Each person thinks that he has the formula for triumph over life’s limitations and knows with authority what it means to be a man….”– Ernest Becker, The Denial of Death, p. 255
This is precisely the question right now in not one but two headline cases. One concerns 13-year-old Jahi McMath in Oakland, CA, who developed complications following surgery for sleep apnea. She lost a large amount of blood and doctors declared brain dead on December 12. Yet, her parents have fought to keep her connected to a ventilator.
The other case, reappearing in the headlines during this past week, involves Marlise Munoz, a 33-year-old woman from Fort Worth, TX, who collapsed from a blood clot while 14 weeks pregnant. Munoz has also been declared brain dead, but this time, until a state district judge intervened last Friday, the hospital refused to remove her from the ventilator because it would harm the fetus. The state law in Texas bars hospitals from removing “life-sustaining treatment” from pregnant women. But this judge declared that because Munoz was brain dead she was legally dead, and therefore the family’s wishes to disconnect her from the ventilator could be honored.
The brain is dead but the heart continues to beat…is that lie, death, or some terrible form of limbo medical science has yet to classify as separate from life and death?
The parents of Jahi McMath are convinced that their daughter is responsive—that on some level—signified by the heartbeat—she knows they are there, and that despite all medical evidence to the contrary, she will return to “life.” Therefore, they go on fighting for her continued care.
The Munoz family, however, had been fighting for Marlise’s right to die, especially since they had little hope that even the fetus could have successfully weathered Marlise’s condition. Indeed, The New York Times reported that there have been few studies of fetuses surviving in the wombs of brain-dead women, and only one of five that had been 13-15 weeks at the time of the mother’s death survived birth. Additionally, the obstetricians said that it is nearly impossible tell how much neurological and physiological damage these fetuses might sustain under such conditions.
In a think piece for The New York Times, Carey and Grady quoted James L. Bernat, a neuroscience professor at Dartmouth, described these conditions of brain death by saying “part of the organism is still alive, obviously, but the organism as a whole—the human being—is gone” (Carey & Grady, 2014).
In The Denial of Death, Becker notes the wisdom from the Enlightenment predicting a utopian world in which death could be delayed tens if not hundreds of years. The problem, though, they realized, was that “postponement of death is not a solution to the fear of death… there will still remain the fear of dying prematurely” (p. 267).
In both cases, I suspect, it is fear of death that is the driving force—for Jahi’s parents as well as for the doctors in Fort Worth who were caring for Munoz and her fetus. This is the dilemma of existence, as Becker says—we are born, only eventually to die. No matter how much training, how much expertise the doctors might have, they cannot change this existential given. Medical science has ways to prolong life, ameliorate suffering, and test for etiologies. But it cannot defy the limits of existence.
But fear must be respected too. It is almost as formidable a force as death. While fear, unlike death, may be vanquished or quelled from time to time, it fights hard and not always fairly. Jahi’s parents are battling fear right now—the fear of having to let go of their daughter way too soon and way too unexpectedly. If they need more time—to hear her heart beat, to brush her hair, or touch her cheek as she lies in bed—is that such a terrible thing that they are granted that time?
And would it have been so terrible for the doctors in Fort Worth to respect the wishes of Munoz’s family without the need for a judge’s intervention, and let her and her fetus go? To allow the family to mourn and grieve as they have needed to—rather than continue to inflict the kind of pain they were inflicting by prolonging this case against the family’s will in the name of the “law” and “medical science”? Isn’t that a violation of the Hippocratic Oath to do no harm?
Who decides when the essential parts of what makes a human being human—whether that is the organic brain and heart, the larger mind, the soul, or something else beyond definition—appear to be irretrievably gone? A doctor, a family member, a clergy member, a shaman? There may not be any sufficient answer to this question. What we do know, however, is that for all the blessings medical science has brought us, it has made the question of when do we die much harder to answer.
Becker, E. (1973). The denial of death. New York, NY: Free Press Paperbacks.
Carey, B. & Grady, D. (2014, January 9). At issue in 2 wrenching cases: What to do after the brain dies. The New York Times [Online Edition]. Retrieved from: http://www.nytimes.com/2014/01/10/health/the-science-behind-brain-death….
— Sarah Kass