Organ donation – an outline for general practitioners
Introduction
It is becoming increasingly important for general
practitioners to have basic knowledge about the process of organ
donation. This paper is written with that in mind, but is not
intended to cover the subject in great depth. Suggestions for
further reading are listed at the end of the document.
Many organs are now being considered as potentially suitable
for transplantation, both human to human and animal to human. The
discussion points in this paper refer solely to solid organs – such
as kidney, liver, pancreas, heart and lung. The donation of tissue
cells and fluid, such as bone marrow, blood and gametes, is not
covered, and may require exploration in a further document.
Background
The first
successful solid organ transplant was carried out on 23 December
1954. Dr Joseph Murray transplanted the kidney from one identical
twin to the other in Boston, USA. The first heart transplant was
performed by Dr Christian Barnard in 1967 in South
Africa.
Transplant technology and survival rates have
advanced to such an extent that demand for organs vastly exceeds
supply in most countries with transplant programmes. The shortage
of organs is compounded now that the criteria for eligibility for
transplant have been broadened to be more inclusive and equitable
by including, for example, the elderly. If we accept that organ
transplantation is a medically desirable and ethically acceptable
procedure, then we need to explore energetically ways of overcoming
the problem.
- At the end of December 2001, 6,842 people were on the active
and temporarily suspended transplant waiting list in the UK. The
waiting list continues to grow each year.
- Despite a small rise in the number of cadaveric organ donors
during 2000, the total number of organ transplants fell by 1%.
- Of patients registered during 2000, 11% on the cardiothoracic
list and 7% on the liver list had died by the end of the year
without receiving a transplant. Others will have died without even
reaching the waiting list.
- Studies show that around 70% of the population would be willing
to donate organs after their death, yet only 15% of the population
are registered on the NHS Organ Donor Register.1
It is important to recognise that there are doctors and
members of the public who do not agree with this point of view, for
a variety of reasons. Their views ought to be respected. We must
also understand the logic behind the argument that we need to do
more to prevent conditions predisposing to organ failure. Early
identification of hypertension and its aggressive treatment could
have some effect in reducing kidney failure for example, but it
would not make dialysis programmes entirely redundant.
Why is it important for GPs to be well informed about organ
donation?
This paper makes the assumption that most of those who read it
agree that organ transplantation is beneficial to patients who
would otherwise die, or have severely restricted lives.
If we agree this premise, then we will agree that increasing
the number of available organ donors is a beneficial exercise. It
would be easier for us as GPs to influence the exercise if we all
knew more about organ donation, both conceptually and practically.
In particular, we need to be aware of some of the concerns that may
affect public thinking and the decisions made by our patients. It
is important that we put ourselves in the position of being able to
discuss these issues in the consulting room as and when they
arise.
Carrying a donor card
Many people know, or think they know, about ‘donor cards’. Few
have one in their possession, fewer have completed the form which
places them on the donor register, and even fewer carry one on
their person when they go out. In any case, these cards are quite
difficult to get hold of, unless the individual is
determined.
There is an opportunity for new patients filling in a
registration form for the practice to complete the ‘donor boxes’ on
the back of the form, and some GP practices have donor cards
displayed in their waiting rooms. There are differing opinions
about whether reception staff ought to point this out to patients:
some are very positive about it, and others prefer to leave it to
patients to discover the option. GPs themselves are divided in
their opinions as well, and many would hesitate to include any
input on organ donation in their first interview with a new
patient.
It is
disappointing to know that few register their wishes or carry
cards. It is more surprising to be told that those hospital doctors
working in ITUs only rarely access the official donor register. It
may not be surprising that family members can – and sometimes do –
override the wishes of the possible donor by refusing permission
for removal of organs. Overall, an aggressive ‘carry a card’
publicity programme may improve public awareness, but may not
provide much benefit for the money spent. We could be more positive
in our GP practices in encouraging people to think seriously about
organ donation. This would help family members faced with difficult
decisions to be better prepared. It may also help young people to
discuss their own wishes with their families, and to be quite clear
about what these are.
It is possible that many people are reticent about ‘signing
up’ as an organ donor because they have very real fears about the
process of obtaining their organs. These fears are also present in
relatives of potential donors. ‘Will I (they) be really dead?’ and
‘will I (they) feel pain and be powerless to protest?’ If we are
better prepared to discuss these fears with our patients and to
provide them with clear information, then they will be more likely
to view the donor state positively.
Opting in/ opting out/ presumed
consent
"Societies across the world…eschew…the ‘taking’ of organs from
cadavers, so-called routine procurement, without at least some form
of … ‘consent’ to the removal"2. Price goes on to say that we do
not see any objection to an individual giving permission in advance
for the use of his or her organs after death, but asks where does
the right of a relative to consent or to refuse such use come
from?
At present in the UK, we have the system of ‘contracting, or
opting in’. This relies on individuals making a conscious decision
to donate organs after death, a decision that may be difficult to
contemplate for the young person in particular. Some countries in
Europe, most notably Belgium and Austria, have introduced the
system of ‘opting out’, where consent is presumed unless there is
evidence to the contrary. Price comments that we could ask, with
some justification, whether this is any more than the routine
taking of organs, implying public ownership of the cadaver. Yet
there is no evidence to show that relatives’ wishes would be
countermanded in the interests of the transplant programme of the
countries with this system. In both Belgium and Spain, where there
is legislation for presumed consent, relatives are asked for their
views and their wishes are respected.3,4 and refusal rates are
similar to those in the ‘opting in’ system.
Whichever system is in operation, we need to question the
rights and wrongs of countermanding the dead person’s expressed
wishes. Not only are those wishes being overruled by the relative,
but also the refusal denies another person the possibility of
receiving an organ. Thus we are placing the rights of the relative
far above the integrity of the dead person and the need of the
possible recipient. According to the Human Tissue Act 1961, the
hospital administrative officer is in lawful possession of the
body, and in theory ought to follow the wishes of the deceased. In
practice, this has the potential of adding to the suffering of the
relatives, and it could be seen as cruel to pursue retrieval in
these circumstances, however beneficial it might be to another
patient5.
"While this
may be very good and sympathetic medicine, it is, paradoxically,
doubtful medical ethics - effectively, the last autonomous wish of
the individual is being thwarted simply because he or she is in no
position to object."6 Fortunately, in practice it is rare for a
conflict to occur between the wishes of the dead person to donate
and those of the relative, who does not
agree.7
Cadaveric donation and death confirmed by brain stem tests
(or ‘brain stem death’)
The majority
of organs for donation come from cadavers - people who are dead.
However, death is a process not an event, if considered in
biological terms, yet it needs to be defined as an isolated moment,
for legal reasons. The person’s legal status changes radically
after death. On the one hand, the diagnosis of death, not merely
the process of dying, but actual death, is important. On the other
hand, time is crucial in the harvesting of organs, especially
hearts, livers and lungs: the fresher the organ, the better the
outcome. These organs will deteriorate rapidly as soon as
perfusion, natural or artificial, ceases, and will cease to be
suitable for transplantation.
It is for
this reason that many successfully transplanted organs are donated
by patients who have been artificially ventilated in ITUs and have
been medically certified by the use of specific tests as ‘brain
stem dead’8. "The concept and diagnosis of brain stem death9 is
central to cadaveric donation, and to intensive care in general;
but it is one which is often difficult for the general public to
understand, although it is no longer controversial for most of the
medical profession"10.
There is a
clear link between reluctance to donate organs by family members
and lack of knowledge about brain stem death. "Lack of
comprehension or support fosters anxiety as to the possibility of
being declared dead8 prematurely and reflects itself in the
reluctance of some to assent to the removal of
organs."11
Most GPs have no difficulty in pronouncing a
patient dead when the death occurs outside hospital, and the time
of death is clear. However, in ITU the moment of death may not be
so clear cut. In the UK, a diagnosis of ‘brain stem death’ may have
been made and confirmed, yet the patient’s breathing may still be
artificially maintained - and his heart may continue to beat. Is he
dead, and if so, at what moment did death occur?
To the lay
observer or non-medical relative, it may be difficult to look on
someone who is warm, pink and perfused as dead. Without the
opportunity to understand the concept of brain stem death, how
could that relative possibly agree to the harvesting of organs from
such an individual? In Denmark, the Council of Ethics did indeed
recognise the difficulty, and rejected the principle of brain stem
death in 1989.12 Their argument relied on the community's view of
death as occurring when cardiac function ceased. Under this
argument, there can be no ‘heart beating donor’, and cardiac
transplantation is ethically precluded.
In the UK however, it is both medically
accepted and legally endorsed that persons whose brain stems are
dead are certifiably dead. It remains to improve public
understanding of what this really means, and how the diagnosis of
brain stem death is made; better understanding may reduce any
public misgiving. We need to reconcile the repugnance felt by many
with regard to removing organs from a warm pink heart beating
donor, whatever the state of his or her brain.13 It may be that
those thinking about becoming donors are inhibited by this strong
feeling. ‘Will they take my organs before I’m really dead?’ We
might question whether the benefit to another which ensues from
receiving a fresh organ outweighs any possible harm from the
treatment of the donor.14
There are
three phases in the diagnosis of brain stem
death15
- Exclusion of reversible causes of coma and
diagnosis of cause of irreversible brain damage
- Testing for destruction of brain stem
components
- Confirmation of inability to breath
spontaneously
Once the
diagnosis has been made, the cadaver can become an organ
donor,16providing
that
- There is no reason to suppose that in life the
individual had expressed any objection, and
- There is no objection from the nearest available
relative(s)
(In general,
family refusal amounts to 26% in Europe, and has been reported as
30% in the UK17)
In any discussion on this topic with patients,
the GP needs to be clear in his or her own mind on the issue of
brain stem death. The medical and legal position in the UK is
clearly stated. It is the moral argument for and against that must
be resolved, possibly on an individual basis.
We need to be aware of two other controversial
aspects of cadaveric donation
- The use of anaesthetic agents during organ
retrieval
Those
members of the public who read media reports on medical matters
will remember some controversy reported on this activity. It is
more or less standard practice for anaesthetic agents to be used
during organ retrieval.
The logic behind this will escape those who
say ‘if the donor is dead, why is an anaesthetic needed – and if
he’s not dead, you should not be doing this.’ The difficult truth,
as stated by the anaesthetists and surgeons, is that the cadaver
may retain some reflex movement that hinders the smooth retrieval
of organs and makes the transplant surgeon’s work difficult. The
use of muscle relaxants, for example, helps the process. The
reasons have been well argued by the College of Anaesthetists, and,
for the time being, have been generally accepted by the
profession.
Elective ventilation (EV)
This is a
uniquely British phenomenon. It began in Exeter as a means of
increasing the availability of donor organs by the identification
of potential future donors amongst patients admitted to the medical
wards.18 Patients who suffer a devastating stroke and are deeply
comatose over a period of time are known to have an extremely small
chance of survival, and eventually succumb to brain stem death.
According to the Exeter protocol, patients in this category would
be transferred to ITU and maintained on ventilation until brain
stem death occurred. ITU support was needed during this period of
time of between 3 and 41 hours. This use of a scarce resource, such
as ITU care, raises an important question on its ethical
acceptability in utilitarian terms.
At the time,
elective ventilation resulted in 100% rise in donor rate over the
UK. It shifted the emphasis away from the prolongation of life for
these afflicted patients towards the maintenance of the vitality of
their organs. Ethically and legally, it is important to be clear
whether this change of tack occurred during the ‘dying process’ or
when the patient was already dead. It would be morally unacceptable
and against the best interests of the dying patient to prolong any
discomfort associated with dying in the best interests of another
individual. In particular, there was no way that the dying person
could have given a valid consent to such a procedure. It was
decided eventually that this was the case, and that it was both
ethically and legally unacceptable. It was declared to be unlawful
(battery) in 1994.
Even so, if someone makes an advance statement
to the effect that they wish for EV if appropriate, this may
influence a court, particularly if that individual had been aware
of the very real risk of inducing a persistent vegetative state if
ventilated close to death, and that ventilation would not be
continued for longer than 48 hours19. Not many members of the
public are aware of this, and it may be that they should be
informed of the possibility of making that choice at the time of
making an advance directive.20
The
living donor
Is there any good reason why organ removal cannot be
justified, providing it is intended for a therapeutic purpose, such
as transplantation, and valid consent has been given?
Again, "if
the body is merely instrumental to our ends…then continuing
functioning of the body is morally insignificant, so that death may
properly be declared despite the continued working of lower
brain…functions. Moreover, there is no reason why one should not be
able to sell body parts, as with most anything else which belongs
to us".21
Not everyone would agree with this view. Moreover, there is a
fundamental ethical problem to be resolved when considering solid
organ donation from the living donor. "The principle of
non-maleficence, or primum non nocere, may favour cadaveric organ
donation; it would not endorse donation by a living donor, however
competent and consenting, who, of necessity, has no pre-existing
ailment that it is the intention to cure."22
Can the surgeon operating to remove a kidney from a healthy
individual, not a patient, be behaving towards that person with
non-maleficence? As Price says, he could be said to be behaving
with maleficence by mutilating the body of the donor, leaving him
less well, and damaged. It is clearly a non-therapeutic procedure,
not an operation done with the donor’s best interests in mind. Even
if the donor insisted that he gave his full and informed consent,
in law no one may consent to being seriously injured.
In spite of
this, the use of living donors has been dealt with in law by the
acceptance that consent to such a non-therapeutic procedure is
valid as long as it is in ‘the public interest’. A life-saving
procedure for the recipient is thereby interpreted as being in the
public interest.
Consent of
the live donor has always been recognised as a difficult issue,
mainly because of the importance of excluding any element of
coercion. Payment for organs is forbidden in many countries as well
as the UK. The offer from the donor has to be non-directed and
therefore, based on altruism. The Human Organ Transplants Act 1989
was designed to foster unrewarded altruism and self-sacrifice by
limiting donations to strangers whilst allowing donations to
genetically linked persons. A provision for other donors exists
under the Unrelated Live Transplant Regulatory Authority (ULTRA)
which considers requests by unrelated donors, such as spouses and
living partners.
The number of organ donations is increased by
the inclusion of live donors, in particular, kidney donors. These
numbers could be increased in some ingenious ways. For example,
there may be a situation where there is tissue incompatibility
between two pairs of related donor/recipients yet cross
compatibility exists between a member of one pair and a member of
the other pair, and vice versa. In another case, with a willing yet
incompatible donor, the donor’s kidney may be retrieved for the
kidney ‘pool’ whilst his incompatible relative moves up a place on
the waiting list. It is unclear at the moment whether these
transplants would be sanctioned by ULTRA, but there does not seem
to be any obvious reason why they should not go ahead.
The recipient and the disease-free
transplant
In the
unlikely event that a patient asks about transmission of disease,
for example HIV infection or even cancer, from a donor organ, a GP
cannot give full, reassurance. There is always going to be a risk;
as time is of the essence in the retrieval of viable organs, it
would be unrealistic to carry out exhaustive testing before
transplantation. We ought to feel confident that potential
recipients are fully informed on this point during discussions with
their consultants. The question is more likely to come from someone
not immediately involved, particularly if they have picked up
something reported in the media. Nevertheless, the GP has a
responsibility to ensure that patients have access to the latest
information on this point.
More
information – more donors?
- Potential donors and relatives of potential
donors need a full and clear understanding of ‘brain stem death’,
in particular, that the heart can continue to beat spontaneously in
a ‘brain stem dead’ person. Written information on these points
could be provided as a reminder.
- They need to know how such persons are
maintained clinically once they have been medically certified as
brain stem dead, prior to donation.
- They need to be aware of the use of anaesthetic
agents during organ retrieval, to the extent of full
anaesthesia.
If, in the
light of solid information about the clinical circumstances of
death confirmed by brain stem tests and with due assurances about
the possibility of providing full-spectrum anaesthesia where
requested, people are then happy to offer themselves as donors,
then the ethical requirements for valid consent to be a donor are
fulfilled. When someone is irretrievably dying, presumed to be
irreversibly unconscious, and guaranteed to be insensate by
anaesthesia, then that individual might view his or her organs as
of no further use to them. Given such a guarantee, many would
consent to the donation of their organs, or those of their dying
relative, for the undisputed benefit to others.
The GP is in a good position to provide this
information, and allay the fears that trouble many people. They
would then be prepared to accept the possibility of helping someone
else to live after their own life, or the life of their relative,
had come to an end.
- Extract from
the Draft Parliamentary Brief The BMA’s position on a "soft" system
of presumed consent for organ donation for transplantation purposes
12/02/02
- D. Price (2000) Legal and Ethical Aspects of
Organ Transplantation Cambridge University Press. Cambridge
- R. Matesanz (1998) Cadaveric organ donation:
comparison of legislation in various countries of Europe.
Transplantation 1998. Nephrol Dial transplant; 13: 1632-1635
- P Michielson (1996) Presumed consent to organ
donation: ten years experience in Belgium. Journal of the Royal
Society of Medicine 89: 663 - 666
- It is interesting to note that relatives often
change their minds in the days immediately following the death, and
agree to donation. Highly skilled local transplant coordinators,
such as exist in Spain, together with the availability of ITU beds,
contribute to this to a large degree. For further information on
the Spanish system, see Organ donation: the way forward (2001) The
National Kidney Research Fund
- J K Mason and R A McCall Smith (1994) Law and
Medical Ethics p304 Butterworths. London
- Whilst acknowledging the difficulties
experienced by family members which might lead them to over-ride
the wishes of a possible donor, the RCGP Patient Liaison Group
members were not sympathetic towards a state of affairs in which an
individual’s decision, taken deliberately, to donate organs could
be over-ridden by relatives. The Group agreed that family members
should not be asked for permission. Consideration should be given
to the communication skills of those given the job of letting
family know of the wishes of the patient sensitively and, if
possible, allowing them some time to come to terms with the
information – without seeking their permission.
- The term ‘death confirmed by brain stem tests’
is now preferable. The older phrase ‘brain stem death’ may be less
accurate, but is used in this paper for brevity
- Many jurisdictions now incorporate brain death
as a legal entity.
- King’s Fund Institute A question of give and
take Research report 18 (1994) King’s Fund Institute London
- Ibid
- M. Evans (1990) Death in Denmark Journal of
Medical Ethics 16:191-194
- M.Evans (1994) Against Brainstem Death. In:
R.Gillon (ed) Principles of Health Care Ethics John Wiley and Sons
Ltd
- M.Evans (1990) A plea for the heart Bioethics
Volume 4 Number 3:227-231
- It has been suggested that written information
on the brain stem and its function could be provided for patients.
This would facilitate better understanding (RCGP Patient Liaison
Group)
- Clearly, it is unlawful to kill a patient either
for or by organ retrieval (the ‘dead donor’ rule).
- S.M.Gore, C.J.Hinds and A.J.Rutherford (1989)
Organ Donation from Intensive care Units in England British Medical
Journal 1193
- T.G.Feest, H.N.Riad, C.H.Collins et al (1990)
Protocol for Increasing Organ Donation after Cerebrovascular Deaths
in a District General Hospital Lancet 335: 1133
- It is clear that any patient who considers
making am advance directive that includes the choice for EV must be
fully informed of the implication of survival in a persistent, or
prolonged, vegetative state.
- As with any adult in the UK excluding Scotland,
a relative may not consent to EV by proxy.
- D.Price (2000) Legal and Ethical Aspects of
Organ Transplantation Cambridge University Press. Cambridge
Further reading
- D.G. Jones (2000) Speaking for the Dead:
Cadavers in Biology and Medicine Ashford (reviewed in Journal of
Medical Ethics Feb 2002 Vol 28 no 1 pp57-58
- Ian Kennedy and Andrew Grubb (1994) Medical Law:
Text with Materials Butterworths. London
- Ian Kennedy and Andrew Grubb (eds) (1998)
Principles of Medical Law Oxford University Press. Oxford
- Mason and McCall Smith (1994) Law and Medical
Ethics Butterworths. London
- David Price (2000) Legal and Ethical Aspects of
Organ Transplantation Cambridge University Press. Cambridge
- Peter Singer (1994) rethinking Life and Death
Oxford University Press. Oxford
Useful websites
Acknowledgements
Members of the RCGP Ethics Committee, in particular, Dr Martyn
Evans.
Members of the RCGP Patients'Liaison Group
Dr Ann Orme-Smith MA FRCGP (On behalf of the Committee on
Medical Ethics)
March 2002