'...not just the premier
Christian bioethics institute in Britain,
but one of the finest in the
world, Christian or secular'
Most Rev. Anthony Fisher O.P., Auxiliary Bishop of Sydney
The UK Definition
of Death
David Albert Jones
[1999]
'Nor can we
remain silent in the face of other more furtive, but no less serious and real,
forms of euthanasia. These could occur for example when, in order to increase
the availability of organs for transplants, organs are removed without
respecting objective
and adequate criteria which verify the death of the donor.'
Evangelium Vitae 15
The definition of death
Sometimes it will be obvious to any reasonable observer that someone
is dead, or alternatively, that someone is still alive. Someone who is breathing
and talking and walking around is obviously alive. Someone whose body is
rotting away and hanging off the bones is obviously dead. However there
are some cases, perhaps many cases, where it will not be obvious to an unqualified
layman whether someone is alive or dead. In these cases it is the decision
of competent physicians that decides the issue. In the UK the independent
judgement of two physicians is required before someone can be declared dead.
Thus, the judgement of the moment of death in the particular case
is obviously a clinical one.
However it is possible to push the question back a stage and ask by what
criteria the doctors are to make their decisions. Who decides what
are general sufficient conditions to be fulfilled before someone is declared
to be dead? This is not simply a matter to be left up to individual practitioners,
but seems to demand some generally and publicly agreed standards against
which individual judgements can be tested. Here it is not the individual
physicians but the professional body as a whole that should, and has, laid
down procedures to be followed, and criteria to be fulfilled before someone
is declared dead. Thus, the BMA has acted responsibly in laying down guidelines
for the diagnosis of death in ordinary and in extraordinary circumstances.
Yet, behind questions of the particular judgement and agreed criteria
there is a further question to be asked. This is the broader question of
the definition of death that is embodied in these criteria: With
any injury, disease or syndrome a doctor's judgement is measured
against general and agreed criteria of clinical judgement. These
criteria concern what effects are symptomatic of what diseases. Fever may
point to infection, but it may be caused by something else; pain may be
caused by an injury, but injuries may have been sustained without the same
telltale pain. It requires some understanding of the underlying state
and the cause of the trouble if correct criteria are to be established.
In the area of human death the increasing complexity of the cases, which
medical technology has itself produced (because of the development of intensive
care medicine), has lead to questions not only at the level of particular
cases or agreed criteria, but questions about the very
meaning of human death. Death is not just another disease that can be
specified, analysed, and catalogued as viral or bacterial, infectious or
auto-immune. Death is the final cessation of life. Thus defining death requires
more than medical and technical expertise: It requires also some agreed
understanding of what is constitutive of human life, and what it is that
must be absent before the person can be said to be dead. This is not a simple
worry about misdiagnosis (as though everyone agreed about what it
is that is to be diagnosed and disagreed only about the safety of present
criteria). One must first ask the question about what it is
that is supposed to be being diagnosed. For if there is confusion at this
level, there will be confusion all the way along the line. To gain an understanding
of this question, it is helpful to trace the history of the development
of definitions of death in the UK.
Development of the definition of death in the
UK
Before the 1960s human death was primarily understood and diagnosed by
cardio- pulmonary criteria. The irreversible cessation of breathing
and heartbeat, of the functioning of the lungs and heart, constituted the
death of the person as a whole. This seemed quite obvious, for the heart
and the lungs comprise the delivery system necessary for the rest of the
body to receive oxygenated blood. Without functioning heart and lungs the
rest of the body could not survive. A person might die from being crushed
or incinerated so that the whole body was destroyed together, but if death
were slow and lingering the final moment was determined by the fact
that breathing and heartbeat could no longer be maintained. For generations
of doctors the two most significant signs of life were heartbeat (and so
pulse) and breathing. On the basis of the confirmed and persistent absence
of these vital signs, the person was to be declared dead.
This longstanding definition of death was critically undermined by developments
in medical technology. First, the introduction of assisted ventilation and
heart-bypass machines showed that the biological functions of lung and heart
could be maintained artificially. The delivery system could be replaced,
and thus they could no longer be considered constitutive of human
life. Then in 1967 the first human heart transplant operation was successfully
performed. If the heart could be bypassed or even entirely replaced then
it could not contain the essence of the human person. Every organ seemed
to be replaceable in this way apart from one, the human brain. Your heart
can die without you dying, but it would seem that, if your brain dies, you
die.
Assisted ventilation had altered people's understanding of death but
also it produced a new clinical condition that could not have been
observed before. This occurred in several patients who had suffered massive
head trauma (due to external or internal causes) but who were sustained
in intensive care. Some such patients were discovered to have lost all
responsiveness, even the ability to breathe spontaneously. This very severe
and short-lived syndrome was first investigated in France where it was called
coma depasse. It only existed under conditions of assisted ventilation,
for without such assistance the patient could not breathe and the rest of
the system soon collapsed. In the UK this clinical syndrome was identified
with the complete functional destruction of the brain, hence it was called
brain death.
The first pronouncement from the British medical establishment on brain
death was made in 1976 in a paper of the Conference of the Medical Royal
Colleges entitled "Diagnosis of brain death". This document describes
the procedures for the diagnosis and asserts that for a diagnosis of brain
death what is required is the irreversible loss of all function of the brainstem
[whence the term 'brainstem death' was coined]. However, nowhere in this
document is brain death equated with the death of the patient. Rather, brain
death is described as "accepted as being sufficient to distinguish
between those patients who retain the functional capacity to have a chance
of even partial recovery from those in whom no such possibility exists."
In other words, a diagnosis of brain death implies that the patient will
certainly not recover, not that the patient is dead already.
A second pronouncement was published in 1979, also from the Conference
of the Medical Royal Colleges, and is entitled "Diagnosis of death"
[note the shift in title]. No change was made to the diagnostic protocol,
but now it is stated that: "brain death represents the stage at which
a patient becomes truly dead." No explanation is given for this massive
leap in interpretation. All that is said is that brain death is the point
at which "all functions of the brain have permanently and irreversibly
ceased."
During the 1980s and 1990s significant medical evidence has mounted against
the claim that brainstem death, as diagnosed by UK criteria, is the point
at which "all functions of the brain have permanently and irreversibly
ceased." In the face of medical uncertainty, and the consistent confusion
over why brain death should be identified with the death of the patient,
a third document was published in 1995. This appeared in the Journal of
the Royal College of Physicians, and is entitled "Criteria for the
diagnosis of brain stem death". This document encourages the use of
the more 'correct' term, 'brainstem death' rather than 'brain death' and,
for the first time, attempts to give a definition of death that will
explain why brain death implies the death of the patient.
'It is suggested that 'irreversible loss of
the capacity for consciousness, combined with irreversible loss of the capacity
to breathe' should be regarded as the definition of death'
While this definition seems curiously ad
hoc, it is certainly helpful in making explicit the definition of death
that underlies the present criteria. However, before analysing this
proposed definition, it would be useful to examine the divergent views that
underlie the present practical consensus.
Practical pressures
The acceptance of the equivalence of brain death with the death of the
person has not been made in a vacuum. Various practical pressures have also
shaped this consensus. Two are most prominent [Younger (1992), McCullagh
(1993)]. First a declaration of death can allow costly intensive care to
be withdrawn. Perhaps there are other circumstances that would allow medical
support to be withdrawn, but none are so clear and free from ethical difficulties
as the fact that the patient is dead!
The second, and without doubt the major factor behind the political acceptance
of brain death as death, is the development of transplant medicine.
Transplant techniques require a source of donor organs in good condition.
The organs must be alive even if the donor is dead. Traditional moral and
legal norms have only allowed the taking of organs from live donors if the
process of donation did not seriously harm the donor. Transplant teams have
therefore come to rely heavily on post mortem organ retrieval. So
as to obtain organs in good condition, the organs need to be 'harvested'
as soon as possible after death. If brain death is equivalent to death then
surgeons can remove organs while the heart is still beating and the organs
are still perfused with oxygenated blood. Many sorts of transplantation
are only possible because organs can be taken in this way. The great rise
of transplant medicine has, then, been wholly dependent upon organ harvesting
from so called 'beating-heart cadavers', that is, patients who are
determined to be dead on the basis of brain death criteria.
These two practical pressures have ensured a consensus as to what may
be done with patients declared to be brain dead. However, there is in fact
no such consensus as to why brain dead patients can be treated as
dead. The 1976 declaration on the diagnosis of brain death did not
describe a brain dead patient as being actually dead, but brain death
was thought a reliable test for hopeless prognosis and thus for the
removal of unnecessary treatment. Many in the profession still talk and
act as though the essential question were the one of prognosis. If brain
dead patients have no hope of recovery then, seemingly, medicine can do
them no good, and therefore removal of their organs can do them no harm.
The debate about brain death often focuses narrowly on recovery. The latest
official document on brain death continues a long line in repeating that
"Even if ventilation is continued, both adults and children will suffer
cessation of heart beat within a few days, very occasionally a few weeks."
Even if this assertion were true, and it is not incontrovertible, this does
not resolve the question of the status of those patients during those days
or weeks. Certain prognosis is not the same as present status. Certainly-dying-in-days-
or-weeks is not the same as dead!
Perhaps it is thought that patients who are unconscious and who are dying
are not significantly harmed by having their life shortened, while the recipient
is helped enormously. A survey among healthcare professionals in the USA
found almost a third of respondents thought this was the reason why brain
dead patients were counted as being dead [Younger (1989)]. It seems likely
that many people in the UK, even within the medical profession, also think
in this way. This contributes to the appearance of a consensus, but it is
a fragile one. How should we treat patients who are certainly dying but
who are not unconscious? If someone who is dying wishes to donate his organs,
why could they not be harvested before his death? [For otherwise it might
be impossible to retrieve his major organs.] How should we treat patients
who are unconscious but who are not dying, like those in a so-called 'persistent
vegetative state'? Could they be used for their organs?
Whatever our answers to these questions it is clear that they take us
far away from the simple identification of brain death with death itself.
These further questions are closely linked to support for euthanasia [explicit
in Singer (1995)], which again is an issue that needs to be examined explicitly
and publicly and not simply taken for granted. Even if this utilitarian
mindset does exist within the medical profession in the UK, which one hopes
is rarely the case, it is not the official rationale for identifying
brain death with death. It is here made explicit only so that it can be
set aside. The medical profession clearly thinks that brain dead patients
are actually and truly dead, not just 'as good as dead'.
Personal death
There is however a further confusion that is much more evident in the
official and unofficial statements of the British medical profession on
this issue. The profession is confused as to whether brain death is thought
of as death because it implies the death of the body as a whole,
or whether brain-death is thought of as death because it signals the irreversible
end of mental life.
On the one hand it has been argued that the brain is the organ that integrates
and organises the rest of the body. So, it is argued, when the brain is
completely dead, the body has no centre and cannot be thought of as a living
organism. The organs may still be alive but the system as a whole is defunct
and only the continual support of artificial ventilation gives the temporary
appearance of continued life. In reality the body is dead.
This argument has the great benefit of keeping the traditional account
of death: death is the death of the body as a whole. It explains why brain
death can be thought of as death, and does not involve any new and intractable
ethical problems - like those of euthanasia. However, this approach, which
is the standard approach in the USA [Presidents Commission (1981), Lamb
(1985), (1996)] and has been used very widely in this country, suffers from
empirical counter- evidence. First it is not clear that, in the syndrome
usually diagnosed as brain death, the whole brain is entirely
destroyed. Residual hormonal function, maintenance of blood pressure and
the presence of certain reflexes, as well as the presence, in some cases,
of measurable electrical activity in the brain, particularly in response
to stimuli, all cast doubt of the supposedly 'total' character of brain
death [McCullagh (1993), Byrne (1993), Kaukinen (1995)]. Most strikingly,
the beating-heart cadaver often has to be anaesthetised, or paralysed,
to prevent it reacting to the operation; otherwise blood pressure sometimes
rises dramatically when the incision is first made [Evans (1989)]. The supposition
that the body cannot maintain itself as a system without a functioning brain
is also one that is open to question. There have been cases, particularly
among children, where brain dead patients have been 'maintained' for many
weeks. The continued functioning of the body as a whole - blood flow, metabolism,
body heat, blood pressure, growth, healing - is evidence that the body is
not dead [Seifert (1989), Jones (1995), Shewmon (1997), cf. Jonas (1974)].
For such reasons many people, again including medical professionals, prefer
to believe that what is significant is not the death of the body, but the
'death of the person' [Gillon (1990), Gillet (1990), Lizza (1993)].
The complete functional destruction of the brain cuts the person off
from all personal life and consciousness, not temporarily but permanently.
What is most characteristic of human life - personal interaction - is now
impossible. It seems that whatever we wish to say about the continued sustaining
of the body, the person is 'gone'. The only thing that stops persistently
'vegetative' patients from being defined as brain dead is the greater possibility
of recovery or of misdiagnosis. PVS is a less reliable diagnosis than brain
death.
However, while this solution [explicitly proposed as early as Beecher
(1968)] has the virtues of being clear and of side stepping the empirical
evidence for continued biological life for the body-as-a-whole, it
represents a radically new definition of what constitutes human death. The
human being is no longer seen as a living bodily organism, as a rational
animal, but rather as a consciousness, a res cogitans. So
being human and a living organism is not enough to qualify as being a person.
It is also necessary to be able to demonstrate consciousness. This
is presumably because it is our rational, linguistic abilities that distinguish
us from other animals. But, in that case, human beings who do not possess
the ability to communicate linguistically, such as babies and the severely
mentally handicapped, should also be excluded as non-persons. Life is no
longer defined as human bodily life, and death is no longer defined as human
bodily death, but extra qualifications are now being demanded. This attitude
relies at some level on a dualistic separation of the human person
from the bodily animal. While this idea appeals to a sort of popular philosophy,
or popular religious separation of body and soul, in fact there are strong
philosophical and theological arguments against this sort of dualism [Braine
(1992), Kerr (1997)]. However we resolve the question, it is clear that
it is not simply a medical matter or an uncontroversial piece of 'common
sense'. Rather, it is a subtle conceptual or, if you like, metaphysical,
argument and one that impinges on the traditional medical and legal understanding
of death.
An agreed UK definition of death
In this context one can see what led to the curious and ad hoc
1995 proposal for a definition of death. On the one hand brainstem death
as it is diagnosed in the UK clearly does not exclude all bodily functions.
It excludes many but not all. Thus one basic vital function, the ability
to breathe spontaneously, has been picked out as somehow the 'essential'
sign of the life of the body. However, lack of spontaneous breathing on
its own is clearly insufficient on its own, for it is possible to be dependent
on a ventilator while still being conscious! So breathing and consciousness
are just put side by side as two signs of life, either of which is enough
to count in favour of still being alive. But why just these two signs of
life? Why is breathing so much more important than heartbeat, body heat
or blood pressure? There is no convincing reason that can be given for just
picking out this one sign of bodily life. If, on the other hand heartbeat
and body heat do not count, why bother so much about spontaneous breathing?
Surely once the 'person' is gone then all these functions are at
the level of autonomic biological reflexes.
The proposed definition is, however, helpful for several reasons.
First it calls attention to the need for a definition of what
constitutes death, which is more basic and more general than the current
agreed criteria for the diagnosis of death.
Secondly it shows up vividly the weakness of the present working definition
of death, more a reflection of actual practice than a rationally based
definition in its own right.
Thirdly it shows how the question of the definition of death, while
it has important medical implications, is not itself a medical question,
and thus the opinions of medical professionals have no more weight than
those of other thinking people.
A widespread consultation and examination of the question of a definition
of death, at the political and legal level, would place this decision where
it belongs, at the level of society and not just with medical practitioners.
The combination of reasons behind the current practice has led to a consensus
that is intrinsically unstable and a pattern of practice that is more questionable
than it at first appears. The suggestion of this writer is that death should
be defined as:
The irreversible cessation of all integrated
functioning of the human organism as a whole, mental or physical.
Medical practitioners could argue in practice to what extent and how
brain death or brainstem death fulfilled this definition, but death itself
should not be defined in 'personal' or neuro - physiological terms. Developments
in intensive care and transplant medicine have raised questions that are
not only of a practical but also of a conceptual kind. Before discussion
of particular medical criteria can start there must be a clear idea
of what constitutes human death.
Bibliography
Beecher, H.K., "A definition of irreversible
coma. Report of the ad hoc committee of the Harvard Medical School to examine
the definition of brain death" Journal of the American Medical Association
1968, 205, 337-340.
Braine, D., The Human Person: Animal and Spirit (1992) University
of Notre Dame Press, Indiana.
Byrne, Paul A., Nilges, Richard G., "The Brain Stem in Brain Death:
A Critical review" Issues in Law and Medicine 1993, 9(1), 3-21.
Conference of the Medical Royal Colleges (1976) "Diagnosis of brain
death" British Medical Journal ii 1187-1188; also Lancet
ii 1069-1070.
Conference of the Medical Royal Colleges (1979) "Diagnosis of death"
British Medical Journal i 332; also Lancet i 261-262.
Evans, D. W., Hill, D.J., "The brain stems of organ donors are not
dead" Catholic Medical Quarterly 1989, 40(3), 113-120.
Gillet, G.R., "Consciousness, the brain and what matters" Bioethics
1990, 4(3), 181-198.
Gillon, Ranaan (Editorial, "Death") Journal of Medical Ethics
1990, 16, 3-4.
John Paul II, Pope, Evangelium Vitae (1995) Catholic Truth Society,
London.
Jonas, H., "Against the stream" in Jonas, H., Philosophical
Essays: From Ancient Creed to Technological Man (1974) Englewood Cliffs,
NJ, pp. 132-140.
Jones, D. A., "Nagging doubts about brain death" Catholic
Medical Quarterly 1995, 47(3), 263-273.
Kaukinen, S., Makela, K., Hakkinen, V.K., Martikainen, K., "Significance
of electrical activity in brain- stem death" Intensive Care Medicine
1995, 21, 76-78.
Kerr, F., Theology after Wittgenstein (2nd edition) (1997) SPCK,
London.
Lamb, D., Death, Brain Death and Ethics (1985) State University
of New York Press, Albany, NY (reprinted 1996 Avebury, Brookfield).
Lizza, John P., "Persons and Death: What's metaphysically wrong
with our current statutory definition of death?" Journal of Medicine
& Philosophy 1993, 18, 351-374.
President's Commission for the Study of Ethical Problems in Medicine
and Biomedical and Behavioural Research, Defining Death: Medical, Legal
and Ethical Issues in the Determination of Death (1981) US Government
Printing Office, Washington.
Seifert, J., "Is 'Brain Death' actual death?" The Monist
(1993), 76 (2), 173-202.
Shewmon, A. D., "Recovery from 'brain death': A neurologist's Apologia"
Linacre Quarterly 1997, 64, 30-96.
Singer, P., Rethinking Life and Death (1995) Oxford University
Press, Oxford.
Working Group of Royal College of Physicians (1995) "Criteria for
the diagnosis of brain stem death" Journal of the Royal College
of Physicians of London 29, 381-382.
Younger, S.J., Landefeld, C.S., et al., "'Brain Death' and organ
retrieval: a cross-sectional survey of knowledge and concepts among health
professionals" Journal of the American Medical Association 1989,
261(15), 2205-2210.
Younger, S.J., "Defining death: A superficial and fragile consensus"
Archives of Neurology 1992, 49, 570-572.
