Stayin’ Alive: Dancing with Death
BY SHIVIKA GUPTA
Party 1: Alfie Evans, a 23-month-old child, suffering from an undetermined degenerative neurological condition, had been in a coma since December 2016.
Party 2: Alder Hey Children’s Hospital, which had identified “catastrophic” destruction of Alfie’s brain tissue, argued that it was not only unlawful to continue life-prolonging treatment, but futile and inhumane.
Party 3: Alfie’s parents, who wished to continue ventilator support, in the hopes of further treatment and recovery.
Party 4: The High Court of the United Kingdom, which ruled in favour of the hospital, mandating withdrawal of life-sustaining ventilation and intubation.
Resolution: Pursuant to the court order, Alfie’s life support was switched off in April 2018.
This recent UK case shines a spotlight on the curious concept of brain death and the difficulty of balancing the various competing interests in brain death cases. Some may be familiar with the concept of the “persistent vegetative state” – medical patients who, usually subsequent to a severe brain injury, lose the areas of the brain responsible for conscious awareness, but maintain their own breathing and basic metabolic functions. Despite the loss of capacity for consciousness, we consider these patients to be “alive”. For patients in a persistent vegetative state, in the absence of an advanced care directive where the patient has outlined their preferred course of life, families may opt to withdraw or continue any aids which sustain life.
This stands in contrast with brain dead patients, who, despite exhibiting signs of “life”, such as a beating heart and normal colouration of skin, are unable to breathe independently of respiratory support, and are therefore considered legally “dead”. Brain death seems to exist outside the certain binary of “life” and “death”, as patients sustained on life support are suspended in limbo. Family members may insist that they are alive, while medical professionals declare that they are dead. Sitting at the intersection of neuroscience, moral philosophy, and the law, brain death encourages serious contemplation of how we define death.
The criteria used to diagnose death have evolved over time. Historically, simple observation of signs such as rigor mortis, decomposition, or massive physical injury indicated the end of life. Eventually, the medically accepted definition evolved into cardio-respiratory failure (where the heart and lungs no longer sustain breathing or the circulation of blood). However, as technology evolved to create machines capable of ‘cheating death’ through artificially supported breathing and circulation, doctors could no longer diagnose death exclusively using these standards. As an increasing number of permanently comatose people were surviving on ventilation alone, a new definition was constructed.
A 1968 report of the Harvard Medical School  set out a checklist of criteria outlining a new way to die: brain death, the essential factor being irreversible damage to the entire brain, including the brain stem. The brain stem is where our respiratory drive originates, meaning that our lungs will only breathe if our brainstem is functioning. Thus, despite a beating heart (which can function independently of the brainstem) and continued breathing (albeit artificially with the aid of a ventilator), death of the brainstem means a loss of capacity to breathe, and was deemed synonymous with death of the human body as a whole. The long and rigorous list of necessary prerequisites published in the 1968 report has been adopted in most countries today as the criteria for brain death. As a consequence of the adoption of brain death as a form of death, one well-established opinion is that any definition of death will share two major criteria: the irreversible loss of capacity for consciousness, and the irreversible loss of capacity to breathe. 
Given this new definition of “brain death”, the question emerges of whether Alder Hey Hospital was justified in fighting against Alfie’s parents’ decision to try to prolong his ventilation. Legally, the answer is yes: there is an established principle that a Court can override parents’ decisions regarding their children. This is most commonly applied where parents refuse the administration of live-saving medical treatment to their children (think Jehovah’s Witnesses refusing emergency blood transfusions). The court can, in its parens patriae jurisdiction, decide what is in the best interests of the child if the parents, influenced by, for example, their grief, may make a decision which favours other interests. The justification is that power is being exercised on behalf of the community, as the community is invested in the welfare of children.
The use of this power in brain death contexts is much less ethically than legally straight-forward. It is harder to convince the family of a child who appears healthy and “alive” that the removal of ventilation, which would render them visibly lifeless and “dead”, is in fact in that child’s best interests. It would seem more acceptable that a court can intervene in situations where parents are actively harming their child’s health. Keeping a child on life support, however, doesn’t inflict the same type of deliberate harm. It is certainly a futile act and conceptually inhumane, but it doesn’t appear actively harmful.
Therefore, when examining the situation from the parents’ perspective, it is understandable that they would find it difficult to accept the inhumanity of prolonged life support, despite being told that there is no chance of their child recovering consciousness. Brain dead people can progress through puberty, and some have even delivered children. Seeing a loved one still breathing, seemingly “living” for years in this way, combined with the fact that there is “symbolic and emotional significance of providing nourishment” , explains why so many families find it difficult to believe the patient is “dead” in the traditional conception and agree to the removal of life support. In fact, 20% of families of brain dead patients had doubts regarding whether their relative was actually dead, despite being given a full explanation of the diagnosis. It represents a sort of cognitive dissonance, in which a family can conceptualise death in its traditional form but continue to emotionally recognise life.
It is likely that many of these families are confusing brain death with coma or persistent vegetative state, which are themselves often misunderstood. Drawing upon popular representations of comas, many people are misled into thinking there is greater chance of recovery than in reality. An analysis of “soap opera comas” showed an 89% recovery rate contrasting with real figures of less than 50% survival and 10% full recovery. To overcome this gap in understanding, the best solution is to be compassionate and give the families a chance to grieve and say their goodbyes, which is often the justification for maintaining life support for a braindead patient in the short term.
The actual diagnosis of brain death can pose some inconsistencies, which can further the confusion and disorientation of families. Some brain-dead patients display ongoing motor functionality, for example moving their fingers or limbs. Generally, these movements originate in the spinal cord as reflex actions, not demonstrating consciousness in response to external stimuli. Claims from families that this proves their loved one is trying to “communicate” in response to commands are usually dismissed as being coincidental, or as the family reading meaning into these actions in their process of grieving. However, there are some rare cases of brain-dead patients regaining spontaneous breathing. Further, some cases have suggested the brain dead person in fact comprehends environmental information. Advanced neuroimaging techniques analysing these reflex movements, ostensibly performed in response to specific commands, open the controversial possibility that some of these patients are perhaps experiencing some level of consciousness and responding to their environment, contrary to the established definition of brain death which states an “irreversible loss of capacity for consciousness”. On the other hand, there are no documented cases of a brain dead person subsequently regaining full and normal brain function. 
Thus the question of sustained life support in brain death could, feasibly, shift from the support of a “dead” body to the support of a potentially partially conscious person. Yet even in this hypothetical case, given that an individual who is unable to communicate, or where meaningful communication is only perceptible through fMRI, would require a great burden of therapy, it is appropriate to consider whether prolonging life is in the patient’s best interest even in the presence of a degree of conscious awareness.
A further question can be raised: if Alfie’s parents were to pay for the costs of ventilation from their own pockets without drawing from public spending, would they be doing any harm? Most likely it would set a contentious precedent allowing families to rely on ventilation for years. This isn’t to stoke the controversial pro-life and deeply religious counter-position, which regards the end of life when the heart stops beating rather than when brain function ceases (the Alfie Evans case drew sympathies from the Pope himself). It rather indicates that the concept of death is not concrete across all cultures – there is a religious exception in two US states, and some countries including Japan, which allow ongoing ventilation for living bodies with dead brains. It would seem that the inclusion of brain death is by Western medical consensus, rather than universal agreement. Given the ongoing debate around brain death, and that death is a hugely personal experience, why shouldn’t families be allowed to choose if their choice has no disproportionate burden on public resources? In comas with very low chances of recovery, families are given the choice. It is certainly futile but arguably does not actively harm the individual.
The greatest concern about making this option available would be the negative impacts on organ donation. Defining brain death as the isolated loss of brain function has allowed the expansion of transplant programs by widening the ambit of patients considered dead. The medical profession has a very valid vested interest, in trying to save as many lives as possible, to declare patients brain dead such that their organs can be used for transplantation. Practically, allowing families to maintain ventilation for their relative would be unlikely to have a negative impact in Australia, because as the legal position currently stands, and similarly in the UK as seen in Alfie’s case, the court would intervene to order removal of life support if it wasn’t in the patients best interests. However, it would likely instigate unnecessarily taxing legal battles. In a society where there is increasing need for vital organ transplantation, recognition of brain death is a necessary step to allow this to take place.
Arguably the most pertinent ethical consideration relates to how we value human consciousness. Is consciousness a requirement for living? Does a lack of meaningful environmental interaction equate to a less meaningful life? The current definition of death suggests so, but this isn’t a shocking position. In all senses, the “individual” is gone from the body, even if the vital functions can persist with assistance. If an individual loses their ability to interact with the world and has no hope of recovery, they are not really “alive” in the human sense of learning, growing, feeling, and flourishing. As a tenuous analogy, although we recognise plants and trees as being carrying biological life, we perceive a lack of consciousness demonstrates there is no meaningful life. Derogatory references to comatose patients as “vegetables” also fit into this analogy. The existence of consciousness is a boundary in a hierarchy relating to what we deem “valuable” life. This gets to the heart of the definition of human death as a cessation of breathing and a cessation of conscious experience.
Clearly many families would find themselves in a position similar to Alfie’s parents, disquieted by the medical reality of death conflicting with their emotional belief of ongoing life. There is a definite medical grey area, reflected in discrepancies in criteria which may miss patients with residual neurological function, and in clinical cases of patients even marginally “recovering” from brain death. There are also competing interests at stake – those of families wishing to prolong their loved one’s life for as long as possible, and that of doctors and society wishing to save others and to be cost efficient with money and resources. But is it fair to decide for another the point at which life becomes meaningless? A deeply personal experience such as this arguably calls for greater autonomy.
 Fins, J. J. (2011). Neuroethics, Neuroimaging, and Disorders of Consciousness: Promise or Peril? Transactions of the American Clinical and Climatological Association, 122, 336–346.
 Kerridge, I., Lowe, M., and Stewart, C. (2013) “Ethics and Law for the Health Professions” Federation Press, Sydney, Australia, p754.
 Ad Hoc Committee of the Harvard Medical School (1968) ‘A Definition of Irreversible Coma’ Journal of the American Medical Association 205, 337–40.
 D Gardiner, S Shemie et al (2012) ‘International Perspective on the Diagnosis of Death’. British Journal of Anaesthesia 108(Suppl1) i14–i28.
 A braindead pregnant woman on a ventilator for months later gave birth to healthy children: DJ Powner and IM Bernstein (2003) ‘Extended Somatic Support for Pregnant Women after Brain Death’ Critical Care Medicine 31(4) 1241–9.
 R Dresser and E Boisaubim (1985) ‘Ethics, Law and Nutritional Support’. Archives of Internal Medicine 145(1) 122–4.
 I Pearson (1995) ‘Brain Death and Organ Donation’ Anaesthesia Intensive Care 23(1) 11–13.
 D Cassarett et al (2005) ‘Epidemiology and Prognosis of Coma in Daytime Television Dramas’ British Medical Journal 331 (7531) 1537
 Aviv, R. (2018) “What Does it Mean to Die?” New Yorker, New York, United States. Retrieved 10th June 2018, available from: https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die
 Australia and New Zealand Intensive Care Society (2010) The ANZICS Statement on Death and Organ Donation, Melbourne, Australia
Stephan House’s family’s GoFundMe: https://www.gofundme.com/tx-bomb-leaves-8yr-old-daughter-wo
Draylen Mason’s family’s YouCaring: https://www.youcaring.com/joneswilsonfamily-1129040