Brandy Schillace is the editor-in-chief of The BMJ’s Medical Humanities journal and the 2018 winner of the Arthur P. Sloan Science Foundation award. She is the author of three books, most recently Mr. Humble and Dr. Butcher: A Monkey’s Head, the Pope’s Neuroscientist, and the Quest to Transplant the Soul, from which this essay has been partly adapted.
The year was 1963. In Dallas, President John F. Kennedy was felled by an assassination. Civil rights protests roiled the South as Martin Luther King Jr. told thousands of people gathered in Washington, D.C., that he had a dream. And in Cleveland, a neurosurgeon named Robert White cut into a monkey’s spinal cord between the C1 and C2 vertebrae, just at the base of its skull, and extracted a perfectly intact, still-living monkey brain from its head.
Most of us can probably imagine a brain, isolated from its body. We might think of a walnut-shaped object of perfect proportions, or a pink orb floating cartoonishly in a jar. It is much more difficult to imagine a live brain, however – one bathed in blood, still metabolizing, still pumping, still full of vital fluids – like Dr. White’s monkey’s brain, on a curious life-support apparatus. It didn’t look like grey matter at all; rather, it was flushed and pink. And most crucially, this first isolated monkey brain was still sending out electrical signals via electroencephalogram (EEG) – just as any living brain inside any living head would do.
As jagged lines scraped over the graph paper, Dr. White had to wonder: Was this brain, entirely excised of its body, still thinking? And if it was thinking, then was the monkey – despite being bodiless – still alive?
That question wouldn’t be easy to answer. After all, the 1960s neurological community couldn’t even agree on what constituted brain death; they were not prepared – or even very interested – in discussing which blips and bleeps constituted life.
Until the middle of the 20th century, it was understood that brain injury led to a halt in respiration, as the damaged brain stopped sending electrical signals to the lungs – death soon followed. But with the advent of ventilators, which fill and compress the lungs on behalf of the patient, brain-traumatized patients could live on, aided by artificial machines. “Brain death” was first described as a concept in 1956, but even then, the criteria were sketchy at best. By the following decade, the novel development of the EEG offered some help. An “isoelectric” signal – a flat line – meant no electrical information was being registered on the EEG; this became part of the criteria for brain death, along with fixed pupils, no reflexes and no autonomous breathing. But that still didn’t really answer the principal question: Is this person dead?
A brain-dead patient might be “as good as dead,” as one neurosurgeon told me, and a state referred to as “beyond coma” might be a prognosis of death, but that still did not make the brain-dead body technically a corpse. On the flip side of the issue, the disembodied monkey brain extracted by Dr. White might have demonstrated EEG activity, one of the criteria for life, but none of the others: no pupil movement because there were no pupils, no breathing because there were no lungs – and in fact, no circulation without the help of the cyborg-like amalgamation of a donor-blood machine.
Today, the concept of brain death and EEG are no longer new and strange. But despite landmark legal cases and additional criteria for determining it, the exact “moment” of death remains hard to define. So fraught are the checklists that it sometimes takes a jury to decide the matter. Take the case of Jahi McMath, for instance. The 13-year-old was declared brain-dead by doctors in California according to neurologic criteria, but her family disagreed, believing that she was alive but seriously disabled, and demanded the death certificate be overturned so she could access what they considered life support. That request was retracted and eventually replaced by a malpractice lawsuit, but the case nevertheless raised difficult questions about the equivalence of brain death and “actual” death, with some physicians noting that having to differentiate the two in the first place meant they were inherently not the same. Challenges against brain death could also have implications for organ donation and the “dead donor rule,” which states that no life-supporting organ can be removed without a death certificate.
But there is another, and perhaps stranger, dilemma: If our legal and medical decisions rest so heavily on the EEG activity of a brain, then the question might not be what is death – but what is life? And how exactly do we measure it?
In 1970, Dr. White – a Catholic who insisted that the brain housed the human soul, and that it ought to be preserved at any cost – followed his brain isolation experiments with the first cephalic transplant, which was, in its essence, a head transplant. Unwilling to rely only on the EEG as evidence that life followed the brain and not the body, Dr. White removed the head of a primate and kept it alive on the body of another monkey so that it might wake up, look about, gnash its teeth and otherwise prove itself living and sentient. He saw a future where a patient in possession of his or her faculties could be similarly rescued from a dying or disease-ravaged body and placed in a new one – or, at least, temporarily housed elsewhere.
Dr. White even had a willing volunteer to be the first human patient. Craig Vetovitz had been rendered tetraplegic by a diving accident in his youth, and had begun to suffer complications with his organs when he met the neurosurgeon. But he was far from done with life: He was married, had children, ran a successful business and travelled all over the world. “It’s not disabilities that make a child or an adult handicapped,” Mr. Vetovitz said in an interview in 1991. “It’s other people who do … by labeling and categorizing them.” He had originally hoped to have a kidney transplant, but was considered a poor candidate due to his condition. For Mr. Vetovitz, it seemed that someone else was making decisions about whether his life was worth extending. In that way, he and Dr. White shared a point of view: Life was in the brain – and thus, value existed with our very consciousness, in whatever form it manifested. That meant the life of a seriously injured, paralyzed, or otherwise physically disabled person qualified for the same extraordinary means of preservation as any more able-bodied patients.
While there were certainly other objections to Dr. White’s proposed surgery – questions of ethics and success rates, concern over the funding required, and the still-fraught issues of finding suitable body donors – the argument most often used against the surgery had to do with the severing of those C1 and C2 vertebrae. The spinal cord, once cut through, would not grow back; the patient would be paralyzed from the neck down. Mr. Vetovitz liked to brag that he had done more in his life from a wheelchair than many able-bodied people, yet that same paralysis loomed large as a means of discounting the surgery. Dr. White attempted to allay such fears by citing the remarkable lives of Stephen Hawking and Christopher Reeve, among others, but Mr. Vetovitz felt he was surely example enough: A disabled life is not a less valuable one. Nonetheless, when the tabloid news show Hard Copy ran a story on the prospective surgery, it referred to the wheelchair-bound man as “Frankenstein’s monster.” Mr. Vetovitz forced producers to re-release the episode without that ableist epithet, but questions persist about what constitutes a valued life.
In Canada, for instance, recent changes to medical assistance in dying (MAID) laws illustrate our still-troubled understanding of life and death. Bill C-7, which passed last month, allows Canadians with chronic illnesses and disabilities whose deaths are “not reasonably foreseeable” to seek MAID from medical assessors and qualified practitioners. The law, which follows the decriminalization of MAID in 2016, was meant to allow more ill Canadians to “die with dignity,” but disability advocates like Jeff Preston have argued that it potentially “devalues [the] lives of disabled people,” and renders their disability only and inherently as “suffering” that should be ended, sooner rather than later.
Critics also argue such a law carries with it echoes of eugenics – the belief that only certain types of hereditary traits are desirable – as well as violating the “dignity of risk,” a term coined in 1972 as a reaction to paternalistic treatment of those with disabilities, whose freedom to choose was often disregarded. It is no longer a matter of whether someone has a right to die, but rather, which lives are worth living – and more importantly, who gets to decide. Understanding the nature of life and of death is necessary to inform the people making those decisions, which will be particularly crucial in the difficult debate to come: The new law will allow those whose sole condition is mental illness to qualify for MAID in two years’ time.
Today, as we increasingly face shortages of medical care brought about by the COVID-19 pandemic, questions about which lives matter, and even about what life truly is, have returned to the fore. Tetraplegic patients, those with progressive motor neuron disease, those who may have non-typical physical or mental capacities – they are all no less worthy of saving, of respirators, of hospital beds. This has become even more apparent as the pandemic enters the vaccine-rollout stage of our recovery, as indicated by California’s January shift in how the state allocated vaccines, prioritizing age instead of the risk factors of occupations or underlying medical conditions and disabilities. “I don’t understand why people do not see us and value us,” disability activist Alice Wong told San Francisco public radio station KQED. “I refuse to defend my humanity and prove my deservingness.”
These non-normative lives are worthy of living and of preservation. But yet, because we have at times worked harder to standardize legal definitions of death than to query assumptions about life, this statement is not as obvious and widely held as it should be. The naked and isolated brain shocks us by still sending out the signals of life, and it is the living, thinking mind that provides us with our most awe-inspiring marker of life.
The body matters and should never be rendered invisible – indeed, activists like Ms. Wong founded the online Disability Visibility movement to help spotlight and appreciate disabled lives and bodies. But in that lab in 1963, Dr. White gave us a vision of life independent of the body’s ability. Maybe that will help to challenge that fine and fragile line between brain life and brain death, and lead to a re-evaluation of our society’s definitions and systems of care.
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