The many ways we die

Jewish Perspectives on Bioethics

It’s impossible to imagine the grief and shock of a mother confronted with the sudden death of her child.

Having just undergone a routine tonsillectomy, Jahi McMath’s recovery went horribly wrong. She suddenly started bleeding into her brain and suffered severe, irrecoverable neurological damage that led to virtually all parts of her brain shutting down. Neurologists determined that she was permanently unconscious with no hope of recovery, without basic reflexes and functions (pupillary response, gag reflex) and irreversibly unable to breathe on her own. Jahi was brain dead and the hospital staff wanted to disconnect her from life-support.

In utter disbelief, Jahi’s mother took to court and challenged the accuracy of the diagnosis, with the hospital’s refusal to release her medical records, prompting concerns of conspiracy. But even after a court ordered assessment by an independent neurologist confirmed the grim diagnosis, Jahi’s mother is still insistent that her daughter is alive and waiting for a miraculous recovery. She is demanding that Jahi not be removed from life-support, which the judge decided will be shortly withdrawn.

While her hope is noble, it is highly confused. Jahi is brain dead, which according to the law means that it’s not just her brain that’s dead, but that Jahi as a person is dead. It’s admittedly confusing, since in brain death, even though the brain largely no longer exerts control over the body, many other physiological processes can continue with appropriate medical support. It’s for this reason that Jahi’s heart continues to beat and her body remains warm. But legally speaking she is dead and it’s therefore inappropriate to describe her medical care as “life-support,” no matter how it may appear to her loved ones. The hospital has no duty to provide care for the dead and the family has no standing to challenge that decision.

The family is nonetheless adamant that care continues, even trying to move Jahi to a facility that will follow their wishes. For their part, the hospital is even refusing to cooperate in the transfer, since their mandate is to treat living patients.

It’s a completely terrible situation.

Looking to learn from the situation, for us mere observers, perhaps Jahi’s family’s refusal to accept brain death as death can prompt important discussion of how it is that we diagnose death. But more than just the technicalities of the diagnosis – which is frankly a job for doctors – why is it that we as a society define death in a particular way?

Historically, a person was considered dead when they stopped breathing and their heartbeat ceased. In the latter part of last century, brain death became accepted as a second track through which a person would be considered dead.

Leaving history aside, it’s important to understand how we decide what constitutes death and why we arrive at those conclusions. Ever since the introduction of the notion, there has been and continues to be significant debate – both in the bioethical as well as the Jewish worlds – whether brain death should indeed constitute death. And even while the law clearly recognizes brain death as death, there continues to be vigorous debate in the bioethics literature to this day. My Defining the Moment: Understanding Brain Death in Halakhah surveys the conflicting Jewish perspectives on the issue and puts them into conversation with each other and with general bioethics.

Regardless of whether we choose cessation of breathing, heartbeat, or brain function as the definition of death, we need to identify why we made that selection. We make our choice because we assign significant value and importance to one of these functions so much so, that lacking this function – we consider a person to be dead. Death is then not a fact to be discovered, but a status to be conferred based on answering questions of why, assigning values, and making moral judgments.

It’s true that legally “brain dead is dead” – but not because it’s factually correct, but because the law represents society’s collective value and moral decisions. The legal system as well as most professional medical associations (and in their wake, public perception as well) chose brain based criteria for determining death based on these very judgments, although the reasoning has changed significantly in the last 30 years.

Since the determination of death requires a value judgment, reasonable people may reasonably disagree; and they certainly have.

The question that we face in our society that accepts, tolerates, accommodates, and even invites differing perspectives is should we allow for multiple definitions of death. Does the ‘need’ – be it theoretical, practical, or both – to have a uniform definition of death override our sense of pluralism in the marketplace of values and ideas? Or perhaps, does our openness to difference trump the desired uniformity of practice, even while creating significant, albeit not necessarily insurmountable complications. If so, do we allow each person to follow their own conscience or allow people to choose one option from amongst definitions that society deems appropriate? The ramifications of either decision are far-reaching and the State’s interest in uniformity, even as a mere practical matter, may indeed override all other values and concerns.

There are those in the Bioethics world who would prefer that we not talk about these topics, demanding that journals refuse to publish articles challenging the status quo of death determinations.

Censoring the exchange of ideas is dangerous. It sets a negative precedent of limiting the legitimate exchange of ideas. But even from a completely self-centered perspective, by closing our minds to opinions that differ from our own, we limit our ability to think critically about our own positions.

Questions about pluralism in defining death may not have easy or comfortable answers. In balancing values that we cherish against each other – we are able to learn more about our own opinions, sharpen them, and learn to better appreciate and respect those who differ from us.