sure her story doesn’t get repeated.
Thanks, Beth, for this straightforward discussion of a very tragic case. I am especially struck by the poignancy of your observation that “God can work a miracle. But prudential medical decisions cannot be made based merely on the hope that God might choose to act miraculously.”
It seems to me that the hope for a miracle enters quite frequently into people’s thinking about end-of-life decision-making. In this particular case, the intensity of that hope suggests to me that the challenge of convincing the family of the reliability of the indicator of total brain death may be superseded by another: namely, enabling them to understand that the absence of a reversal of death is not a failure of God’s providence. This begs the question of the extent to which caregivers require theological training. However one answers this question, it’s clear that most of our medical ethics textbooks provide little guidance to practitioners who are faced with the decision-maker who hopes for a miracle.
I value thoughtful articles like this. Simply by its tenor, the lack of hysteria, laypeople like me can be confident that we’re learning about a complex issue from the perspective of a well-informed honest broker. Especially helpful is what Dr. Haile writes about what society at large can learn from this sad story. Dominus vobiscum.