The absolute state of being dead is synonymous with the idea of medical death. The definition of being dead, as proposed by the US President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research set up by Ronald Reagan (1981), is when:
Death: Absolute State, Final Event and Process
The difficulty with the above definition is capturing the irreversible final moment of death. It is worth critically interrogating both clauses of the above definition.
Clause (1) does not accurately capture the timing of the final biological death event. That is to say, irreversible and irreparable damage to heart and lungs will quickly and inevitably lead to entire brain death, but it is not quite synonymous with that final event. There is a time interval in which the brain is dying because of lack of a supply of oxygen-rich blood to keep it alive, at which point the human brain is dying but not yet dead (Scarre 2007, p. 6).
Clause (2) points to the timing of the final event. The certitude around entire (whole) brain death follows from a clinical assessment of total brain failure. However, the assessment of total brain failure has courted controversy.
The neurologist Alan Shewmon is a leading critic of equating total brain failure with human death. Shewmon identified many cases of patients who were diagnosed with total brain failure that nevertheless ended up surviving. Shewmon collected 175 case reports of patients that had survived against the odds, and whose bodies had stabilised long after the period accounted for by current literature on ‘brain death’. The length of patient survival varied from a month to a year and even, in the exceptional Florida Boy Case, 14 years (Rubenstein 2009, pp. 37–38).
In certain cases, therefore, it may be possible to try to artificially sustain a body after so-called total brain failure has been diagnosed. As such, it is possible to distinguish total brain failure from chronic brain death.
Shewmon’s arguments have thrown significant doubt over associating death with total brain failure.
This is illustrated in the famous Florida Boy Case. The boy survived for 14 years in an Intensive Care Unit (ICU) after an initial diagnosis of total brain failure. Following his parents’ wishes, the boy was artificially ventilated, fed and hydrated in hospital, by which time his body had grown, recovered from wounds and even parts of his brain had become replaced ‘by ghost-like tissues’ (McMahan 2002, cited in Scarre 2007, p. 7).
The Florida Boy Case has shown that establishing death may be less about precise diagnosis of the brain state and more about understanding the resilience of the human organism as a whole. In other words, the Florida Boy’s resilience was tied up with what Shewmon calls the organism’s ability to function as an ‘emergent property of the whole’ (Rubenstein 2009, p. 38). This fits with what Aristotle calls ‘entelelchia’, his ancient term for the soul, which has biological connotations with what Joe Sachs has translated as the organism ‘being-at-work-to-stay-itself’ (cited in Rubenstein 2009, p. 41).
Chronic brain death, where a patient may continue to exist in a permanent vegetative state (PVS), is a notion that only shows up as mattering in the highly advanced technical environment of ICU where specialist clinicians can artificially hold medical death at bay. Arguably then a diagnosis of total brain failure (or indeed chronic brain failure) is:
…perfectly correlated with the permanent cessation of functioning of the organism as a whole because the brain is necessary for the functioning of the organism as a whole. It integrates, generates, interrelates, and controls complex bodily activities. A patient on a ventilator with a totally destroyed brain is merely a group of artificially maintained subsystems since the organism as whole has ceased to function. (Bernat, cited in Rubenstein 2009, p. 36)
To conclude, ‘life’ after extensive brain death is an ambiguous state, one where precise terms are necessary to establish what exactly a human life is constitutive of.
A philosopher that is clear about what bare life entails is Leon Kass. He describes life at its most basic as a ‘series of preconscious needs.’ From Leon Kass’s book The Hungry Soul (1994):
What moves an organism to feed is not merely the sensed and registered presence or absence of a certain chemical or edible being in its environment but the inner needy state of the organism, for which such an absence is a lack, an absence to be overcome and remedied… The organism would not ‘respond’ to perceived food ‘stimuli’ were it not … ‘appetitive’ being … internally ordered toward the necessary activities of self-nourishing. (Leon Kass, cited in Rubenstein 2009, p. 43)
As the Florida Boy Case illustrates, the organism as a whole retains a preconscious and ‘inner needy state’ for basic appetitive functions. That is, the need for air, hydration and nutrition. This inner state of neediness is met at the threshold of life in ICU, where the organism is not only maintained but even grows, adding to the illusion of recovery.
What and when is death here? It depends on one’s perspective of life.
From an understanding of bare life, the Florida Boy was a biologically living, growing organism with pre-conscious needs and an inner needy state. From the perspective of a living person, the Florida Boy is likely to have died well before his parents projected their hope on to his recovery.
To elucidate further, patients in the UK, who remain comatose and unresponsive and who have made no significant recovery after 12 months from a serious brain injury of this sort, are categorised as being in permanent vegetative state with a statistically improbable chance of recovery (http://patient.info/doctor/vegetative-states).
What is surprising in the Florida Boy Case is how he survived in ICU for 14 years. The ambiguity of his state of existence was probably obscured within the ICU environ. Steps may have been taken to establish how he may have fared without a ventilator, establishing whether or not the boy’s brain had the necessary integrative function to sustain autonomous biological life beyond life support. This throws up another distinction: between bare life in the technological setting of intensive care and the bare life of a deeply brain-damaged individual who may survive for years afterwards with constant care from family and social care professionals.
In the case of bare life the patient can be described as already being in a state of ‘techno-death’, where machines, like ventilators, take over from biological sub-systems that have permanently and irreversibly failed.
Some thinkers regard the neurological standard of whole-brain death to be unnecessarily restrictive (e.g., Green and Wikler 1980). Even if a body could survive technologically unaided, ‘neocortical’ (or ‘higher’ brain) death may have occurred anyway, meaning that what remains is a severely mentally and physically disabled individual whose personhood is barely recognisable.
Personhood is characterised by having the mental capacity to be self-aware, communicate with others, and self-create a meaningful life. Once that is gone it is difficult to relate to that human being in the same way. The person who one may once have known has died, presenting the challenge of forming an altogether different relationship with another being. Again the Florida Boy provides an example: while his autobiographical life as a person was over, destroying who he had been, his biographical life was sustained through the narratives of hope his family harboured in his recovery.
