Examination of Witnesses (Questions 383
- 399)
THURSDAY 20 MARCH 2008
Dr Vivienne Nathanson and Dr Tony Calland
Q383 Chairman: On behalf of
the Committee, welcome. We are extremely grateful to you for coming
and spending time talking to us about what we think is an extremely
important inquiry. We have had now a lot of evidence and we particularly
need to have yours to give some balance and a framework. Please
could you state your name and, then, if you want to make a short
opening statement you may or we can go straight into questions.
Dr Calland: Thank you very much, my Lord Chairman.
My name is Dr Tony Calland and I am Chairman of the British Medical
Association's Medical Ethics Committee. I would like to start
with a very brief opening statement, if I may. The BMA is very
grateful to the Committee for asking us to give evidence today
and we welcome the attention that is being given to this issue
by the Committee. About 900 people die in the UK every year awaiting
a donated organ and obviously there are still many more people
on dialysis at that time. We welcomed the Organ Donation Taskforce
first report and the recommendations it made and we welcome the
fact that the Government have accepted these. We look forward
very much to the second report and we hope this work will increase
the pool of potential donors. I think it is important that the
European Union works together on this to facilitate the sharing
of experience and enhanced co-operation and we do believe that
having international safety safeguards are very important. We
think the infrastructure improvements that would be made in the
United Kingdom and the EU will lead to better systems and we would
hope to see an increase in the number of potential donors not
only from the infrastructure improvements that would be made but
also from a change to presumed consent. That is really all we
need to say as an opening statement.
Q384 Chairman: Many of those
things we will want to pursue in more detail through the questions.
Can you begin by describing much more the role of the BMA in relation
to organ donation and transplant? We are interested in knowing
what information you have about the extent to which the BMA view
is supported by your members in England, as well as in Scotland
and in Wales—and, were Lord Eames here he would be saying
in Northern Ireland too.
Dr Calland: Absolutely. The British Medical
Association has an annual conference which is attended by between
400 and 500 representatives of the profession representing the
different craft committees in the different regions of the United
Kingdom, including the Celtic nations. We debate the motions put
to conference and if those motions are passed it forms the basis
of policy for the British Medical Association. Since 1999 we have
had a policy of wishing to move to a system of presumed consent,
to improve the rate of organ donation—so we have been quite
long in this business, as it were—and we have been pushing
at regular intervals, certainly in the last few years, to bring
about a change and a recognition of the problem. Wearing one of
my other hats—I am Chairman of the Welsh Council of the
BMA—I can certainly confirm that in Wales we have been working
with Kidney Wales to raise the profile of the problem in Wales
and I know colleagues in Scotland and in Northern Ireland have
been doing the same as well. I can say with some confidence that
the position of the BMA that we are going to explain today is
supported by our membership or at least a majority of our membership
and it is also supported by other nations apart from England.
Q385 Chairman: Could you go
on to say what exchanges you have with the European Union and
other countries? Following up on what you have just said, we have
been interested that Spain, although they have presumed consent,
do not see it as central to their activity and their success.
I wondered if you had had discussions across and whether that
had affected your thinking in any way.
Dr Nathanson: Perhaps I could take that question.
I am Dr Vivienne Nathanson. I am Director of Professional Activities
at the BMA, although I am more usually described as Head of Science
and Ethics. One of the sets of relationships that the BMA has
is that we are members of a series of European medical associations.
There is a European GPs group; a European hospital consultants
group; a European junior doctors group; and a European medical
association, the CPME. We happen to hold the Presidency of that
at the moment. Dr Calland's predecessor, as Chair of Ethics, is
President of the European doctors. Organ transplantation has been
on their agenda at different times but one of the things we find
is that doctors are very aware that the first thing you have to
do to increase the number of donations is to get the infrastructure
right, and that that is arguably the most important thing and
it is extremely complex. It is one of the reasons why we welcome
the taskforce report so much because it really does deal with
all of those issues. It challenges many of the ways in which we
are currently organised and almost says, "If we had a completely
clean sheet, where would we start?" which we think is very
positive. That is very much the way doctors across Europe are
looking at this. There is not complete consensus on presumed consent.
There are some people who do not like it; there are others who
say, "Let's get the infrastructure right first and then look
at it." In many ways, that is exactly where we are. We are
very much in favour of presumed consent but we also recognise
that it can only work if you have the infrastructure right. It
is a terrible waste of time to increase the number of people who
say yes if you then cannot benefit anybody by taking those organs
and using them in the proper way. That is much the same in Europe.
Interestingly, it is also very much on the agenda of the World
Medical Association. That includes doctors from 85 nations at
the moment, including Canada and the USA, much of EU Europe and
many other countries: Africa, South America and so on. Again,
exactly the same debate goes on: How do we get the best infrastructure?
What is the best infrastructure? How do we maximise the yeses
to benefit from all of those? How do we persuade people to say
yes? Many countries are looking at presumed consent and saying,
"What is the percentage extra that this will offer?"
The debate always starts in exactly the same place, that doctors
in every country see people dying on their organ donor waiting
list—not something we expected when these were set up—and
say, "We really have to do something about this. We have
to find the best ways to help." Not all countries have the
opportunity of cutting health costs by increasing their numbers
of renal transplants, as we do, because in a non-nationalised
health service it is not necessarily a benefit to the state in
that way, but for us there is that double-positive. You have heard
of the positive whammy but this is the double positive: it saves
money as well as being the humane and appropriate treatment.
Q386 Lord Lea of Crondall:
I thought it was a very useful clarification on this balancing
act between presumed consent and the infrastructure, but can I
just go back to the Chairman's question about how salient Europe,
in some sense—the EU and all the rest of it—is in
the BMA's work. Twenty years ago, I was doing the TUC stuff on
Europe, amongst other things, and I introduced the BMA to one
or two people in Brussels. At that time there was hardly any Brussels
dimension: I think there was some mutual recognition of qualifications
or something. Anyhow, where does Brussels fit in generally to
the work of the BMA? Is it normally benchmarking, best practice,
or how far do you see the Directive route, which more or less
is a mandatory requirement?
Dr Nathanson: We have recognised for a long
time the importance of Europe. For many years we bought time from
professional advocates in Europe. We decided some 12 years ago
that that was not good enough and we now have our own office in
Brussels, a permanent office, permanently staffed, because we
think it is so important to be part of the process, because Directives
can increase patient safety or decrease it or produce bureaucracy
that stops you going for the highest possible denominator and
move you to the lowest. We are very committed to working in Europe
to make sure that European legislation, Directives, et cetera,
that have a medical, health, public health or clinical focus of
any sort are looked at, so that we can maximise the benefits to
patients. That is the way we work on it. Every now and then you
see a Directive which makes you recoil in horror simply because
it seems to be completely contrary to the way we organise medicine
but, generally speaking, we find them useful bits of legislation
that we can work with, and say, "How can we use this as an
opportunity to improve patient care, patient safety, the working
conditions of doctors?" -particularly things like the European
Working Time Directive, how that impinges on patient safety—so
we are very committed to Europe. We think there are opportunities.
The danger is that you could end up with so much bureaucracy that
you hamstring the doctors' ability to say, "In this patient's
case a non-standard answer is the only proper answer."
Q387 Lord Lea of Crondall:
Forgive me, but perhaps I could clarify one thing you have said.
You wear two hats in fact. You are wearing an industrial relations
hat on behalf of doctors in their contracts and the Working Time
Directive—junior hospital doctors and all that—and
yet, wearing your professional hat, you could be concerned that
you cannot go on for 24 hours in a transplant. That dilemma is
one you have to address.
Dr Nathanson: Absolutely. That is one of the
dichotomies for the BMA because we are a voluntary professional
association, which is one side of the BMA, and we are a trade
union, but very often those things come together because what
you want to do is to make sure that the system works. For example,
with the taskforce making the point that some of the transplant
co-ordinators are working 24 hours, that cannot be good for them,
it cannot be good for the donor and the donor's family, and it
cannot be good for the recipients. There needs, as the taskforce
says, to be a splitting of that role: more people to give the
best possible care, in that broadest concept, to all the people
involved.
Chairman: You have mentioned health and
I am going to move on to the Lord Trefgarne who is going to ask
you about the safety and quality of organs.
Q388 Lord Trefgarne: We hear
that there is talk of a Directive on the Safety and Quality of
Organs—another EU Directive. I think the BMA have expressed
some concerns about that and I would like to hear about those,
please.
Dr Nathanson: I think the concern comes about
from worry about the building up a bureaucracy which may have
very little benefit to patients in the UK. We are starting from
the fact, looking at what happens in the UK, that the system has
faults in terms of it is not adequately resourced but there is
no problem that we have seen in terms of quality, patient safety
issues. We want to spend money, resources, time, new people, efforts
in making sure that we reinforce the UK system so that we are
better able to use more organs, in the hope that we will also
find other ways of using that same system to produce more donors.
There is no evidence that we have seen of poor quality. We recognise
that if you had, for example, a Europe-wide transplant authority
that allocated organs as they came in, the UK could potentially
be a net recipient at the moment. We are very unlikely to be a
major exporter because we are one of the poorest at recruiting
donors. Nevertheless, we still think it is better to work within
the country to make sure of patient safety, and then to share
those patient safety measures European-wide so that we all move
things up. Again it comes back to the question: If we think we
have it right—and we do—in terms of quality, would
we gain from this or would we instead run the risk of being bureaucratically
tied and unable to move things and to develop? We have a significant
note of caution about producing a new European body.
Q389 Lord Trefgarne: You do
not see any prospect of increasing the availability of organs
by having access to a European supply which we rather do not at
the moment?
Dr Nathanson: I think we would be likely to
be an importer of organs simply because we are one of the lowest
recruiters—which is a good thing—but there is a second
issue which is that we do need to ask the questions whether for
all our populations in all the countries in Europe a European-wide
donor register would increase or decrease national donation levels.
We rely on altruism, we rely on a feeling of neighbourliness,
and I do not know that that would be increased by being European-wide.
My feeling is that people want to benefit people in their communities,
the people they know, and they may not feel as altruistically
for a pan-European thing, even though we would be net beneficiaries
to start with.
Q390 Chairman: We have heard
from other evidence that local brings best results, except when
there are specialist organs or particularly difficult matches.
I declare an interest now as a trustee of a charity that deals
with children with hypoplastic left heart syndrome who are all
going to need transplants later on. We have to make these declarations
at the point when we are going to ask this sort of question. Can
you see that there might be, if you like, a two-tier system in
terms of complexity in Europe? I know Spain has given hearts to
children.
Dr Nathanson: There already is, of course, a
system which allows exchange, so that the matches that are done
are: "Where are the local donors?" Local is very local
and UK-wide, in that sense. We export about 20 organs a year,
as I understand it, from the UK to elsewhere in Europe under this
system and we receive some back. That is particularly important
for organs which are not necessarily more specialised but more
rarely available. Most people who die are not children, thankfully.
It is important for organs where there is always going to be a
very limited pool to have the widest possible availability but
then again we also know that, for heart survival, short distances,
short timescales may be important as well, so it is always a balance.
More interesting would be whether a European system would offer
any help to us with our very serious problem in recruiting donors
from our black and minority ethnic community or with the right
tissue types for those people who already have an over-representation
of many of the diseases that lead to a need for transplantation
in adults. We are not good at recruiting from that group and we
certainly need to learn how to do that better because, even with
presumed consent, we do not want a very high percentage dropping
out from within the one community which can only benefit from
donation within that community.
Chairman: That sort of action plan Lord
Wade is going to pursue.
Q391 Lord Wade of Chorlton:
My question was to build up on what you have just said, but to
understand clearly what added value you see out of the proposals
for an EU-led Action Plan.
Dr Nathanson: The truth of this is that we see
very little benefit from having a European centre of bureaucracy
around this. We do think the learning opportunities are very important
and the exchange of information, the sharing of research, particularly
research about: How do you affect public opinion? How do you reach
the hard-to-reach groups? There are different hard-to-reach groups
in all of our countries but we all have them. Which are the groups
that do not donate? Why do they not donate? What is it that makes
a difference? That sharing of experience beyond just the publishing
of academic articles is extremely important. The publishing of
academic articles, of course, will continue to have a place and
we have been very interested by a study that said in many countries
in Europe the percentage of the population who are Catholic had
a very positive impact on donation rates. That is something we
need to learn. This is a community that has been persuaded this
is a good thing to do, so how do we learn that with other communities?
Those kinds of exchanges of experience will help. It also means
that different countries will try different legislative guidance
systems and we can see what happens. We can measure what happens
and then see whether this is something that will be worth other
countries importing.
Q392 Lord Wade of Chorlton:
You seem to be suggesting that the solution for how you can build
up more organs available in the UK is really our problem; that
we might learn better ways of doing it but, at the end of the
day, it is us who has to do it. Is that right?
Dr Nathanson: I think that is absolutely right.
Q393 Lord Wade of Chorlton:
And that this particular Action Plan in itself is not going to
help that; it is going to be each individual country to use its
knowledge that it might derive from it.
Dr Nathanson: Indeed. The best thing that Europe
can do is to encourage countries to help them make the legislation
simple and effective where legislation is needed.
Q394 Lord Wade of Chorlton:
You mentioned earlier that we appear to be low down on the scale.
Could you give me some indication of what the various rates of
organ donations are and how we compare with other countries?
Dr Nathanson: The highest rate is Spain, which
is at around 35 donors per million population. The lowest is Greece,
which is around seven. We are near the bottom, at around 12, 13,
14 per million—so Spain and other countries have two or
three times the level. There is quite a steep curve coming down,
but many countries in Europe hit between 15 and 25 and we should
certainly be doing that. If we did that, we would be almost doubling
potentially. That would make a very significant difference if
we have the infrastructure to then benefit from people's gift.
Q395 Baroness Perry of Southwark:
I would like to get clear in my mind what the EU Action Plan would
do in practical terms. Would it give funding for conferences which
would bring people together? I am really conscious that doctors
and academics of all kinds do find ways of talking to each other
and meeting together and sharing their experience and I am sure
this happens in the transplant field. What more would an EU Action
Plan do? Would it just be money?
Dr Nathanson: It does not necessarily need to
be money. I think national governments can do that themselves.
It is about encouraging a multidisciplinary exchange of expertise
and information. It is about making sure that there is a good
exchange of best practice; that everybody in different countries
learns from what other people are doing. It is also about stimulating,
perhaps, multinational research, multinational research that is
not at the very clinical end—not about whether particular
anti-rejection therapy works or not, because that is already there,
that is already funded and that tends to work multinationally—but
more around the social determinants of donation, the experience
of donor families, the experience of recipients and so on, because
that is the area in which it is most difficult to learn.
Q396 Baroness Perry of Southwark:
Yes, I do understand that but you are using words like "stimulating"
and I am just not understanding what this mechanism is. What is
the EU going to do that will make these things happen in a way
that they are not happening now?
Dr Nathanson: It can bring people together,
perhaps in conferences, perhaps just in steering groups. For example,
the Organ Taskforce in the UK has suggested that there needs to
be a standing committee looking at transplantation, at the ethics
and law and so on. I think that would be a good thing to have
Europe-wide. How do we make sure, not that it is flexible but
that it gives people advice on how best to frame the law and public
policy, because I think these are extraordinarily difficult areas.
People can struggle with finding the best ways to frame the law,
that allows good practice and stops bad practice without becoming
such a bureaucratic burden that you have to turn your health system
on its head. It is that encouragement of that kind of very high
level debate and public policy that would be a very good thing
for Europe to do.
Q397 Baroness Neuberger: I
need to declare an interest before I start. First, I have a brother-in-law
who is deeply involved in these issues, James Neuberger, and,
also, I am a former member both of the BMA's Ethics Committee
and of the GMC's Standards Committee. Having declared those interests,
you have answered part of this but it is really a question of
what your view is of the recommendations that the UK Department
of Health Organ Donation Taskforce came up with in January. Clearly,
on the presumed consent area you feel that it could have gone
further, and Lord Lea is going to say more about that. Are there
other areas where you think it could have gone further? Were you
satisfied broadly with what it said?
Dr Calland: We were broadly satisfied with what
it did say and we are very supportive of that. We think there
is quite a lot of evidence to show that infrastructure is a key
part of this. I suspect that we have not reached the pinnacle
of where we could have got to in this country in terms of infrastructure,
a substantial investment in the infrastructure. By that I mean
transplant co-ordinators, having enough resources into transplant
teams, having people in A&E departments well enough aware
of when a potential donor may be a potential donor—because
I think quite a lot of people are lost to the system at that point.
We are very supportive of that and hope that those changes take
place. Certainly in Spain the evidence has shown, whether you
look at presumed consent or not in Spain, that because of their
infrastructure they have significantly improved the situation.
Yes, we are very supportive of it. The bit we felt was missing,
which may be coming later, was about presumed consent. Would you
like me to expand about presumed consent?
Lord Lea of Crondall: You have seen the
sort of question we were going to come up with. We are at the
stage in the inquiry where we have run into a little bit of a
contradiction of evidence almost, and maybe it is a failure to
get, as it were, apples to compare with apples. On the one hand,
some people say, "There is a missing ingredient and the key
missing ingredient is the infrastructure," almost as if,
therefore, the queue of people who die because there are not enough
donors is a sort of red herring. That is a bit counterintuitive,
so how would you make this balance? I do not know how many witnesses
there were, but certainly one from Spain, whose evidence impressed
us, did more or less say that the infrastructure question was
a lot more important than the availability of volunteers—and
yet a lot of us have been left feeling very confused about that.
Q398 Chairman: Infrastructure
versus presumed consent.
Dr Calland: I do not think there should be a
contest of infrastructure versus presumed consent because I think
they are all part of a jigsaw. As I said, there is plenty of evidence
to show that infrastructure is a part of it but there is also
evidence to show that presumed consent is a part of it. I would
like to make it quite clear where the BMA is on presumed consent
because it is a difficult and confusing issue. In simple terms
we are supportive of what might be called "soft presumed
consent"[10],
but before we would support that we would need there to be a very
clear publicity campaign so that the understanding of what is
meant by presumed consent is much better understood by the general
public. We would probably not want to see, although I am not sure
how you avoid it, the kind of debate we had a couple of months
ago, when the Chief Medical Officer and the Prime Minister made
comments about presumed consent. That, in my view, was unhelpful.
Q399 Chairman: The "body
snatchers" suggestion
Dr Calland: It drove the Daily Mail and
various other people into explaining to people that all of a sudden
they were going to be owned by the Government and their organs
would be "untimely ripped" from them. That is not what
we want from this. We want for people to understand that there
is a change to the default position, in a way that anybody who
wanted to opt out would have many different ways to do it easily,
so that they could do it. We want for the publicity to generate
the conversations across dinner tables throughout the land, so
that people have some idea of what their family members' feelings
would be. There is lots of evidence to show that one of the difficulties
that relatives have with coming to terms with the death of their
loved one they then have to be asked, "Do you mind if we
have some of their organs?" It is a very difficult question
to ask at an even more difficult time. If we had a system whereby
the public understood about presumed consent and understood that
the implication would be that if they did not know and the deceased
had not opted out then it would be assumed that they would consent
to that. It is just moving that difficulty of the decision a little
bit more. It is making it a little bit more easy for the relatives
and making them a little less likely to refuse. That is the position
that we want to get to with presumed consent, so that donation
is looked upon as the usual thing to do rather than the unusual
thing to do. I do not think we believe it is the magic bullet
for a minute; but it is a piece of the jigsaw which, if properly
implemented, would hold all the other bits together. I do not
personally believe that it would dramatically improve the rate
of donation in itself but I think, as I have said, that being
part of the jigsaw it would improve the rates, and there is no
point in improving the rates through presumed consent if you do
not have an infrastructure in place to support the numbers if
they suddenly come rushing through. You only have to look at Spain's
figures: in 1989 they had a waiting list of 5,000; in 2004 they
had a waiting list of 4,000. That, in your own evidence in the
yellow papers here, is the only country which has made a significant
reduction over that period of time. Britain has got worse in that
time.
10 Soft presumed consent would mean that when someone
dies in circumstances which make donation possible, the register
is checked to see whether they had opted out of donation. If they
had not opted out, relatives would be asked if they know of any
unregistered objection to donation. In the absence of any objection,
donation would proceed unless to do so would cause severe distress
to relatives. Back
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