There are well over 100,000 diagnoses and conditions in the International Classification of Diseases used in the medical field. Moreover, there is a myriad of ethical dilemmas one can face in healthcare. Of all the medical issues and moral conundrums in medicine, you would think that the one area where there poses little controversy would be the concept of death. You would be wrong!
The Beginning of the Jahi McMath Story
I recently posted on the tragic events surrounding the Jahi McMath case (here). Three days after undergoing a routine tonsillectomy and adenoidectomy, 14-year-old Jahi McMath was declared dead by neurological criteria. Two independent tests confirmed the results. When you go into the hospital and have any procedure, no matter how routine it may be, the physician always informs you that there is a remote possibility that something could go wrong. Unfortunately for Jahi, something went wrong. She suffered a cardiac arrest and a severe anoxic brain injury. Such a tragedy, such a loss. That was in December 2013. But that was not the end of the story. It was just the beginning. There are two criteria used to determine if someone has passed away. The first is death by cardiac death (DCD), i.e., your heart stops functioning. The second is death by neurological criteria (DNC), i.e., your brain has the lost the ability to function. Jahi was declared dead by DNC. All fifty states accept both criteria, but only New Jersey allows a family to refuse to accept DNC. That is the road the McMath family took. They moved from California to New Jersey where a mechanical ventilator sustained Jahi’s heart and lungs.
The Ethical Wake of Mechanical Ventilation
The mechanical ventilator is one of the most amazing technological advances in medical history. Vents have saved countless lives, from the first tank respirator produced in 1832, to the “iron lung” ventilators used during the polio epidemic in the 1920s and 1930s, and to the modern positive pressure ventilators we use today. They have treated patients with an array of conditions from Polio to Emphysema. But they have also created artificial conditions in a small population of people. Ventilators can assist compromised, weakened lungs or take the place of chronic, diseased lungs. They can also substitute for a cardiopulmonary system that receives no signal from the brain to function. A new type of patient has emerged because of this technology: one who has no functioning brain, no consciousness but has functioning heart and lungs. If someone suffers a catastrophic brain injury, the brain no longer sends the appropriate signals to the rest of the body to maintain its function. Thus, all of the rest of the body’s organs fail. That is if something doesn’t step in and take their place. Enter the mechanical ventilator. With proper oxygenation and ventilation, the heart continues to pump, and the rest of the body’s organs and tissue can maintain homeostasis, to a point. Severe brain injuries are complex problems. The severity occurs on a spectrum. People can be in a minimally conscious state, a coma, or in a necrotic “brain death” state as a result of their injuries. Interestingly, the brain can heal itself to a certain extent. As a result, some patients have moved from one state to another. But the more severe the injury, the less likely of any recovery.
Drawing The Proverbial Line: Harvard 1968
I recently attended the annual Harvard Bioethics Conference in Boston which had as its theme: Defining Death: Organ transplantation and the 50-year legacy of the Harvard report on brain death. It was in 1968 when an ad-hoc committee at Harvard proposed including neurological criteria as another basis for determining death. The impetus for such a proposal remains somewhat controversial. Some suggest that adding neurological criteria to diagnosing brain death was to facilitate organ transplantation. Undoubtedly, this addition would significantly affect organ transplantation but according to Gary Belkin the primary justification was to add another criterion to respond to the hopeless cases of those in an “irreversible coma.” A physician’s priority is not to harm, yet patients could now exist in a perpetual state of unconsciousness because of mechanical ventilation. There needed to be a line that separated acceptable medical practice and unacceptable experimentation. This “brain death line” became that division.
The Ending of the Jahi McMath Story
A mechanical ventilator and tube feedings sustained Jahi McMath for 4 ½ years. She had at least three menstrual cycles. She physically grew, and she had some volitional movement. As a result, in 2017 Dr. Alan Shewmon, Professor Emeritus of Pediatrics and Neurology at UCLA declared that Jahi fulfilled the requirements of being in a minimally conscious state. In other words, in 2013 Jahi met the standards for being declared dead by neurological criteria but in 2017 she did not. Thus, technically, she was “dead,” and now she was “alive.” The McMath family sought litigation attacking the legitimacy of the DNC criteria. The courts would decide whether Jahi was alive or dead. If she was declared alive, it would be the first case to reverse a death declaration. A judge approved, and the case was scheduled to begin in February 2019. But the case will not take place.
Toward the end of June 2018, Jahi McMath was removed from the ventilator in a New Jersey hospital after suffering what seems to be massive blood loss following exploratory surgery. Staff attempted to resuscitate Jahi but were unsuccessful. She was declared dead by DCD on June 22, 2018. After reflecting on her rationale for moving her daughter to New Jersey, Jahi’s mother stated, “My daughter was not brain dead or any other kind of dead…”
The Sad Irony of Jahi McMath
The 1968 Harvard committee’s proposal of adding neurological criteria to a diagnosis of death was to prevent unnecessary harm to an artificial group of patients and their families created by mechanical ventilation. Unfortunately, that is what happened to Jahi McMath and her family. They all suffered from countless sleepless nights, anguish, guilt, and the millions of dollars spent on sustaining Jahi after a horrible tragedy. This situation was what the Harvard Committee wished to avoid. Almost five years later, the family can now begin to grieve the loss of Jahi.
The McMath tragedy has taught us many things. First, the brain is complex and trying to draw a black and white “legally dead” line in a spectrum of color is difficult. But the line is useful. It is there, in part, to prevent unnecessary suffering. Second, the term “brain dead” is confusing, and we should consider dropping the term. As Alexander Capron eloquently stated at the Harvard Bioethics Conference, “Organs do not die, they cease to function. People die.” Third, the McMath family had every right to refuse a DNC diagnosis. Death involves a subjective, personal philosophical viewpoint and a family’s personal beliefs should be considered along with the medical and legal declarations. However, families need to be fully aware of the ramifications of their decisions if they choose to reject a medical diagnosis, including the physical, emotional, spiritual, and financial costs. Finally, the McMath case highlights the importance of approaching such cases with compassion and patience. Because our tasks often become routine, many of us in medicine turn on automatic mode and go through our day oblivious to the fact that behind every number and intervention is a person. Just a few months prior to removing Jahi from the vent, Jahi’s grandmother stated, “…would we have fought so hard had the hospital been more compassionate?” May we all heed the profound message in that question.
- Aviv, Rachel, What Does It Mean to Die? Annals of Medicine, February 5, 2018.
- Belkin, Gary S., Death Before Dying, Oxford University Press, New York, 2014.
- Schmidt, Samantha, “Jahi McMath, the California Girl in Life-Support Controversy Is Now Dead,” Washington Post, June 29, 2018.
- Tobin, Martin J. ed, Principles and Practice of Mechanical Ventilation, McGraw-Hill Companies, Inc, 2013.