“Live, Love, Laugh”. What is the one aspect of yourself that you cannot truly be alive without? Is it your physical body, your consciousness, or some other part of your being?
With our incredible advances in science and technology, the boundaries between what we traditionally like to think of as life and death are blurring. Our modern intensive care units are able to artificially replace the role that our bodies and brains play in maintaining our biological bodily functions through life support machines and medications. Technology such as extracorporeal membrane oxygenation can even perform, and essentially bypass, the roles of “vital” organs such as the lungs and heart.
Just because a patient is on life-support though, does not mean that they cannot be declared “dead”. The concept of brain death, or ‘death by neurological criteria’, is based on the idea that for someone to qualify as a ‘living organism’, they should have a drive to interact with the surrounding world [1]. This isn’t a surprising qualifier - even the smallest sprout will respond to light through their growth patterns. For humans, however, this criteria manifests as our capacity to breathe and retain some level of consciousness. This of course requires an adequately functioning brain.
But is it as clear cut as it sounds? As illustrated by the complicated case of Jahi McMath, not always.
The Case of Jahi McMath
In 2013, a legal case was filed in the United States following a dispute between medical staff at a Californian hospital and the family of a 13-year-old patient who had been diagnosed as being brain dead [2].
Her family disagreed with the hospital’s refusal for further life support and transported their daughter to New Jersey, where differences in legislature invalidated the diagnosis of brain death on the grounds that it conflicted with the personal and religious beliefs of the family. She was maintained on life support, with a ventilator to breathe and tube feeding for nutrition. During this time, her family insisted that their daughter was responsive to commands, even consulting a medical specialist who concluded that she may actually be in a “minimally conscious state”.
So why did specialists disagree with the diagnosis of brain death in this instance?
Developing a legal diagnosis of brain death forces clinicians to draw a sharp distinction between life and death. But in reality, brain injury actually occurs on a spectrum of severity and over time, some patients in a permanently vegetative state may improve whilst others deteriorate [3]. In this case, if the evidence holds true, it’s possible that the patient’s condition improved – not enough to adequately recover her brain function or change her prognosis, but just enough that, at times, she no longer fit the legal definition of brain death.
Her life support would continue to be maintained until 2018, when she developed liver failure and went into cardiac arrest.
Brain Death in Medical Ethics
These cases create complex situations within medical ethics. There are concerns that it could set a problematic precedent, raising issues about fair treatment and justice within healthcare. Many feel that allowing families with the financial means to maintain life support for their “deceased” loved ones will increase the disparities in healthcare access which exist across economic classes.
In contrast, others believe that the current criteria to diagnose brain death was morally flawed from its creation. Whilst these arguments do stem from a social and cultural perspective rather than a biological one, it is not to say they are invalid. After all, as loved ones grieve, it’s often hope rather than science and biology that they turn to - and that’s completely understandable.
As emerging technologies rapidly delineate the boundaries of resuscitation and life support in critical care, it highlights that the philosophical and moral views of our society are slower to shift and adapt. Although the biological grey area between life and death may complicate medical judgement, what is often more important to us during those stressful moments are our personal beliefs and attitudes towards death, which are often as varied as our approach to life itself. That being said, the ones who benefit most from extended life-support tend not to be the patient themselves, but their grieving family as they come to terms with the loss of a loved one in unfortunate circumstances.
Ultimately, the decision depends on the patients’ perceived quality of life - after all, if you’re not laughing and loving, are you really living?
References
[1] The President's Council on Bioethics. (2008). Controversies in the Determination of Death: A White Paper by the President's Council on Bioethics. Retrieved from Washington: https://bioethicsarchive.georgetown.edu/pcbe/reports/death/. Accessed 14 November 2020.
[2]Aviv, R. (2018). What Does It Mean to Die? The New Yorker. Retrieved from https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die
[3] Truog, R. D. (2018). Lessons from the Case of Jahi McMath. Hastings Center Report, 48(S4), S70-S73. doi: https://doi.org/10.1002/hast.961