Dr. Mark Lazenby reflects on Jahi McMath’s surgery gone wrong

By Mark Lazenby

After waging a public battle to keep their 13-year-old brain-dead daughter, Jahi McMath, on the ventilator, the girl’s family still face the sadness of a simple surgery gone wrong — a routine tonsillectomy to cure sleep apnea. Of course, they signed the consent form that allowed the surgery to proceed. But surely they, as with most of us who have had so-called routine, minor surgeries, were told that the risks of anything going wrong were minimal. Probably they were given some odds, such as less than one percent of people who have this surgery die — odds so miniscule they are hard to comprehend. But Jahi and her family pulled the short straw. Jahi was that one. In that surgery-gone-wrong, Jahi stopped breathing. The doctors put her on a mechanical ventilator.

After this surgery-gone-wrong, Jahi’s brain showed no electrical activity. On this basis, three neurologists declared her dead. With this declaration, the ethics board of the hospital decided it morally acceptable to disconnect the ventilator that keeps her lungs moving and bodily tissues oxygenated. Jahi’s parents objected. They are “Christians with firm religious beliefs that as long as the heart is beating, Jahi is alive,” their lawyer states in an article in the 3 January 2014 edition of the New York Times. Few of us have experienced this sort of tragedy. It is a tragedy with so many facets — medical, ethical, and legal — that it seems hard to get hold of a central issue. Some people, such as Jahi’s family, do not turn to the medical profession to understand the fates of their loved ones. They do not trust bioethicists who defend the rightness of medical experts to declare their loved ones dead. And they do not see the validity of a legal argument stating that they signed a document that informed them that, though improbable, death was possible. Rather, they turn to their religious beliefs to navigate the treacherous waters surrounding decisions about death, especially unexpected death.

Yet surprisingly, in the broad discussions that have ensued, few experts have brought up the issue of religious beliefs, except to give explanation to what seems to them crazy behavior. A faith-based long-term care facility that accepts patients on ventilators offered to take Jahi, hoping with the family for her recovery. In a 14 January 2014 article in the Los Angeles Times, a bioethicist describes the operators of this long-term care facility as, “from a medical point of view,” displaying “disordered thinking…. There is a word for this,” the bioethicist says. “Crazy.”

When religious beliefs are viewed as the source of craziness, we compound the tragedy by forcing families to wage public battle to do what they think they must do as believers. After all, the stakes for these families are higher than mere medical facts, bioethical principles, or the law. The stakes are God’s eternal judgment of whether they were faithful in matters of life and death.

What might have happened if, in caring for Jahi’s family after the surgery-gone-wrong, the focus had been on helping them to be faithful believers? What if, instead of focusing on medical facts, bioethical principles, and legal precedents, we “went with” Jahi’s family’s beliefs — even if we didn’t hold these beliefs ourselves? Perhaps we could have recited with them their own belief that God raises the dead to new life. What if we had shared with them the words of the Apostle Paul? “There are heavenly bodies and there are earthly bodies, but the glory of the heavenly is one thing, and that of the earthly is another…. So will it be with the resurrection of the dead” (1 Cor. 15:40-42 RSV). Perhaps then they might have been more willing to turn Jahi’s now lifeless body over to God, and not to the mechanical ventilator that the very profession who declared her dead trusted in themselves in the operating room when they hooked her up to it in the first place. More important, the healthcare professionals involved might have realized that they do not have power over life and death.

If healthcare providers, bioethicists, and jurists could have joined with clergy to engage the faith of Jahi’s family and encouraged them to trust God to resurrect her now shattered earthly body into a glorious heavenly one, perhaps a public battle would not have ensued, and perhaps we wouldn’t have felt the need to have called people who came to their aid crazy. Speculation of what might have happened aside, if we do not engage families’ religious beliefs in the profound moments of making decisions about death we run the risk of compounding their tragedy in a very public battle — a battle of our making, not theirs.

Dr. Mark Lazenby is an Assistant Professor at Yale University School of Nursing, and co-author of Safe Passage: A Global Spiritual Sourcebook for Care at the End of Life.

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Image credit: National Institute of Mental Health, Public Domain via Wikimedia Commons.

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