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Attorney Christopher Dolan points to an MRI of Jahi McMath during an Oct. 3, 2014, news conference on the teen’s case, at his law office in San Francisco. (photo: Eric Risberg / AP Photo)

COMMENTARY: People of good will in and out of the medical community should support medical research seeking innovative, morally uncontentious ways to replace failing organs.

 

In 1968 an influential Harvard Medical School committee introduced brain death with the oxymoronic definition “irreversible coma as a new criterion for death,” disregarding the fact that to be in a coma is not to be dead but alive. Declaring a person dead by brain death criteria is the primary means by which organs are obtained for transplantation.

The validity of brain death criteria is disputed among those who uphold the belief in the inherent dignity of every human being. Some, including myself, are convinced that brain death does not represent the death of the human person.

Others think that if there is total, irreversible loss of all brain function, the human person is dead. I propose that, regardless of which position an individual holds, all of us should oppose the use of brain death criteria in clinical practice.

The validity of brain death can be assessed at two levels. The first is at the theoretical level: If the brain is destroyed — that is, has undergone “total pathologic necrosis” — is the human person, of necessity, dead? The second is at the practical level: Has the brain in fact undergone destruction in a person declared brain dead?

When examining any bioethical issue, we must begin by examining the scientific evidence — reality must be our starting point. Next, we analyze the scientific evidence using philosophy and theology. Finally, we come to a moral conclusion. If we do not proceed in this order (for example, if we conceive a philosophical idea and then try to artificially impose it onto reality), we make fundamental mistakes, resulting in erroneous conclusions. For this reason we will examine what the cases of three real patients reveal.

The Case of “TK”

The case of “TK” addresses the theoretical soundness of brain death. A 2006 article about his case in the Journal of Child Neurology directly addresses the critical question whether, when the brain is completely destroyed, the human person is necessarily dead.

At age 4, TK was stricken by a type of bacterial meningitis. This infection destroyed his brain. It is critical to understand that TK had no brain tissue whatsoever. TK’s brain was truly dead. But was TK the human person dead?

Despite having no brain, TK survived for 20 years. He used nutrients from tube feedings, fought infection, maintained body temperature and underwent proportionate physical growth. In other words, TK’s body continued to work as a unified whole. I argue there is no way to account for this except for the persistent presence of his soul, the principle of integration of the body. TK’s case demonstrates that a human being can continue to live in the absence of any functional brain tissue.

Some scholars from the Judeo-Christian tradition who support the use of brain-death criteria maintain, using elaborate philosophical arguments, that, although TK survived 20 years, he was actually dead that entire time. By contrast, a minority of Catholic scholars who support brain-death criteria maintain that TK’s body was alive but that TK himself wasn’t. Both views are like the emperor with no clothes — they ask us to disbelieve our own eyes, and they insist that TK only appeared to be alive, or that what was alive only appeared to be TK.

Readers can decide for themselves, using common sense, whether a patient who is warm and pink, has a heartbeat, demonstrates proportionate physical growth and survives for 20 years is alive or dead — and, if alive, whether he is a human being or a new, non-mammalian biological species that doesn’t exist in nature.

The Case of Zack Dunlap

We now turn to the soundness of brain death at the practical level: If a patient is declared brain dead, is the brain destroyed? The medical guidelines for declaring an adult patient brain dead in the United States are those of the American Academy of Neurology (AAN), first published in 1995 and last revised in 2010. The pediatric guidelines are very similar to the adult guidelines.

The first case we will examine to address this question is that of Zack Dunlap. Zack is from a small town outside of Oklahoma City. In 2007, at the age of 21, he sustained a severe brain injury in an ATV accident. He was airlifted to a hospital and 36 hours after the accident was declared brain dead.

Zack had indicated on his driver’s license that he wished to be an organ donor, and his parents gave permission for his organs to be removed. Around this time Zack’s cousin, who was a nurse, became concerned that Zack wasn’t dead. He held Zack’s foot and scraped his heel with a pocket knife. Zack jerked his foot out of his cousin’s hand. His cousin then stuck his fingernail beneath Zack’s fingernail in a painful area. Zack drew his hand away. These movements put the diagnosis of brain death in doubt, and the imminent organ removal was called off. Zack narrowly escaped death by organ harvesting.

Five days later Zack opened his eyes. Twelve days later Zack told his parents “I love you” and took his first steps. Forty-eight days later Zack walked out of the rehab center and returned home. Zack later recounted that he could hear the doctor declare him brain dead and that he felt angry, but that he was unable to communicate.

Zack’s case illustrates an example of a patient declared brain dead who was (1) not dead, (2) not brain dead and (3) made a complete recovery. Brain death proponents may argue that Zack’s case is not formally documented and therefore cannot be used as an example of failure of the AAN guidelines. On a pragmatic level we can ask: Does it really matter? Zack’s case is an example of a serious misdiagnosis in clinical practice, whether attributable to the guidelines being less than 100% foolproof or to the known variability in following the guidelines.

The Case of Jahi McMath

Now we come to the case of Jahi McMath. In 2013, at the age of 13, Jahi underwent throat surgery for her sleep apnea. Afterward she developed excessive bleeding at the surgical site and her condition declined. At one point Jahi’s heart stopped for 10 minutes. Two days later Jahi was declared brain dead.

In Jahi’s case the guidelines for a diagnosis of brain death were strictly followed and documented. Nonetheless, Jahi survived for more than four years until succumbing to abdominal complications. She spent most of that time in her mother’s apartment supported by a ventilator and tube feedings. Videos show Jahi moving and responding appropriately to simple commands. Jahi underwent the changes of puberty, including menstruation. The MRI scan showed preservation of large parts of her brain.

Jahi was declared brain dead using the current medical guidelines, but she was neither (1) dead nor (2) brain dead.

‘Brain Dead’ Doesn’t Mean Dead

This raises the question: How many patients like Zack and Jahi are there whose cases never come to light, either because life support is stopped or organs are harvested?

Earlier this year Michael Nair-Collins and Ari R. Joffe cowrote a chapter in the Handbook of Clinical Neurology in which they examined the question: What percentage of patients declared brain dead have persistent function of the hypothalamus (a part of the brain)?

Those unfamiliar with the brain death literature will be surprised to learn that approximately half of patients declared brain dead have persistent function of the hypothalamus. But these patients can still be declared brain dead because the AAN guidelines consider persistent hypothalamic function irrelevant to a diagnosis of brain death.

But this violates what most defenders of brain-death criteria from the Judeo-Christian tradition stipulate as necessary for a declaration of brain death to be valid: the complete loss of brain function. Because there cannot be a complete loss of brain function if part of the brain (the hypothalamus) still functions.

And because there is a 50-50 chance that a patient declared brain dead will still possess hypothalamic function, according to their criteria there is a 50-50 chance that a patient declared brain dead will still be alive. In the United States that amounts to approximately 7,500 to 10,000 “brain dead” patients having their organs harvested while still alive each year.

Fighting the Rising Tide of Brain-Death Criteria

If this balance were to tip — for example, if every patient declared brain dead were given time for the potential return of some brain function to manifest itself, rather than rapid organ harvesting within a few days — it would certainly be in the direction of more patients being alive, not dead. Moreover, the number of patients with persistent brain function of any type could be much higher than half, as many brain functions are not clinically tested.

No one has proposed a “more accurate” medical standard for the U.S. And while there is no sign of the medical standard changing, change is being actively pursued at the level of law — to make a declaration of brain death easier, not more difficult. A currently proposed revision to the Uniform Determination of Death Act, the model law for brain death in the U.S., seeks to do precisely that.

A fundamental principle of medical ethics is that of informed consent. This means that a patient should be told the risks, benefits and alternatives of a medical intervention. Those who support the theoretical validity of brain death criteria should, at the very least, advocate for informed consent.

For those who hold that the entire brain must be destroyed for a declaration of brain death to be valid, informed consent requires disclosing to concerned parties (such as those deciding whether to be an organ donor on their driver’s license) that at least half of patients declared dead using brain death criteria are still alive. Moreover, it requires revealing that there is a risk, however small, of being conscious when declared brain dead (as happened to Zack) and perhaps even while organs are being removed. It seems unlikely many people would sign up to become organ donors with this knowledge.

I believe a better approach is that all those who believe in the sanctity of life, regardless of whether they support or oppose the theoretical validity of brain-death criteria, oppose the use of brain-death criteria to obtain organs for transplantation in clinical practice. We can then, as a single voice, support medical research seeking innovative, morally uncontentious ways to replace failing organs.

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