Memorandum by Dr Paul Murphy, Consultant
in Neuroanaesthesia and Critical Care, Leeds General Infirmary,
Member of the Department of Health Organ Donation Task Force
1. ORGANISATION
OF ORGAN
DONOR AND
TRANSPLANTATION SYSTEMS
There is wide variation in the organisation
and performance management of organ procurement systems. In comparison
to the highly efficient systems such as those seen in Spain and
Northern Italy, where the systematic identification of potential
deceased organ donors is seen as "core business" to
an institution (even though the absolute number of potential donors
each year might be relatively modest), in other countries (for
instance, the United Kingdom) it appears to a highly inconsistent
affair, with no monitoring or sanction being applied to individuals
or institutions that neglect the donation potential of their dying
patients. Whilst it is the case that experts from Spain are frequently
invited to advise lesser performing countries (both within the
EU and elsewhere), it is similarly the case that no one would
come to the UK to model themselves on us at the moment. A fundamental
problem with current UK practice is the absence of engagement
with senior clinicians and Trust managers to acknowledge and act
upon failures in potential donor identification.
2. RAISING PUBLIC
AWARENESS
Evidence for the sustained effectiveness of
publicity campaigns is not convincing. However, efforts to increase
public understanding of donation and transplantation are to be
encouraged, particularly when incorporated into educational programs
such as the National Curriculum. Engagement with black and minority
ethnic (BME) groups is particularly important; in this respect,
the miserable consent rates for donation seen amongst Black and
Asian groups is simply but one example of how these groups travel
through our healthcare system in a completely different fashion
to majority groups.
3. ORGAN DONOR
CARDS AND
THE UK ORGAN
DONOR REGISTER
3.1 The principle benefit of an organ donor
card is that it is an objective record that at some time in the
past the individual recorded a desire to donate in the event of
their death, and that it is a record that close family members
are likely to be aware of. Whilst I have never gone through a
patient's belongings in search of a donor card, when speaking
to the family of a potential donor I would regularly enquire as
to whether the individual had expressed a desire to donate, whether
they had a card, whether they had signed up to the UK Organ Donor
Register (ODR), made an advanced directive etc. The common theme
of all of these approaches is that they direct the burden of decision
making away from the next of kin and back to the individual, thereby
maintaining the principle of patient autonomy as enshrined in
the Human Tissue Act. In my experience, having a "pro-donation"
conversation with a close family member or friend is a most potent
way of recording ones desire to donate in a way that the next
of kin feel obliged and empowered to honour (even though it may
add to their own burden of grief at the time).
3.2 Although experience with the UK ODR
is more limited, anecdotal evidence suggests that knowledge that
a patient has previously registered a desire to donate after death
helps relatives who would have otherwise said "no" to
donation give their consent. The ODR is different to the donor
card however—whilst a donor card or a stated wish to donate
is a tangible and more or less direct link between loved one and
next of kin, the ODR is something brought up by someone else (doctor,
transplant co-ordinator etc) and accessed by someone else. Some
clinicians feel some uncertainties about when the ODR should be
consulted (eg before death vs after death, without the family
knowing or only with their knowledge and permission).
3.3 Registration with the UK ODR is officially
recognised, according to the Human Tissue Authority, as consent
for organ donation after death. However, the validity or quality
of the consent associated with possession of a donor card or registration
with the ODR has been questioned, because little information is
presented on what it might mean to be brain dead,[1]
or how becoming a donor after cardiac death might necessarily
alter the way in which you die.[2]
4. THE EUROPEAN
DONOR CARD
I sense little enthusiasm for a European donor
card. The usefulness of the donor card in the UK has been described
to above, but as means of registering a wish to donate after death
has been superseded by the ODR, access to which can be made either
on line, by telephone or when completing various governmental
applications. Serious consideration should be given to extending
the electronic opportunities to register, particularly given the
increasing access of the population to on-line services such as
Amazon, e-bay, YouTube etc. However, I very much doubt whether
the concept of European registration would receive much public
approval, either in the UK or elsewhere. For instance, one of
the many reasons for the very high rates of donation in Spain
is the emphasis placed upon local donors for local recipients,
ie a strong regional pride in what is happening in the local environment.
This has some resonance with the strong support for donation (and
recipient)-related issues that appears in the local and regional
media in the UK. If anything, I think that the solutions for the
UK lie in developing local pride (particularly amongst the BME
groups) rather than giving the impression that the benefit from
any particular donation may extend not only beyond the local health
care economy but indeed be diluted across national boundaries.[3]
EU initiatives would be better directed towards understanding
why donation rates vary so widely across the EU, exploring ways
of improving engagement amongst BME groups and defining ways of
effectively disseminating the key aspects of successful programs
across the whole of the community.
5. ETHICAL ISSUES
RELATING TO
ORGAN DONATION
AND TRANSPLANTATION
Real or perceived ethico-legal issues represent
a significant obstacle to increasing the number of deceased organ
donors in the UK. It is not clear to what extent such issues have
been relevant in other member states (and if so, how they were
overcome). Potential issues include problems with donor identification
and attempts by the next of kin to place conditions on the allocation
of organs from a loved one.
5.1 Many doctors are concerned about to
what extent the principle of "best interests" allows
the management of a patient's death to be altered so as to maintain
their potential to donate after death, and how such actions may
place them at personal risk of a charge of conflict of interest.
Specific examples include the following:
5.1.1 consider a patient in an A&E department
who is deeply unconsciousness following a brain haemorrhage from
which there is no prospect of survival. Is it ethical or legal
to take the patient to an intensive care unit in order to perform
brain death tests to thereby preserve the potential for heart
beating organ donation, when otherwise—in the best interests
of the patient—treatment would have been withdrawn in the
A&E department?
5.1.2 consider a patient on an intensive
care unit with a catastrophic head injury. His doctors are intending
to perform brain death tests later in the day. Is it ethically
correct to consider the patient as a potential donor before
death is declared, and as a result contact the donor transplant
co-ordinator and the organ donor register, knowing that if you
leave it until after the tests have been performed the opportunity
to proceed to donation might be lost?
5.1.3 for the reasons explained above, non
heart beating organ donation requires the issue of donation to
be considered before treatment is withdrawn and cardiac death
occurs. Does this generate a conflict of interest for those caring
for the patient in addressing the issue of donation before death?
Is it ethical or legal to delay the actual withdrawal of care
until such time as arrangements for surgical removal of the organs
has been made, particularly since this might delay the admission
of subsequent critically ill patients?
5.1.4 the crucial point in the above seems
to rest with the interpretation of "best interests".
Whilst some legal opinion has indicated that it should rest with
that which is strictly related to the best physical interests
of the patient, others suggest that it extends far beyond this
to embrace the wishes and aspirations of the individual when competent,
including a stated desire to donate after death. The Organ Donation
Task Force has been repeatedly frustrated by the difficulties
in obtaining persuasive and authoritative judgements on such matters.
5.2 Occasionally, potential donor families
seek to place conditions on who should or should not receive the
donated organs of their loved one. Since the principle of unconditionality
is fundamental to the gift of donation after death in the UK,
any proposal to limit, qualify or revoke it seems as if it should
automatically be rejected. However, further reflection leads me
to a rather more troubled position, because not only does our
approach to securing donation after death rely heavily on patient
autonomy and an extension of the concepts of best interests, but
also because in life, directionality is fundamental to live related
donor programs. It would seem then that in life a potential donor
can considerably influence the destination of a donated organ,
but in death have no influence whatsoever. There is, however,
a crucial difference between conditionality and directed donation,
in that the former seeks to deny the gift of donation to specific
groups, usually on the grounds of race, creed, lifestyle etc,
and frequently derives from beliefs that are morally repugnant,
whilst directed donation in life occurs within the context of
a specifically identified recipient whose interests and health
are clearly important to the potential donor to the extent they
are prepared to risk their own health or very existence to improve
it. Such acts have considerable resonance with the general public
who readily rejoice in such selfless acts (and similarly condemn
occasions when individuals fail to make such an offering).
5.2.1 Consider then the case of patient
lying brain dead on an ICU whose daughter lies critically ill
elsewhere with acute liver failure whose only hope is a transplant.
Currently the family do not have the right to direct a father's
liver to treat his dying daughter (despite it being inconceivable
that he would not have wished to do so had he been able to be
asked)? Is this right? Would it have made a difference if he had
been being worked up to be a live related donor for her prior
to his death?
6. FAITH AND
CULTURAL ISSUES
All the major faiths in the UK have endorsed
the concept of organ donation for the purposes of transplantation,
although there is little evidence that this has had any impact
upon the poor consent rates from BME groups. In part this is because
it is a mistake to equate faith with culture—for example,
it would be quite wrong to assume that the solution for African
Muslim groups is the same as that for Asian Muslims just because
their religion is the same. My general observation is that the
rejection of the option of donation is but one example of the
poor engagement and communication between clinical staff and the
families of patients from BME groups throughout their illness—one
of my colleagues interprets this as distrust of "white man's
medicine". Others' interpretations focus on an unwillingness
to give, a lack of charity, amongst BME groups, although this
would be quite wrong—within their communities they can often
be incredibly generous to each other. Depressingly, there is little
evidence, either from the UK or elsewhere, of interventions that
have made a real difference, although learning from any examples
of success within the EU should be considered as a matter of some
urgency.
7. PRESUMED CONSENT
AND THE
ROLE OF
THE FAMILY
IN DECISION
MAKING
Although some high profile groups in the UK,
most notably the British Medical Association, support presumed
consent (ie opt out rather than opt in), the evidence that it
makes a difference per se remains equivocal,[4]
mainly because its introduction is usually part of some broader
initiative. The philosophy of donation after death in the UK is
that of a gift, and the next of kin having the opportunity to
honour that gift—my observation is the latter can often
be a very powerful positive experience for the bereaved family.
Occasionally it seems right to allow a family to overturn an individual's
desire to donate because their grief is too great and will be
added to if their loved one undergoes surgical retrieval—if
we are acting according to best interests we must assume that
an individual would not wish to significantly add to the grief
and hurt that the next of kin would be suffering. Opting out,
in my opinion, devalues the gift and the altruism of the donor.
Rather we should be rejoicing in the donation—the giving—and
finding ways to get more people to translate their support of
donation into registration on the ODR, and most crucially, having
that conversation with their family.
4 October 2007
1 There remain in the United Kingdom a handful of individuals
who deny the concept of brain death, describing organ donation
after brain death as the greatest deception of all and citing
the fact that some anaesthetists may administer anaesthetic drugs
during the organ retrieval process to support their arguments.
Other clinicians express theoretical concerns that the current
clinical tests of brain death cannot interrogate every single
neuronal pathway, and cannot therefore declare that the whole
of the brain is dead (even though there is absolutely no evidence
of residual neurological function). Neither is there any evidence
in the world literature to indicate that any patient has ever
recovered from a diagnosis of brain death made using the UK criteria
providing that the tests have been properly applied and interpreted. Back
2
Donation after cardiac death most commonly occurs after the planned
withdrawal of futile life-sustaining therapies on an intensive
care unit. In order for a donation to occur, a surgical team must
be assembled (usually from another hospital), and only when they
are ready can treatment be withdrawn. This inevitably means that
the withdrawal of futile therapies has to be delayed by a few
hours if a donation is to take place. Back
3
I recognise that this would not in any way be the intention of
a European donor card; it may, nevertheless, send such a message. Back
4
With exception of Austria for instance, where the system of "hard"
opt out denies the next of kin the right to over-rule a failure
to opt out. Back
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