Written evidence submitted by David Evans
SUMMARY
- The presumption of consent to anything must be
seen as highly contentious and a matter of the most serious concern
to lawyers.
- Any such presumption of consent to surgical assault
upon a person's body can have no validity if there is reason to
think that the person might have objected to that assault on any
reasonable grounds.
- One good reason for refusal of consent to the
non-therapeutic surgery required for organ donation might be the
likelihood of the potential donor never having given serious consideration
to the matter and therefore never having sought information about
what is involved in the procurement of viable organs from human
bodies.
- Another is the real possibility that such information
as may have been sought and obtained might have been misleading—either
directly or through material omission.
- In that regard the basis upon which a mortally
sick patient is declared "deceased"—for the purpose
of acquiring his or her organs for transplantation without legal
difficulties—is very different from the basis upon which
death is ordinarily diagnosed and certified and that highly relevant
fact is not fully and generally understood.
- Such information about death certification for
transplant purposes as has been distributed by the Department
of Health and its agencies has consistently failed to alert the
enquirer to the fact that this is a topic of worldwide debate
and concern.
- It has also failed to provide full and fair information
about the limitations of the tests used to diagnose death on neurological
grounds while the heartbeat and circulation continue, simply asserting
that negative responses to a few bedside tests of some brain stem
functions suffice for that diagnosis on some idiosyncratic notion
of what human death is.
- There is, and never has been, a sound scientific
basis for equating the syndrome so diagnosed with the death of
the person identified as a potential organ donor.
- Neither is there a sound scientific basis for
the diagnosis of death on the circulatory criteria resorted to
recently.
- Since most people cannot be expected to understand
what organ procurement from their only notionally dead bodies
actually involves, their consent to such procedures cannot be
presumed.
- The same concern applies to the understanding
of those who have put their names on the NHS Organ Donor Register—perhaps
by ticking a box registering assent to the removal of their organs
"after my death".
- If any of them thought, when registering, that
they would be dead in the commonly understood sense before organ
removal—or if they didn't realize that they would have to
be paralysed for the purpose but not given anaesthesia although
possibly still sentient—then they were deceived.
- I have long been deeply concerned about this—as
I see it—probability that registered potential donors do
not fully understand what it is that they have "consented"
to but I have so far been unable to persuade the Secretary of
State for Health to offer full and fair information to those from
whom organs are sought, ie to tell them the truth.
- A move towards "presumed consent" without
first ensuring that everyone it may affect is fully and truthfully
informed about what has to happen if they are used as organ donors
some day—and that they clearly understand—seems to
me an extension of the already prevalent deception of altruistic
but vulnerable people in the increasingly frenetic search for
more organs at whatever cost to professional trust and the old-fashioned
idea of fair dealing.
AMPLIFICATION
1. Use of the term "Deceased adults"
in the context of organ procurement, without qualification
or explanation, is seriously misleading. The body of a deceased
person is commonly envisaged as a cadaver—unreactive, pallid,
cooling and stiffening, and certainly without heartbeat, breathing
or respiration. It is not possible to procure transplantable complex
organs from that dead body. For that reason—to make it possible
to obtain organs which will continue to function in another's
body for many years—it is necessary to certify the death
of the donor long before he or she is really dead in the commonly
understood sense (death certification before non-therapeutic surgical
operation on someone being necessary to avoid a charge of assault
or murder).
2. Many different ways of coping with this problem
have been mooted during the past 40-odd years, mostly based on
the idea that death of the brain can be diagnosed while the blood
circulation continues and the body remains fully functional. Despite
the development of more and more sensitive diagnostic techniques
it is still not possible to say that there is no remaining life
in the brains of those diagnosed "brain dead"—while
the heartbeat and blood circulation continue—on any of the
30 or more schedules in use for that purpose worldwide. And when
persisting life—such as electroencephalographic activity,
endocrine function and blood pressure control—is demonstrated,
it is disregarded as of no significance (although the way our
wonderful brains work is not understood) or "explained away"
on the basis of supposed extraordinary mechanisms (the ordinary
mechanisms not having been shown to be inoperative). In the UK
it is simply not sought.
3. In the UK there is no attempt to test the
bulk of the brain—the cerebral hemispheres and mid-brain—or
the first two cranial nerves. Death is diagnosed for transplant
purposes when, in ventilator-dependent patients, some reflexes
with paths through the brain stem are persistently absent over
an unspecified period of time and there is no observed response
to stimulation of the brain stem respiratory centre by a specified
hypercarbic stimulus (a rise in blood carbon dioxide concentration).
This is the clinical syndrome known as "brain stem death".
Since 1995 there has been no official pretence that this state
is brain death—although it is still, carelessly or manipulatively,
referred to as such by those seeking organs from patients so diagnosed—but
it is claimed that it is a state from which there can be no recovery
of consciousness or spontaneous breathing (an untested claim of
an allegedly infallible prognosis). Without general discussion
or philosophical consensus it has been decreed that that state
is to be regarded as the death of the patient and a legal basis
for its certification prior to organ removal. There are no sound
scientific grounds for that practice. The generation of consciousness,
and the minimum neuroanatomical substrate necessary for it, is
not understood. The respiratory centre in the brain stem may still
respond to anoxic drive (low arterial oxygen tension) although
unresponsive to the specified hypercarbic drive—and often
does when mechanical ventilation is finally discontinued.
4. In recent years there has been a move towards
procuring organs from patients whose hearts have been
allowed to stop for a very short time—typically 2-5
minutes—after disconnection of the mechanical ventilator
upon which he or she was dependent. This is a similarly specious
exercise in the attempt to diagnose death while complex organs
are still viable. The length of time it is necessary to wait—after
what appears to be the final heartbeat—in order to be sure
that there is no possibility of resuscitation or remaining life
in the brain is simply not known. It is an area of great interest
for several reasons and should be the subject of intense ethical
scientific research. From my personal experience of many hundreds
of cases of cardiac arrest I can say, with confidence, that the
minimum time is likely to be dependent upon temperature and pertaining
metabolic factors and to exceed currently accepted periods by
a large margin. I have several times resuscitated patients after
documented cardiac arrest for periods of up to 40 minutes, with
full neurological recovery.
5. "Brain stem death" has
never been accepted as a sufficient basis for the diagnosis
and certification of death for transplant purposes in many
or most parts of the world, particularly in the USA. The US
President's Council on Bioethics distanced itself from this UK
practice in December 2008 (page 66 of its White Paper titled Controversies
in the Determination of Death) but no mention of this has
been made in the Department's literature or the mainstream UK
medical journals.
6. Only a few specially privileged UK doctors
are empowered to diagnose death on "brain stem death"
grounds. Many or most of the doctors in this country do not
understand the complexities of these issues, having no need
to take time-consuming practical interest—apart, one might
think, from their responsibility for advising their patients enquiring
about the wisdom of registering as organ donors. It is not known
how many of them actively support organ transplantation as currently
practised—or would do so if fully and accurately informed
about procurement practice. They have never been asked. For many
years our young doctors have been actively misinformed about "brain
stem death" by the Academy of Medical Royal Colleges' Codes
of Practice and Pallis' ABC of Brain Stem Death, published
by the BMA but there are now welcome signs of their proper suspicion
of those sources.
7. While the medical profession as a whole is
not fully apprised of the relevant facts, it is inconceivable
that the general public has a clear, fully informed, understanding
of the special nature of the "death" after which their
organs will be removed if they join the NHS Organ Donor Register
or, if "presumed consent" is adopted, if they fail to
register objection before they become ventilator-dependent and
unable to do so.
8. It is likely that at least some of those who
have registered as potential donors under the current system thought
when they did so—if they thought about it at all when, perhaps,
acting in response to an emotional appeal in the company of other
generously motivated souls—that they would be dead in the
commonly understood sense of that term before surgery to remove
their organs commenced. That being the case, they had a materially
different understanding of the meaning of the words "after
my death" on the application form from that of those
who might one day take up their offer. That, in itself, surely
renders the offer invalid, the two parties to it being not ad
idem about its terms.
9. While that may be a matter for the lawyers
it is cause for much greater concern to most of us if those people
did not fully understand that, instead of being unresponsive and
certainly unconscious when undergoing organ procurement surgery,
they would be so reactive as to necessitate their being paralysed
with drugs to facilitate that surgery and that they might not
be given anaesthesia to cover any possibility of suffering while
it was going on—although indications of such suffering (rises
in blood pressure and heart rate) are commonplace. That is, to
my mind, an ethical consideration far outweighing the legal
aspects. It is, indeed, beyond my understanding of the proper
doctor-patient relationship that anaesthesia may be withheld in
those circumstances—as I am assured it often is. There should
surely be provision on any form registering consent to being used
as an organ donor for the specification of full general anaesthesia
to cover the evisceration.
10. The possibility of residual sentience
is real although discounted in official propaganda. An anaesthetist
with expertise in this area told an audience of lawyers and doctors
in Cambridge recently that he did not accept "brain stem
death" as death and believed that "something was still
coming through" in patients so diagnosed. That being so,
he would not allow his organs to be taken without full general
anaesthesia.
11. The frequently repeated assertion that 90%
of the UK population is in favour of organ transplantation—the
current system for organ procurement being implied—is another
specious claim. It is used quite improperly as persuasion to offer
one's organs (on the basis of the bogus agreement involving different
interpretations of its crucial wording) if one might be prepared
to accept another's organs one day. The true figure for public
acceptance of transplant procedures—explained in full
and without euphemism or "spin"—would be of great
interest. There are indications that it would prove to be less
than 50%.
12. In the world at large, if not yet in the
UK, there is increasing realization that viable organs for
transplantation cannot be obtained from the truly dead. In
consequence there are proposals for legislation permitting the
removal of organs from fully informed consenting donors towards
the end of their lives under specified conditions, thus obviating
all obfuscation and deception (while admitting that the procurement
procedure is the proximate cause of death). In this climate
of refreshing regard for the truth and fair dealing it seems perverse
to attempt to increase the supply of organs by another less than
completely open strategy depending on ignorance and inertia.
13. Organizations such as the Church of England
which should offer guidance to its members on these life-and-death
issues have persistently failed to grasp the nature of redefinitions
of death for utilitarian purposes. However, the Chief Rabbi
has recently issued a ruling against acceptance of "brain
stem death" as human death, and against the carrying of Donor
Cards. The Roman Catholic church stands back from the controversy
despite its 2005 Pontifical Academy conference which came out
against "brain death" (see Finis Vitae - is brain
death still life? Ed. Roberto de Mattei, published by Rubbettino
for the National research Council of Italy, 2006).
14. I have laboured the matter of the necessarily
premature diagnosis of death for organ procurement purposes
because it is the fundamental problem for those who seek transplantable
organs of the highest quality. It is intrinsic to all systems
for their so-called post-mortem acquisition but it has never been
fairly presented to the public generally or to individuals considering
prospective donation or to relatives of those identified as potential
donors. Any move towards "presumed consent" highlights
that problem and demands that it be addressed squarely.
David W Evans MD, FRCP
Sometime Consultant Cardiologist at Papworth and
Addenbrooke's Hospitals
February 2011
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