We neurologists never understand why brain death gets attacked. For years, we've pointed to inconsistencies in how it's diagnosed, and we keep hoping that a uniform standard will restore public confidence. The has now created that standard, but at least here in the U.S, our problems are not going away.
After bringing together experts from world federations in relevant specialties, the WBDP developed consensus criteria on diagnosing brain death (also called death by neurologic criteria or DNC) in adults and children, in therapeutic hypothermia and in a variety of clinical situations, new and old. However, some key concerns only get addressed tangentially.
One problem is the false definition of brain death we use here in the U.S. Most states adopted the Uniform Determination of Death Act, which defines brain death as "the irreversible cessation of all functions of the entire brain, including the brain stem." In fact, neuroendocrine and autonomic brain functions who fulfill DNC criteria. Wisely, the WBDP explicitly states that such function may persist in a properly diagnosed DNC patient, focusing on irreversible cessation of consciousness, absent brainstem reflexes and apnea as the essential criteria. They encourage individual countries, by implication including the U.S, to bring our definitions and practice into closer harmony with this new international standard.
The WBDP criteria codify our neurologic, "mainstream medicine" view of DNC, only meeting religious or cultural objections with "education" and with "cultural sensitivity." We typically dismiss religious thinking as mere superstition and a failure to face facts. WBDP implicitly supports our attitude, suggesting accommodating the family's dissent for no more than 48 hours. After which, of course, we do what we planned all along.
In these United States, brain death controversies arise in the context of broad social unrest. Social media fuel distrust of all institutions and empower dissidents, linking them together to reinforce their own views, making it easier to organize demonstrations and other forms of resistance. Our federal response to COVID-19 further reinforces suspicion of science and medicine in all sectors. Their devalues what we understand as objective scientific data.
Long before the Trump administration, evangelical Christianity already questioned the worldview behind mainstream science, while socially marginalized groups now increasingly question white privilege and all mainstream institutions. Often these two streams of critique can merge, especially in the African-American community.
American evangelical Protestants believe in salvation through faith in Jesus Christ and in the Bible as God's Word, with priority over other forms of knowledge. Evangelicals vary a lot in their detailed beliefs, as Protestantism encourages every believer to study the Bible and develop their own personal relationship with Jesus. While many evangelical leaders , leading doesn't count for much in this highly individualistic religious culture. Politically, white evangelicals are mostly conservative, while African-American evangelicals are mostly progressive, but each distrusts mainstream, secular culture for differing reasons.
Because humans are created by God in His image, evangelicals maintain that all human life is sacred. We hear the most about the anti-abortion activists, but a genuinely "pro-life" agenda also opposes capital punishment and physician-assisted suicide, while caring for the severely handicapped, who are also made in God's image. Many evangelicals believe the soul rests in the body more generally, and not specifically in the brain. Some will only accept cessation of heart action as death, holding that a severely impaired person is still a person, still worthy of reverence, and not an empty husk ready for organ harvesting.
Within the African-American community, gratitude, watchful self-interest, anger and deep suspicion intertwine, each well-founded in the Black experience of mainstream medicine. In the US, major teaching hospitals flourished in inner cities, where the pathologies of poverty yielded "good teaching material." Surface benevolence co-existed with deep exploitation, like the at Johns Hopkins. Occasionally, this unequal relationship produced , but quiet exploitation certainly has been the norm.
Even as modern sensibilities rein in the most open abuses, substantial racial disparities still exist in treatment and health outcomes. continue to illustrate in COVID-19 outcomes. Institutional racism persists in schools, prisons, workplace, police procedures, reinforcing and making disparate racial outcomes appear natural to most white Americans. This has started to change with the recent protests following the death of George Floyd and others. But African-Americans were never deceived. Native American, Latino, Muslim, Asian and other groups each have their own complex stories as well
The illustrates these themes. A 13-year-old African-American girl with obstructive sleep apnea went for surgery at Children's Hospital of Oakland. She received an aggressive surgery, apparently a full uvulopalatopharyngoplasty, used for serious obstructive breathing. When she developed massive bleeding and an arrest, physicians would accept this as a rare complication.
However, her family had only understood this surgery as a simple tonsillectomy, so they were deeply shocked at her unexpected coma from an apparently routine procedure. When the very doctors who seemingly killed their daughter assured them that she was brain dead, the family had many reasons to distrust them and requested additional opinions. Through their lawyer, the McMath family eventually expressed that Oakland Children's and its physicians did not accommodate their religious objections to the diagnosis and concept of brain death.
Being people of faith, they received permission to move her to New Jersey where state law permits religious accommodation for families of a brain-dead patient. The family meticulously cared for her in an apartment, and was quite convinced that she eventually made purposeful movements. Objective observers could never be 100% sure they saw a return of consciousness, but the encouragement was enough to sustain the family until Jahi "died" again, this time from complications of kidney and liver failure, and she was taken off life support June 22, 2018. Her original brain death declaration was Dec. 12, 2013.
Possible incomplete communication pre-op and post-op, perceived callousness and a disastrous outcome all activated suspicions in people programmed to distrust the medical system in difficult circumstances. Jahi's family never stopped reverencing her, cared for her meticulously, and rejoiced in the apparent movements she made. They had faith that she was reacting to their voices, and .
Few academic neurologists fully grasp the real reasons for the occasional family resisting brain death determination in their loved ones. While the WBDP laudably addresses technical points to ensure uniform diagnosis, these technical points were never seen or really understood by most families. Mainstream medicine typically addresses spiritual dimensions of care as another problem to be solved. When it seems to impede our management, we may dismiss religious thinking as mere failure to face facts. Focusing on setting better standards for performing the brain death exam, trying to strengthen international uniformity, are valuable first steps, but we have much more to do to win the faith of people who already have reason to distrust us.
Some have proposed legally limiting the liability of doctors and hospitals in brain death cases, but malpractice suits for the events leading up to the diagnosis would still be unaffected. Some have previously suggested bringing our legal definition of "brain death" into closer conformity with actual practice, i.e. tackling the issues of "irreversible," of "all" brain functions or the "entire" brain, as this new international standard will encourage us to do. But we have to avoid making brain death look contingent, partial or mealy-mouthed at a time when most families need clarity and reassurance.
As a clinical neurologist (and an evangelical Christian) I'm fairly comfortable with current practice, even admitting the problems. Carefully following clinical guidelines, supplementing with additional studies when needed, remains a solid bedrock for practice. The neurologic uncertainties with our current practice don't really center on brain death, properly diagnosed. Explaining the uncertainties in long term course of the unresponsive wakeful state (so-called persistent vegetative state) gives the family enough information to make decisions in the cases that don't quite qualify as brain death.
No one who was carefully diagnosed as brain dead has ever recovered enough function for an acceptable quality of life. Many of us feel our real "patients" at this point are the family, who need help in managing their grief and suffering. Regardless of our own faith backgrounds, we physicians must approach these suffering families with deep respect, especially the ones whose positions we disagree with.
In California, mandates that in the case of any "religious or cultural practices and concerns" regarding determination of brain death, "the hospital shall make reasonable efforts to accommodate those religious and cultural practices and concerns." Overall, however, the statute speaks of a "reasonably brief period of accommodation," not an open-ended period of support.
Maintaining humility before the complexity of the human brain, and indeed the human body, best serves us, the patient, their families, and society.
, is a clinical neurologist practicing in San Diego and the stroke medical director at Scripps Mercy Hospital's Chula Vista campus. Grisolía is also editor of the San Diego County Medical Society's monthly Physician magazine.