Memorandum by the British Kidney Patient
Association
1. EU-WIDE SHORTAGE
OF ORGANS
AVAILABLE FOR
TRANSPLANTATION
There is no one magic solution to the EU-wide,
or indeed worldwide, shortage of organs available for transplantation.
Some methods in some countries for procuring organs for transplantation
seem to be more successful than others but even in the most successful
countries, still organs for transplantation are in short supply
and patients are dying on waiting lists. A major barrier to organ
transplantation is the relatively high refusal rate amongst deceased
patients' relatives to give permission to organ donation, even
when in many cases it has been shown that it was the wish of the
deceased patient to be an organ donor. Certainly a system of presumed
consent, which operates throughout most of Western Europe, would
be a step in the right direction and would undoubtedly yield many
more organs for transplantation in the UK than under the present
system. However, education and publicity should go hand in hand
with any shift to a system of presumed consent.
2. ORGANISATION
OF ORGAN
DONOR AND
TRANSPLANTATION SYSTEMS
We are fortunate in the UK to have a highly
organised centralised organ donor and transplant system in UK
Transplant. UK Transplant has recently devised a new system for
the allocation of kidneys throughout the country. Having one centralised
system such as this means that no kidney patient is subjected
to a `postcode lottery' whereby they stand a greater chance of
receiving an organ by virtue of living in one county as opposed
to another.
3. RAISING PUBLIC
AWARENESS OF
ORGAN DONATION
It is essential that we raise public awareness
of organ donation. In the absence at the present time of a "presumed
consent" approach for identifying organ donors, all steps
should be taken to educate the general public, so that as many
people as possible register as organ donors under the present
system. Additional government funding for such a campaign should
be made available since a kidney transplant is the most cost effective
form of treatment for a person with end stage renal failure. Such
an advertising campaign should encompass all the media and positive
images showing the result of a successful organ transplant (eg
a patient restored to good health) would also play an important
part.
4. USE OF
ORGAN DONOR
CARDS, INCLUDING
THE IDEA
OF A
EUROPEAN ORGAN
DONOR CARD
The continued use of the organ donor card is
to be encouraged but we are not certain about the benefit of introducing
a European organ donor card. Whilst a small number of inter-country
organ transplants will inevitably continue to take place in unusual
or urgent cases, nevertheless a European organ donor card with
its implied suggestion that one's organs are likely to be used
for transplantation overseas, could have the opposite effect on
organ donation to that desired. The UK press, always keen to pander
to the perceived fears of their readers, would no doubt be more
than happy to print such headlines as "Now they (i.e. Europe)
want our organs too!" which could seriously damage our ultimate
shared goal of persuading as many people as possible to become
organ donors.
5. USE OF
VOLUNTEER LIVING
DONORS
Whilst our organisation is not in favour of
living donors, we appreciate that no change in policy, even to
our preferred option of "presumed consent" will entirely
bridge the gap. We believe that everything possible should be
done to increase the supply of cadaver organs for transplantation.
However, living donation should be considered as the final course
of action when, after a period of time, no cadaver kidney has
become available.
Organ transplants between totally unrelated
people should in our view be actively discouraged, since it would
be difficult to prove that no financial incentive had been sought
or offered.
6. ENSURING THE
QUALITY AND
SAFETY OF
CROSS-BORDER
ORGAN DONATION
WITHIN THE
EU
In the rare but important instances when cross-border
organ donation takes place within the EU, it is incredibly important
that donor and recipient units adhere to the same very stringent
conditions relating to all the safety issues.
7. ETHICAL ISSUES
RELATING TO
ORGAN DONATION
AND TRANSPLANTATION
Clearly it is only ethical to remove the organs
of a deceased patient where consent has been given, either by
the deceased patient or their next-of-kin. In the case of a system
of presumed consent, consent is deemed to have been given by the
fact that they had not "opted out". Therefore the all-important
issue of consent has not been compromised.
8. HEALTH AND
SOCIAL WELFARE
BENEFITS OF
ORGAN TRANSPLANTATION
There are obvious, considerable health benefits
to organ transplantation. The recipient's quality of life is restored.
The benefits to wider society are also considerable. The organ
recipient will be able to fully engage with his or her community
once more and will hopefully be able to take up employment. There
are benefits to their immediate family as well, since the implications
of the condition of renal failure impinge on all family members,
restricting their lifestyle, employment, leisure activities, etc.
Also, it should not be forgotten that a considerable number of
fit and healthy babies have been born to mothers post-transplant;
babies that would not otherwise have been born at all.
9. MEDICAL RISKS
OF ORGAN
TRANSPLANTATION
The medical risks of organ transplantation to
both donor and recipient are low, especially when compared to
the risk to the recipient of remaining on dialysis. Risks to the
donor are also extremely low. It is essential for the reputation
of transplantation that all Member States adopt the same high
standards of good practice. Information relating to outcomes and
methodology should be readily available for sharing with other
Member States.
10. ILLEGAL TRAFFICKING
IN ORGANS
It is imperative that any instances of illegal
trafficking are dealt with very severely and that the penalty
acts as a deterrent to others. Any perceived problem in this respect
will undoubtedly serve to undermine the transplant programme by
causing a loss of confidence amongst the general public. Measures
to improve the organ donor situation will hopefully lessen the
incidence of illegal trafficking. EU wide measures to deal with
this problem should be implemented.
11. QUESTIONS
WHICH MAY
ARISE IN
RELATION TO
ORGAN DONATION
AND TRANSPLANTATION
FROM A
FAITH-BASED
POINT OF
VIEW
We are not aware of any faith-based barriers
to organ donation. There may be misconceptions amongst the public
that certain faiths preclude organ donation and it is very important
that such misconceptions are addressed. Education is the key,
and an EU wide policy for addressing such concerns should be developed.
12. QUESTIONS
WHICH MAY
ARISE IN
RELATION TO
ORGAN DONATION
AND TRANSPLANTATION
FROM THE
POINT OF
VIEW OF
POPULATION SUB-GROUPS
WITHIN THE
UK
It is important that the views of all sub-groups
of the population are sought and that specific concerns are addressed.
13. THE "PRESUMED
CONSENT" APPROACH
FOR IDENTIFYING
ORGAN DONORS
Our organisation firmly believes in this approach
for identifying organ donors and this view now has the backing
of the BMA and the Government's Chief Medical Officer, Sir Liam
Donaldson. There is no doubt whatsoever that such a system would
produce many more cadaveric organs for transplantation. We see
no reason why this system would not work extremely well, providing
an "opting out" register was easily available and readily
accessible. This would also be a step in the direction of harmonising
the UK with most other EU countries, since the majority of other
Member States already operate a system of "presumed consent".
14. THE ARRANGEMENTS
FOR TAKING
INTO ACCOUNT
THE VIEW
OF RELATIVES
ABOUT RECEIVING
ORGANS FOR
TRANSPLANTATION FROM
A DECEASED
DONOR
Under the present system of "opting in",
despite a change in the law so that the wishes of the deceased
are paramount, still some relatives override their deceased relative's
wish to be an organ donor, and in such cases the transplant team,
not wanting to cause further distress at a difficult time, choose
not to exercise their legal right to comply with the wishes of
the deceased patient. This is unlikely to change under the present
system. However, the reluctance on the part of the deceased's
relative could be due, in part, to the fact that they were unaware
of their relative's wish, which is why an advertising campaign,
prompting people to discuss their wishes with other family members
is very important.
In countries across Europe where "opting
out" is the norm, some countries still choose to consult
the deceased patient's relative about the proposed organ donation,
whilst others choose not to consult. The British Kidney Patient
Association is in favour of the latter. This is because to be
asked whether it would be acceptable to remove their deceased
relative's organs causes considerable additional distress to a
family a time of great anguish. Presumed consent, as the name
implies, means just that. An education programme aimed at the
general public would of course be essential so that everyone would
be fully aware of the implication of "presumed consent".
An extensive education/publicity programme should also alert the
general population to the means by which they can "opt out".
15. THE PROMOTION
OF COOPERATION
BETWEEN MEMBER
STATES IN
ORDER TO
SHARE EXPERTISE
AND TO
EXPAND THE
SIZE OF
THE POTENTIAL
DONOR POOL
IN EACH
MEMBER STATE
There is an important role for the EU in sharing
expertise and endeavouring to expand the size of the potential
donor pool in each Member State. The pooling and sharing of information
relating to examples of best practice and good "models"
can only be beneficial, especially in those Member States whose
organ donor programmes are less successful or less well developed.
Information regarding such examples should be disseminated to
all Member States. Minimum standards and benchmarks should be
set, to which all EU countries should aspire. Harmonising rules
would also make it less attractive for patients to travel to other
countries within the EU where the chance of receiving an organ
transplant is greater.
16. THE PROVISION
OF A
CROSS-BORDER
FRAMEWORK FOR
THE ORGANISATION
OF ORGAN
DONATION AND
TRANSPLANTATION...
Again we believe there is an important role
for the EU in harmonising rules for organ donation and transplantation
that would provide EU citizens with higher standards for organ
safety and quality than can be assured by the national legislations
of Member States acting separately. It can only be beneficial
to all to aspire to the highest standards operated throughout
the most successful EU Member States.
17. ENABLING
MORE EFFECTIVE
ACTION ACROSS
THE EU TO
FIGHT ILLEGAL
ORGAN TRAFFICKING
A harmonised approach to illegal organ trafficking
is essential if the organ traffickers aren't to simply target
one country as opposed to another. We suggest that a hard-line
approach, with severe penalties should be replicated across the
Member States in an attempt to thwart the perpetrators.
September 2007
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