In the intensive care unit, we are able to manage each patient by treating separate organ systems—heart, lungs, kidneys, brain—and carefully titrating medications and adjusting machine settings to ensure optimal function. For those with serious, but treatable conditions, these measures are life saving.
The danger, of course, is that this capability allows us to straddle the increasingly blurred line between life and death for indefinite lengths of time. And for those who are beyond the point of saving—those whose bodily systems lack coordinated action and will never function independent of this intensive medical care—these measures may provide a false sense of hope while draining the emotional capacity of a family.
The brain, that mysterious organ that makes us human and allows us to feel, think, and be unique selves, is ultimately responsible for coordinating and integrating our bodily functions. The death of the brain almost always spells the death of the person. While this sounds simple, the lines are never clear in medicine. Depending on the extent of injury and the brain regions involved, some types of brain damage are reparable or even reversible, while others spell irrevocable death.
In between these extremes is a murky gray zone where factors like the age and health of the patient, time to treatment, and a sea of unknowns influence the outcome.
This is a debate had by physicians and families all across the world, every day. Cases currently in the national spotlight illustrate the discrepancy between medical and personal definitions of death. In early December, on a dental chair in Hawaii, 3-year-old Finley Boyle received a suspected overdose of sedatives for her root canal procedure, went into cardiac arrest, and suffered massive brain damage. Subsequent tests by doctors showed that Finley was in a persistent vegetative state, leaving her parents with the heart-wrenching decision to withdraw life support. And at Children’s Hospital Oakland, 13 year old Jahi McMath suffered brain death after a surgery to remove her tonsils and adenoids was complicated by massive blood loss and cardiac arrest.
“The death of the brain almost always spells the death of the person.”
Despite being pronounced legally dead by doctors, her parents contend that the presence of a heartbeat indicates that Jahi is still alive and should be provided with all possible life sustaining measures. A weeklong struggle pursued in the courts between the hospital, which contended that Jahi should be removed from ventilator support because it is unethical to perform medical procedures on a deceased person, and the family, who maintained that she showed signs of life and deserved the best chance for survival. The final agreement allowed Jahi to be transferred to a new facility that would continue her care.
The transfer occurred last week.
These cases have resulted in embroiled legal battles, raising the issue of what brain death actually means and demonstrating its misconception. A key problem here is that medicine has its own language and a large information gap persists between medical professionals and patients. Those who are not versed in the lexicon are often left confused, frustrated, and misunderstood.
So to clarify, brain death is death, plain and simple, because the brain is essential for integrating critical functions of the body. Brain death implies the complete and permanent absence of neurological function in the cortex and the brainstem. The central nervous system is the maestro of high level functions like reasoning and stimulus response, breathing, hormone management, temperature regulation, appetite, speech, movement, and the list goes on. In reality, everyone ultimately succumbs to brain death and the final common pathway is a lack of oxygenation and glucose to the brain, whether it be because of a massive stroke or failure of the heart. The diagnosis of brain death is usually made at the bedside with corroborating clinical and neuroimaging evidence. Multiple physicians from different specialties work together and conduct advanced neurologic exams to demonstrate absent cerebral and brainstem function. Such tests may include an electroencephalogram (EEG) and cerebral blood flow studies, which show absent electrical activity and blood flow to the brain.
The problem with the medical-legal term “brain death,” is that when used amongst nonmedical professionals, it may convey partial or incomplete death. Since the brain is not the entire body, if the heart still beats, if muscles still move, and blood still flows, one could reason that death is incomplete and a part of the patient still be alive. One could take it a step further to say that terminating “life support” implies that the patient is victimized by the decision to end care. The confusion is confounded by the fact that, despite our best attempts, consciousness is still a nebulous concept without a concrete definition and method of assessment.
The medical approach attempts to tease apart degrees of consciousness based on verbal behavior, arousal, brain activity, brain blood flow imaging and purposeful movement. Consciousness appears to exist along a continuum, the degrees of which are informed by disorders or altered states such as sleep, locked in syndrome, coma, persistent vegetative state, and death. Somewhere in the middle of the spectrum resides coma, which is characterized by lack of both awareness and wakefulness even though some cortical and brainstem activity persists. Comatose patients have the potential for recovery or to survive in a persistent vegetative state, in which most higher-level cognitive function is lost.
Ariel Sharon, Israel’s prime minister who suffered a massive stroke eight years ago and recently passed away was in a coma. Terri Schiavo, on the other hand, was in a vegetative state. Both were medically and legally alive.
Since the body of a brain dead person can still have a heartbeat, can still produce urine, and can still accomplish oxygen exchange with the help of a breathing machine, those who have not dealt with brain death may conclude that at least a part of the patient is still alive and perhaps the other parts are on the mend with appropriate time and support. Sure the cost of care, logistics, and wishes of the patient make the withdrawal of support seem like a financial and functional decision, but in all honesty, those are a big part of it.
Caring for a patient who is functionally deceased is very expensive and laborious, and the question is—can you, even with all the resources, provide a meaning existence for this person? These topics are particularly challenging in children, who likely do not engage in end-of-life discussions with their parents, and probably, rightfully so.
In many cases, however, the sad reality of extended life support for a brain dead person is a vicious cycle of infections, medications and procedures as organ systems deteriorate without coordinated orchestration from the brain. What’s more unfortunate is that this losing battle can take weeks, months, and even years to resolve, leaving emotional and financial wreckage in its wake. This is not fair to any party involved and it only adds to the widespread confusion and frank avoidance of ethical issues surrounding end of life care.
Moving forward, we must determine and demand the adoption of strict standards for the diagnosis of brain death across institutions nationwide such that an already gray zone does not get unnecessarily hazier. The extremely rare, but real cases of patient’s waking up after being mislabeled as brain dead offers a false sense of hope which families naturally cling to, at all costs. Variability in adherence to published guidelines and documentation of brain death criteria must be strongly discouraged to minimize confusion among the general population, many of whom will be in similar circumstances facing end-of-life decisions down the road.
As evidenced by the McMath case, when the legal system gets involved to arbitrate, the nature of the situation changes—a sad and mournful tragedy transforms into a bitter and accusatory sociopolitical battle for an impossible justice. Somewhere in the equation, the actual patient—the once living, breathing, thinking person—gets lost and dehumanized amidst a long and miserable decline in the intensive care unit and 24-hour media coverage.
When anguish, fear, and confusion trample the spirit of those we love and those we mourn, true justice is but a dream.