It will take more than an opt-out system to increase organ donation

BMJ 2015;351:h5165 doi: 10.1136/bmj.h5165 (Published 20 October 2015)
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Views & Reviews
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It will take more than an opt-out system to increase
organ donation: prioritise donors to receive organs
Radical innovation, such as prioritising donors to receive organs, is needed to help change attitudes,
argues Adnan Sharif
Adnan Sharif consultant nephrologist, Department of Nephrology and Transplantation, Queen
Elizabeth Hospital Birmingham, Birmingham B15 2WB
On 1 December 2015, Wales will unilaterally become the first
country of the United Kingdom to introduce an opt-out system
for organ donation.1 Political leaders in Scotland and Northern
Ireland are debating similar legislation, and pressure will mount
for England to jump on the opt-out bandwagon. Many supportive
organisations are keen for change, including the BMA, which
has long advocated the merits of changing to an opt-out system.2
If such arrangements procure more organs for transplantation,
many would argue that the moral case for presumed consent is
unquestionable.3
Support for an opt-out system is well intentioned but misguided.
The balance of evidence was against UK implementation in
2006, although the public supported such a change.4 And recent
analyses show that organ procurement is higher in countries
with opt-out systems, albeit with a drop in living donation.5
Simple legislative change, however, may not have the same
effect on donor rates in other countries, as variation is
susceptible to unappreciated confounders.6
Education and training
Any success in Wales will probably owe more to mass publicity
than to legislative change alone. Spain, the leading light for
deceased organ donation, has an opt-out system but no opt-out
register: presumed consent is dormant and non-publicised, and
family wishes are respected. Spain attributes its success to
investment in education, training, and hospital resources to
support robust organ donation infrastructure.7 Spain has
successfully nurtured a national culture of organ donation, which
the United Kingdom lacks.
From a British perspective, opt-out systems may not be a
panacea for several reasons. Firstly, the Organ Donor Register
is a register only of interest: being registered is not a
commitment to donate, and not being registered is not a
commitment not to. In fact, most deceased organ donors in the
UK were never registered, and 59% of the 1320 deceased donors
last year were not originally registered.8 Having more names
on the register with an opt-out system does not automatically
translate into more organ donors.
It is meaningless to change to an opt-out system without a
change in attitude. Overall consent/authorisation rate for organ
donation has dropped to 58% and changing to opt-out won’t
simply change this.8 We still allow families to over-rule the
wishes of their deceased loved ones despite them giving explicit
consent in life; for example, the last year alone saw 119 such
cases.8 Transplant professionals currently maintain a
non-confrontational passivity with over-ruling families, and this
docility has been rightfully criticised from an ethical
perspective.9 Clear demarcation of intent (and tacit authorisation)
exists in an opt-in system but will be a grey area in an opt-out
system. In addition, black, Asian, and other minority ethnic
people are under-represented as organ donors, and changing to
an opt-out system would not automatically encourage them to
donate. Considerable investment of time, energy, and resources
by professional and charitable organisations has targeted these
groups with little tangible benefit, and switching to opt-out will
not tackle this apathy.
Another concern is that countries with opt-out systems have
fewer living kidney donors.5 Less than 1% of deaths in the UK
are in circumstances where donation could occur, and living
donors are an invaluable source of organs—predominantly
kidneys (accounting for 34% of kidney transplants last year and
growing).8 An abundant supply of deceased organ donors could
attenuate the need for living kidney donors, but living donation
is imperative in some circumstances. Recipients of living
kidneys have better long term mortality and kidney allograft
survival,8 and for some patients at high risk it is their only
realistic option to attenuate the risk of death soon after
transplantation. In addition, non-directed altruistic living kidney
donors help immunologically challenged patients with end stage
kidney disease by providing transplants to the neediest patients
or triggering extended transplant chains through incorporation
into the national kidney paired donation scheme.10 A decline in
the current steady state of about 100 non-directed altruistic
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BMJ 2015;351:h5165 doi: 10.1136/bmj.h5165 (Published 20 October 2015)
Page 2 of 2
VIEWS & REVIEWS
living kidney donors a year in the UK would jeopardise the
chance of transplantation for some of the most desperate
patients.
More radical solutions
We should not be restrained to a narrow view of just two
options—opting in or out. Even countries with opt-out systems
have large waiting lists for transplants, so we should consider
more radical solutions. For example, the proposal to introduce
prioritisation for non-emergency organ allocation to reward
registered donors may energise our opt-in system.11 NHS Blood
and Transplant, the special health authority, has not led the
national debate on this issue as it proposed in its recent strategy
document, and this must change.12
We celebrate the generous giving of organs, but we must start
rewarding the actual willingness to give. This would devolve
power and responsibility to individuals, with frank discussions
to be had with everyone from schoolchildren to pensioners as
part of a comprehensive education programme. Apathy stems
from a lack of interest, and we must stop kidding ourselves
about a generalised lack of awareness: the same people who
“lack awareness” of organ donation will certainly be aware that
transplants save lives.
A more radical jolt to the consent process and registration
system, rather than opt-out, is the best solution to achieve
significant culture change. Our message to unwilling donors
must be clear: if you are happy to receive organs you must be
willing to give. There are no legitimate excuses for hypocrisy.
Competing interests: I have read and understood the BMJ policy on
declaration of interests and declare the following interests: I sit on the
steering committee of Give a Kidney, a registered charity that promotes
For personal use only: See rights and reprints http://www.bmj.com/permissions
altruistic and non-directed living kidney donation. I am also secretary
of the international non-governmental organisation Doctors Against
Forced Organ Harvesting. I am a member of the National BAME
Transplant Alliance, which aims to boost black, Asian and minority ethnic
donor rates. None of these organisations has had any input into this
article, and the viewpoint expressed does not reflect the views of these
organisations.
Provenance and peer review: Not commissioned; not externally peer
reviewed.
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Cite this as: BMJ 2015;351:h5165
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