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Posted by Dr. Lachlan Forrow January 20, 2014 05:32 AM
It used to be pretty obvious.
But the swirling controversies about 13-year old Jahi McMath, including a video of her parents explaining why they refuse to accept that she is "dead", demonstrate vividly and painfully that it no longer is.
Her parents are not the first to question current medical and legal definitions of when someone is "dead" -- I was involved myself in a very difficult case at my own hospital several years ago.
For Jahi's doctors, it was simple, obvious, and indisputable.
On December 9th, Jahi suffered a major hemorrhage after throat surgery, and despite full life support, including a mechanical ventilator to breathe for her, lapsed into a deep coma. On December 12, doctors confirmed that she had irreversible loss of all brain function (a result of her brain being deprived of oxygen for too long), and in accordance with legal standards for defining and determining death, declared her dead and issued a death certificate.
For Jahi's parents, it was also simple, obvious, and indisputable.
As her mother said, "Her heart is still beating, so there is still life there."
As is typical in "brain death", because of the "life support" machines, including the mechanical ventilator that was breathing for her, the rest of her body, including her heart, had continued to receive oxygen, and so had continued to function. But she was now "legally dead" in accordance with standard "brain death" criteria that are accepted in all 50 states. Normally, all machines are then stopped. With her brain itself not functioning at all, she would not take any breaths on her own, oxygen to her heart would plummet, her heart would stop beating, and her body would be transferred to a funeral home. Her parents, however, refused to accept that, and promptly went to court, which ordered that the mechanical ventilator be continued until the case could be reviewed in more detail.
Until very recently, for all of human history people everywhere could agree about the difference between a living human being and a dead body, or "corpse". We used to refer to someone who is alive as "living and breathing", even though those two words were actually redundant. When someone stopped breathing for more than a few moments, which was usually pretty obvious to everyone around them, they were dead. When breathing stopped, the body had no oxygen, so the heart, the brain, and everything else was either simultaneously, or very soon, "dead". The body then rapidly becomes cold (on TV crime shows, just how cold is a common way that investigators estimate the "time of death"), rigid ("rigor mortis"), and (at least for Caucasians) pale/gray as red blood cells no longer flow through and give color to the skin's surface, and family or others then "dispose" of the "corpse".
Change started on May 28, 1908, when doctors showed that a mechanical ventilator could revive a dog who had been "smothered" and stopped breathing, and presumably was "dead" by conventional standards. The NY Times reported the next day that people "cheered" as the dog then "wagged its tail". An animal that had stopped breathing was no longer clearly "dead".
As use of mechanical ventilators became available in the medical care of humans, independent breathing was no longer required for someone to be alive. With the development by James Elars and Peter Safar of CPR in the 1950's, even someone's heart stopping did not mean their "death", since sometimes the heart could be restarted, and the person revived -- brought "back to life". Suddenly, a person whose breathing and heart had both unquestionably stopped was not necessarily "dead".
Construction of "Intensive Care Units" in hospitals then followed rapidly, now constituting nearly 20% of all hospital beds in the U.S. Many of the patients in these units are kept alive with mechanical ventilators supporting their breathing, and with advanced cardiac medications and support systems keeping their hearts beating.
But in the 1960's, doctors noted that some of these patients had no signs of brain activity, often as the result of prolonged lack of oxygen during a cardiopulmonary "arrest". Questioning whether these patients should even be considered "alive" led a Harvard committee in 1968 to propose "brain death" criteria for determining that some patients have died, even if their breathing continues because of mechanical ventilation, and their hearts continue to beat. In 1980, "The Uniform Determination of Death Act" (UDDA) was prepared as a model for state laws (which set criteria for whether someone is alive or dead), in cooperation with the American Medical Association, the American Bar Association, and the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. According to UDDA criteria, now accepted in all 50 states:
"An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead.
By law in California, as in other states, once doctors had determined that Jahi had suffered "irreversible cessation of all functions of the entire brain", she was legally dead.
But seeing that her heart is still beating, and that her lungs are moving up and down (thanks to the ventilator), and being able to touch her face, arms, and legs and feel that they are still warm (in my experience watching family members, this is particularly powerful) -- to her mother Jahi is still alive. As she told CNN:
"Her heart is still beating, so there is still life there."
As a matter of basic biological fact, there is still life there. Not in her brain, but in most if not all of the rest of her young body. As with other "brain dead" patients, as long as her heart is circulating oxygenated blood to her tissues, all of Jahi's other vital organs (including her heart, her lungs, her liver, and her kidneys) are likely not only "alive", but possibly in such good condition that they are ideal organs to use in transplantation for the benefit of others. Without the availability of these organs from patients on mechanical ventilators, who have been legally declared "brain dead", most of the thousands of heart, lung, and liver transplants done each year in the U.S. would not be possible. Many believe that that was a primary motivation for developing "brain death" criteria in the first place.
Biologically, Jahi's body is warm, she urinates and has bowel movements, and if given food (through a tube since she can't swallow without a functioning brain) her body digests it, and distributes the nutrition to literally trillions of living cells. Just not her roughly 100 billion brain cells (<1% of her body's total cells). Those are dead.
Even though Jahi herself, like all "brain dead" patients, has no biological possibility of consciousness, now or ever, her "life" has still clearly had profound, ongoing meaning to her family. One professor of bioethics commented bluntly about her family's views: "There is a word for this: crazy."
I'm not sure what he meant by "crazy". It is common for family to find it deeply meaningful to spend time with a loved one who is in a profound coma, with no consciousness, and even with zero possibility of ever regaining consciousness. When I see this in our ICU's, I don't usually see craziness, I see love. And I suspect that if any bioethics professor ever has a loved one in this condition, then it will not seem "crazy" to be at the bedside holding their loved one's still-warm hand, maybe even never wanting to let go
So with the hospital under a court order not to stop the ventilator, Jahi's family celebrated Christmas. As her mother remembers:
"It was beautiful, because I didn't think that it was going to happen...to have the whole family come...people brought food...It was a good feeling as a mother and as a family that I could spend Christmas with my child...People sent her gifts from all over the world, and we put them under her tree....I was really happy about that."
In what seems to me to be almost-Solomonic wisdom, the state judge allowed the hospital and its doctors to act on their belief that Jahi is dead by transferring her body to the state medical examiner -- though still attached to the functioning ventilator. The medical examiner then followed standard procedure in "releasing" the legally-dead body to the family, though again with the functioning ventilator still in place.
I do not know where Jahi -- or her "dead" body -- is today, but news reports suggest that her body is now being "fed". If so, then even though her brain is dead, that nutrition is helping keep the rest of the organs and cells in her body -- including her heart -- biologically alive, even if Jahi herself is legally "dead".
* * *
The one thing I am most sure about in this case is that it is far from as simple as many doctors, lawyers, and "bioethicists" seem to think, especially those who dismissed Jahi's parents' perspectives by labelling Jahi's body as a "corpse", with statements such as "There are no ethical issues in the care of someone who is brain-dead, because the patient is now a corpse", and "you can't...feed a corpse."
Whatever words one uses to describe Jahi's legal or biological status on December 25, 2012, the Christmas that Jahi's mother and her family spent with her -- or, if you prefer, with "her body" -- was clearly a profoundly more human and loving Christmas than they would have spent if it had been a typical "corpse" -- i.e. a body that is visibly lifeless, cold, and stiff, in rigor mortis.
I have no simple answers for cases like Jahi's. I hope her family is being helped to come to terms with the painful reality that she will never "wake up" -- not to open her Christmas presents the way her mother has said she hopes, and not to anything else. I hope that at some point she will have a burial, or perhaps a scattering of her ashes, that helps her family find peace.
In the meantime, wherever Jahi -- or her body -- is today, I hope it is a place that is as filled with love as the room her mother described on Christmas.
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About the authorLachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »
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