CHAPTER 11: CONCLUSIONS AND RECOMMENDATIONS
Chapter 1: Setting the Scene
399. We make this Report to the House for debate.
Chapter 3: Shortage of donor organs across the
EU
ORGAN DONATION RATES
400. The shortage of organs available for transplant both
in the UK and across the EU is a serious public health problem
which has significant human and economic costs.
401. In the UK, the organ donation rate lags
substantially behind not only the best achieved in the EU, but
also the overall EU average rate.
402. We recommend that the Government should
support the work of the European Commission in seeking to raise
the profile of organ donation issues across the EU and in seeking
ways to reduce the shortage of organs for transplantation.
403. We recommend also that the Government should
act urgently to address the shortage of organs for transplantation
in the UK by taking measures which will significantly increase
organ donation rates over the next five years.
ACQUIRING ORGANS FOR TRANSPLANT
404. All forms of donation—living donation,
donation after brain-stem death and donation after cardiac death—have
the potential for increases in volume, although brain-stem death
donation is the principal source. There are ethical and legal
uncertainties relating to donation after cardiac death which limit
its acceptability among medical practitioners.
DONATION AFTER BRAIN STEM DEATH
405. While the criteria for the definition of
brain stem death are widely accepted across the medical profession,
there are some aspects on which clarification would be valuable.
The work of the Academy of Medical Royal Colleges (AMRC) to develop
an up-dated Code of Practice for the diagnosis of death is therefore
most timely, although its publication appears to be awaiting endorsement
from the Department of Health.
406. We welcome the completion of the work by
the Academy of Medical Royal Colleges (AMRC) to produce an up-dated
Code of Practice for the diagnosis of death. We urge the Government
to expedite the publication of this badly needed new guidance
and to draw it to the attention of the European Commission.
DONATION AFTER CARDIAC DEATH
407. We recommend that the Government should
address the ethical and legal issues which currently limit the
extent to which donation after cardiac death is accepted across
the medical profession.
CROSS BORDER DONATION
408. There are practical limitations, largely
arising from the deterioration in the quality of a donated organ
during its travel from donor to recipient, to the practical extent
of cross-border donation within the EU. Nevertheless, there is
a potential for expanding the numbers of such donations between
neighbouring Member States.
409. We recommend that the Commission should
pursue their ideas for increasing the supply of suitable organs
for transplantation by encouraging Member States to improve the
arrangements for donation across internal EU borders. These arrangements
should take account of the impracticality of successful donation
in cases for which the time to transport the organ between donor
and recipient would be too long.
Chapter 4: Proposed EU Directive relating to organ
quality and safety
QUALITY AND SAFETY
410. We are persuaded that the introduction of
a European directive, on the quality and safety of organ donation
and transplantation, would be a valuable measure for helping potential
organ recipients to feel confident in the basic quality of an
organ and the safety of procedures wherever in the EU an organ
had been donated and wherever transplantation was to take place.
Given the relatively low levels of cross border donation, for
most recipients this would translate into confidence in their
national systems, but for hard to match recipients or patients
living in countries other than their own, it would mean that they
should feel confident to accept any organ offered by an EU Member
State.
411. We recommend that the Government should
support the introduction of an EU directive on the quality and
safety of organ donation and transplantation in a form which provides
minimum standards across the EU, but is not overly bureaucratic
and which does not impose requirements beyond those which are
clinically justified.
BALANCING SAFETY AND QUALITY STANDARDS WITH INCREASING
ORGAN DONATION
412. We share and underline the concerns of several
of our witnesses, however, that a directive should not introduce
stringent or overly-bureaucratic requirements beyond those which
are clinically justified. There needs to be sufficient flexibility
in a directive to allow scope for clinical judgment and informed
patient choice to be applied, particularly where existing systems
are working well.
CLINICAL JUDGEMENT
413. In particular, we were convinced by the
case made to us that clinicians and patients together must have
the freedom to make informed decisions about the balance between
the acceptable quality of organs to be transplanted and the medical
needs of the patient. An organ deemed of insufficient quality
for a patient who can afford to wait longer for a transplant may
be judged suitable for transplant to a patient who, without it,
would have a high risk of imminent death.
414. We recommend that the Government should
seek to ensure that the directive allows sufficient flexibility
for decisions, about the quality of organs to be used for transplantation,
to be informed by soundly based clinical judgement of the medical
urgency of need of the patient and informed patient choice.
Chapter 5: Proposed EU action plan for cooperation
on organ donation
GREATER COOPERATION BETWEEN EU MEMBER STATES
415. We support the proposal for an EU action
plan to promote cooperation between Member States on organ donation
in the interests of increasing the supply of organs. Our view
is that the exchange of information via this means would be valuable
over a number of areas including: best practice; the identification
of potential donors; the diagnosis of death; information about
transplant outcomes; and management information.
416. We recommend that the Government should
support the Commission in its development of an Action Plan relating
to organ donation and transplantation. The action plan should
provide financial and infrastructure support for information exchange
and research collaboration between Member States, both reinforcing
and expanding existing successful collaborations, and enabling
the development of new initiatives which will address the shortage
of organs for donation across the EU.
PUBLIC AWARENESS
417. We recognise the need for public awareness
and understanding of organ donation and transplantation issues
to be increased, and we welcome the Government's commitment to
fund this in the UK over the next two years. Given the scepticism
expressed by some key witnesses, we would, however, like to see
work done to establish a basis for assessing the effectiveness
of such awareness raising in increasing donation rates.
418. We recommend that the Commission should
support Member States in developing and auditing public awareness
campaigns suited to their own socio-economic and cultural contexts.
We would particularly encourage the development of campaigns designed
to engage hard-to- reach groups. Such work should be accompanied
by provision, where possible, to assess the effectiveness of such
campaigns in increasing donation rates.
ORGAN TRAFFICKING
419. While we understand that organ trafficking
and organ tourism are not currently major problems in the EU,
we agree that there is a need for the Commission and Member States
to be vigilant in monitoring and tackling any cases which may
occur. While we note the view that it would be desirable to have
in place a mechanism for tracing trafficked organs, we are not
clear how such a mechanism could operate in practice.
EUROPEAN DONOR CARD
420. The balance of views we have heard is that
a European Organ Donor Card would not command public support and
would not add value to national donor card systems already in
place. We were concerned that it would be difficult for carriers
of a standardised European Organ Donor Card to understand that
their wishes regarding donation would be interpreted differently
in Members States according to the arrangements for consent in
place in each country. Nevertheless, we do see some merit in the
idea of introducing a common format for the donation cards used
by each Member State, providing that these are designed to be
consistent with the donation consent process which is in force
in the Member State of the holder's origin.
421. We recommend that the Commission should
explore the options for the introduction of a common format for
the donation cards used by each Member State which are designed
to be consistent with the donation consent process which is in
force in the Member State of the holder's origin. We recommend
also that the Commission should encourage Member States to develop
effective processes for donors to express their wishes in the
context of their own consent systems.
422. We heard of, and were interested in, suggestions
for community-related donation card schemes.
423. We recommend that the Government should
give active consideration to investigating the merits of cooperation
with local organisations, businesses and others to establish the
scope for the introduction of community-based donor card schemes.
INFORMATION AND RESEARCH
424. We were impressed by the evidence we received
of the benefits which may be gained through cross border information
exchange and research in relation to organ donation issues. In
particular, experiences with the success of donation services
in Spain (which we discuss further in chapter 6) have had considerable
influence both in the UK and across the EU as a whole. We recognise
the support for the Commission to help fund cross-EU based research
in relation to the attitudes to organ donation of different population
sub-groups.
Chapter 6: Organisation of organ donation and
transplantation services
THE "SPANISH MODEL" FOR ORGAN DONATION
SERVICES
425. We are convinced, largely from what we heard
of the experience in Spain, that the effective organisation of
organ donation services is key to success when addressing issues
of the scarcity and the quality and safety of human organs for
transplant.
426. We recognise that a key factor leading to
the success of the Spanish system has been the strong emphasis
given to the selection and training of the staff involved in organ
donation services.
427. We commend the success of the system, introduced
by Dr Rafael Matesanz and his colleagues, for the organisation
of organ donation and transplantation services in Spain. We welcome
the fact that, in the UK, the Organ Donation Taskforce drew considerably
on the Spanish experience in formulating their recommendations
for changing the UK system; and we recommend that the European
Commission advises Member States also to draw appropriate lessons
from the Spanish success in introducing changes to the systems
in place in their own countries.
EMPLOYMENT AND TRAINING OF STAFF
428. We recommend, in particular, that the Commission
should draw attention to the key role that has been played in
improving Spanish organ donation rates by the priority given to
the selection and training of the staff involved in organ donation
services.
DONOR IDENTIFICATION AND AUDIT
429. We recognise that potential donors are lost
within the UK system as it is presently organised. In particular,
we note the evidence, based on the Potential Donor Audit carried
out by UK Transplant, that the omission of brain stem death testing
for all potential organ donors leads to a significant loss of
donor organs.
THE ORGAN DONATION TASKFORCE'S PROPOSALS
430. We welcome the Organ Donation Taskforce's
recommendations to address the barriers to organ donation in the
UK through the reorganisation of organ donation services.
431. We consider that the Taskforce's use of
the experience of the Spanish system for organising donation services
is a good example of how cross-EU cooperation can benefit individual
Member States, and we are convinced that there are key components
of an effective organ donation organisation that could be implemented
to good effect in most individual Member States.
432. We acknowledge the merits of the approach
(as adopted by the UK Government) of setting up a Taskforce of
qualified experts to study the issues relating to organ donation
services, learning from experience elsewhere in the EU, in order
to produce proposals suited to a specific country's health care
system and to its social, economic, cultural and ethical environment.
We recommend that the Commission should encourage Member States
where there is a need to improve organ donation rates, as in the
UK, to assess whether this type of approach would be helpful.
433. We recommend that the Government gives a
clear and strong commitment to funding the full implementation
of the recommendations of the Organ Donation Taskforce for the
re-organisation of organ donation and transplantation services
in the UK, both during the crucially important first five years
and beyond.
434. We recommend also that the Government puts
in place mechanisms to monitor the effectiveness of changes being
made as a result of the implementation of the Taskforce proposals.
This would have the aim both of ensuring progress within the UK,
and of facilitating the exchange of relevant information with
other EU Member States which face similar challenges and are considering
or implementing similar responses.
Chapter 7: Patient care issues—organ donors
and organ recipients
LIVING DONATION
435. We understand that the living donation of
an organ, most often of a kidney, is an admirable gift which often
has advantages not only medically for the recipient but also,
in other ways, for the donor, especially when she or he is the
carer of the recipient. While we see it as most important that
such donations should be freely given, with no coercion of the
donor, we do see the case for considering whether some reimbursement
should be provided to living donors of the costs they incur which
are attributable to the transplant donation process.
436. We recommend that the Government should
explore the merit of making provision for the reimbursement to
living donors of the costs they incur which are attributable to
the transplant donation process.
DONATION AFTER BRAIN STEM DEATH
437. We support the view that brain stem testing
should be offered for all patients in whom brain stem death is
suspected, and that this is in their interest irrespective of
their donation wishes.
438. We recommend that the Government should
seek to ensure that brain stem testing becomes standard practice
for all patients in whom brain stem death is suspected
439. We understand the potential for a conflict
of interests to arise for medical staff when caring for people
who are identified as potential organ donors. We are persuaded
that it is essential, for the maintenance of trust in health services,
that all such people should be dealt with as patients in the first
instance. They should be provided with appropriate treatment and
care, in line with their best interests, until the point at which
it is agreed that withdrawal of treatment is medically justified.
440. We recommend that the Government should
take steps to ensure that, for a person who has clearly stated
their desire to donate organs, it is recognised legally that it
is in their best interests to facilitate donation through the
appropriate maintenance of their organs prior to or immediately
after death. When the patient's wishes are unknown, but the family
have agreed to donation, the same approach should be taken.
DONATION AFTER CARDIAC DEATH
441. We acknowledge the difficulties faced by
clinicians who might wish to maintain a patient's stability, in
the interests of maximising the chances of donation, when the
steps which need to be taken to do this are not directly in the
patient's medical best interest. We understand also that the legal
uncertainty surrounding this issue causes problems for clinicians
and results in organs being lost to donation.
THE ROLE AND NEEDS OF FAMILIES
442. We are impressed by the evidence we have
received about how important it is, in attempting to increase
the supply of organs for donation, not to lose sight of the needs
and concerns of patients and families.
443. We recommend that the Government should
ensure that in all cases of organ donation, sufficient staff resources
are made available for caring and informed support to be given
to the relatives of the donor.
Chapter 8: Alternative forms for donor consent
CONSENT TO ORGAN DONATION AND THE EU
444. We welcome the Commission's view that the
process by which consent to donation is managed is a matter to
be determined by individual Member States, but recognise that
cooperation across Member States to share experiences relating
to the operation of different forms of consent will prove valuable
for developing the systems that best suit each individual country.
CONSENT TO ORGAN DONATION IN THE UK
445. We understand that the present UK system
for indicating explicit consent to be an organ donor has some
strong advantages, but we regret that it is so little recognised
and used by the public at large. We are persuaded also that it
would be valuable to explore the feasibility of using innovative
means for expanding the extent of donor registration.
UK DONOR CARDS AND THE ORGAN DONOR REGISTER
446. We recommend that the Government should
enhance the operation of the existing system of donor registration
in the UK (which currently operates through a register and donor
cards) by raising public awareness and understanding of organ
donation issues generally and by targeted campaigns to encourage
donor registration. We recommend also that the Government should
explore the feasibility of using innovative means to expand the
extent of donor registration.
THE ROLE OF THE FAMILY
447. We understand also the guidelines that are
in place in the UK for involving the relatives of a donor, where
there are any, in the decision to donate organs; and we consider
that securing the support of these relatives forms a key part
of the donation process.
PRESUMED CONSENT
448. We recommend that the Government's top priority,
in seeking to raise UK organ donation rates, should be to implement
the re-organisation of organ donation and transplantation services.
449. We welcome the work by the Organ Donation
Taskforce to study the case for introducing presumed consent in
the UK.
450. Pending the outcome of this study, and on
the basis of the evidence we have heard during our inquiry, we
do not believe that a convincing case has yet been made for an
immediate move to a presumed consent system in the UK.
PRESUMED CONSENT AND THE ORGANISATION OF DONATION
SERVICES
451. We are persuaded, however, whether or not
an eventual move is made to a presumed consent system, that it
will be essential first to strengthen the organisation of organ
donation services and to raise the level of public awareness and
understanding of donation issues.
452. We recommend further that, before a decision
is taken about presumed consent, the Government should implement
national and local education programmes to improve public understanding
of the issue. If, at a later stage, a decision is taken to switch
to presumed consent, this should not be implemented until considerable
progress has been made in strengthening organ donation services.
Chapter 9: Ethnic and cultural aspects
THE NEED FOR ORGAN TRANSPLANTS IN ETHNIC MINORITY
COMMUNITIES
453. We recognise that, for members of the UK's
black and ethnic minority communities, particularly people of
South Asian and African Caribbean origin, the relatively high
level of need for transplants, combined with a shortage of donor
organs, poses severe problems.
DISEASE PREVENTION
454. We recommend that the Government should
establish programmes to implement and audit the success of disease
prevention schemes which are suited to the attitudes and beliefs
of the different communities which are particularly affected by
diseases associated with organ failure. The Government should
also investigate the extent to which organ donation decisions
within black and ethnic minority groups are influenced by experiences
of, and attitudes to, the health service system more generally
455. An appropriate response to the problem requires
the issue of disease prevention among these communities to be
addressed as well as the issue of promoting organ donation.
REACHING OUT TO COMMUNITIES
456. It is important to consider whether issues
of alienation and inequality might have an impact on a willingness
to donate among some minority groups. Similarly, when considering
the high levels of family refusal within this group, their broader
experience within the NHS should be taken into account.
457. We recommend that, as a part of a wider
public awareness campaign, the Government should support locally
led programmes which have the aim of encouraging black and ethnic
minority communities to engage actively with the goal of increasing
organ donation within their communities.
DATA NEEDS
458. Insufficient information, both in the UK
and across the EU as a whole, is available about the motivation
of black and ethnic minority groups to donate organs, especially
in relation to the importance of factors such as education level
and social status.
459. We recommend that the European Commission
should encourage Member States to collaborate on the conduct of
research, and on the sharing of results from this with a view
to developing appropriate actions, into the impact of cultural,
educational or socio-economic factors on the identification of
suitable donors, family refusal rates and access to organs among
diverse communities across the EU.
460. We recommend that the Government should
play a full part in sponsoring the conduct of such research in
the UK and in sharing the findings with other Member States.
Chapter 10: The views of faith groups
GENERAL VIEWS
461. We conclude that there is widespread support
for the principle of organ donation from faith groups within the
UK. While specific issues raised concerns for particular groups,
notably concerns about donation after brain stem death, most groups
saw decisions regarding donation as a matter for individual conscience.
462. We recommend that the European Commission
should encourage Member States to collaborate on the conduct of
further research, and on the sharing of results from this with
a view to developing appropriate actions, into the extent to which
views based on affiliation to a faith group may affect the decisions
of potential donors and donor families, and the attitudes and
behaviour of relevant health care staff across the EU.
463. We recommend that the Government should
play a full part in sponsoring the conduct of such research in
the UK and in sharing the results obtained with other Member States.
464. We further recommend that faith groups,
and other ethically concerned groups, should be invited to advise
on the development of national and local policies relating to
organ donation and transplant in order to help ensure that these
are sensitive to the needs and concerns of members of such groups.
VIEWS ABOUT BRAIN STEM DEATH
465. We recognise the reservations that some
members of faith groups (as well as some individuals with no faith
group affiliation) have about the concept of brain stem death,
and their consequent opposition to organ donation from donors
whose death has been defined solely on that basis. However, we
see this as a relatively uncommon view and, from the evidence
set out in chapter 3, we are aware that donation from brain stem
dead donors is of key importance as a source of organs for transplantation.
INDIVIDUAL CONSCIENCE AND RELIGIOUS TEACHING
466. We recognise that there is the potential
for confusion if the understanding of community faith leaders
and individual adherents appears to differ from the stated view
of a faith group. However, we accept that there is the scope for
a variety of individual views to exist within the scope of a single
overall faith.
VIEWS ABOUT PRESUMED CONSENT
467. We conclude that, while several of the faith
groups we heard from would be content with a system of presumed
consent, some groups have significant doubts and concerns about
the concept and others express outright opposition.
THE ROLE OF LOCAL RELIGIOUS LEADERS
468. We conclude that local faith leaders have
an important part to play in the bid to increase public engagement
with organ donation, particularly given the importance of combating
fears associated with death more generally.
469. We recommend that the Government encourage
the development of programmes which work at a local level with
faith and community groups to clarify and communicate issues relating
to organ donation
| 
