Supplementary memorandum by Patient Concern
Patient Concern regrets being unable to attend
the evidence session on 24 January and is grateful for the opportunity
to answer the questions asked at the session.
Q1. What do you see as the major obstacles
to sufficient organs being available for transplant within the
UK?
In simple human terms: inertia, lack of information,
reluctance to contemplate death. The fact that over 2,000 people
joined the donor register within three days of Sir Liam Donaldson's
announcement that he now favours presumed consent indicates how
much can be done to overcome these obstacles.
We noted that in an earlier session of this
committee some noble Lords were asking how to go about joining
the register and if it was a difficult process. If members of
the committee, who have some expertise in the area, feel the need
to ask such questions, it is hardly surprising that a large section
of the general public remain in ignorance.
The Bishop of Southwark, speaking on Thought
for the Day on BBC Radio 4 related his difficulties in replacing
a lost donor card, when he was told by various agencies that they
"hadn't seen one for years". That is our experience
too.
Patient Concern has a small advisory board and
no member of it has ever been asked, at a doctor's surgery, hospital
or blood donor unit, if they had thought about organ donation.
Why not? We incentivise doctors to test for hypertension etc,
why not for ensuring that patients have the full information about
organ donation?
A powerful message about the need for blood
donors has been running on TV for some time. We cannot remember
when the last such push towards organ donation took place.
A further obstacle is mistrust. The scandal
of Alder Hey and other hospitals in the UK shook confidence in
the medical profession in the area of organ donation and goes
some way to explaining why we have performed so poorly in the
last few years.
We have no way of knowing what proportion of
patients have serious doubts over the concept of brain stem death
(see Melanie Phillips' powerful articles in the Daily Mail
and Spectator) and how many are inclined to the view
that a patient cannot be truly dead while the heart is beating
and blood circulating, so that it is actually the act of removing
organs that brings about death. Tests for brain stem death vary
between countries and it is a matter for some disquiet that a
patient might be "dead" in one country but not another.
Following Melanie Phillips' articles several stories emerged of
people who had been classed as brain stem dead but who subsequently
recovered.
Gordon Brown's idea that hospitals will be rated
according to the number of donors they produce is likely to fuel
the suspicion that some people will be more valuable as donors
than as sick patients.
We suggested a number of possible practical
ways of boosting the donor rate in our submission and others have
added to them. We are very disappointed that the Donation Task
Force, after a year of work, did not take the opportunity to draw
up a list of their own.
Q2. What are your views on the issues from
a patient's perspective of the benefits of an EU Directive on
organ quality and safety, and how would you think the benefits
of the imposition of high standards of quality and safety should
be balanced against a possible reduction in the supply of organs
for donation?
Patients must be confident that standards of
quality are maintained and an EU standard would be useful and
reassuring. It should be neither a "minimum", as the
medical establishment has suggested, nor "gold-plated"
as they fear. It should be possible to agree on safety and quality
criteria covering every stage including procurement, preservation
and transportation while still leaving room for clinical judgement.
There have been recent reports in the UK press
that organs from drug addicts etc are being used. If this is happening
it is essential that the outcomes are strictly monitored and the
results shared openly with patients.
However, we agree with the Jeanette Crizzle
Trust that questions over quality arise because of the scarcity
of donor organs. If the government shows genuine commitment to
tackling this problem, that should cut down the need for clinical
judgement on marginal organs.
According to recent figures from UK Transplant
over 3,500 organs are lost each year in the UK because potential
donors are not identified, relatives are not asked or families
have refused.
Q3. What you think about the current consent
processes for organ donation in the UK and what do you think about
proposals for a move to opt out or presumed consent?
Presumed consent would turn us from volunteers
into conscripts—unless we register as conscientious objectors.
Those who feel they have to opt out, for whatever reason, may
fear discrimination. Over the past few weeks, when I have been
upholding the principle of explicit consent (while at the same
time supporting all efforts to boost the donor pool) I have been
met with such a level of personal abuse and vitriolic insults
that I have become convinced that their fears are well founded.
Such a system would make the term "donation"
redundant. A donation is something freely gifted, not taken by
default.
Supporters of the presumed consent system seem
to hail it as a magical quick fix and the success in Spain is
constantly quoted. They fail to mention that Sweden, where a presumed
consent system has been in force since 1996, has a lower donation
rate than the UK. The reasons behind Spain's increasing donation
numbers have been covered in the submissions so I shall not repeat
them.
There has been powerful "special pleading"
amongst the submissions and in the media coverage from groups
representing those needing transplants. Naturally feelings run
high and those who are suffering find it hard to appreciate that
there are ethical considerations on the other side. I admit that
if I had a relative dying from heart disease I might support presumed
consent, from an emotional standpoint. That does not make it right.
If I had a kidnapped relative, I would probably call for the ransom
to be paid—but it still would not be right. We cannot allow
the needs of a small minority to undermine the rights of the majority
to make a conscious decision on what happens to their bodies after
death. Noting the UK Transplant figures, it should be possible
to meet their needs without a change in the law.
When the Human Tissue Act was being drawn up,
after the Alder Hey scandal, Sir Liam Donaldson said: "Patients
and relatives need to be in control. They need to know exactly
what they are consenting to". He has recently performed a
U-turn. The Human Tissue Act came into force in 2005 and has done
a great deal to restore confidence in the medical profession.
Altering the Act in a fundamental way at this very early stage
risks damaging confidence in both the medical profession and the
government.
The BMA has long supported a change in the consent
system. We are concerned that while the BMA supports presumed
consent for organ donation they oppose this same system for uploading
patients' records to the electronic data base. This contradictory
position might lead patients to suspect that "ethics"
for the BMA are influenced by what is best for doctors.
The Organ Donation Task Force report makes the
point that many medics are concerned that carrying a donor card
or even joining the donor register does not meet the normal standard
of informed consent. This standard would be completely jettisoned
by a presumed consent system. The imperative is to ensure that
people are aware of the issues and the processes of transplant.
This will convince many people that donation is the right way
for them, while there may be others will find that more knowledge
discourages them from offering this gift—but it is the only
ethical way to go.
Suggestions of a mandatory choice have been
made during the submissions. This would be preferable to presumed
consent but the prospect of prosecuting/fining 20 year olds (or
for that matter 80 year olds) who do not wish to make a decision
on what should happen to their body after death is extremely uncomfortable.
The suggestion of three possible choices might be considered:
(1) yes to organ donation, (2) no to organ donation, (3) the decision
is to rest with the family when the time comes. If these options
were attached, say, to the census, then everyone would have the
choice to reconsider every few years in the light of events.
Q4. Why do you think family refusal rates
are high within the UK, particularly within certain ethnic minority
groups? To what extent would the situation be improved if doctors/transplant
coordinators could spend more time explaining the issues to relatives
of potential donors?
It is always difficult to come to terms with
the death of a loved one and even more difficult to contemplate
donating organs from a person who is breathing, with blood circulating
and limbs moving.
Spanish co-ordinators report spending as long
as 18 hours with a family, giving them time to come to terms with
the idea, helping them to work through their feelings about it.
Too often, in this country, families are approached by a busy
doctor who may have no training in this particular area. A great
deal depends on the timing of the request and the amount of support
given to the family.
While we would all accept that we have no use
for organs once we are dead, many people cannot bear the thought
of their loved ones being mutilated, "messed about".
The reverence with which we treat a dead body, the viewing at
the funeral home, the elaborate burial ceremonies, indicates a
deep feeling for the sanctity of the body which prevents some
relatives from giving permission for donation.
It is vital not to add to the burden of bereavement
with any suggestion of undue pressure on families of potential
donors or any consent law that would leave those who feel they
must refuse, for whatever reason, with feelings of guilt.
One of the reasons frequently given for refusal
is that the family don't know what the deceased would have wanted.
Future publicity campaigns should emphasise the importance of
anyone willing to donate discussing this with the family, long
before the occasion arises.
We might expect that among ethnic minorities,
who are more likely to need a transplant, awareness would be higher
and this would lead to more willing families, yet 70% refuse requests
for donation. We need more research on the reasons for this: is
it lack of information, alienation from the main body of society,
or are there religious and cultural barriers that need understanding?
Perhaps we need to make much more effort to involve community
leaders in an education programme.
The point was well made by Ms Gibb, from her
experience, that the idea that everyone would understand a change
in the consent system—those with learning difficulties,
non-English speakers, travellers etc.—is laughable. Among
these groups we believe that a change to presumed consent would
cause confusion at best and resentment at worst.
Q5. How has your organisation managed to place
organ transplantation on the social and political agenda? To what
extent is the EU involvement is going to be a help or not or do
you think it is not going to have much impact?
Patient Concern is a generic "watchdog"
organisation whose aim is patient choice and empowerment. Since
the issue of presumed consent has come to the fore we have had
the opportunity, through many media interviews and requested articles,
to emphasise the current problems and suggest what could be done
about them. It has been obvious from the response that widespread
education of the facts of transplantation is desperately needed.
We have in production the tenth leaflet in our
series of "patient survival guides" which will deal
with organ transplantation. These leaflets attempt to give an
"insider" view which goes far beyond the standard handouts
and enables patients to weigh up pros and cons before making decisions.
Any initiatives taken by the EU, if given sufficient
publicity, should succeed in the essential raising of awareness.
The directive on quality and safety is one example. It would be
helpful if the EU made it a priority to ensure that member states
standardise training of transplant coordinators according to best
practice. Another positive step would be standardising tests for
brain stem death to include electro-encephalography and arteriography
-which would raise the bar in countries like the UK and ensure
that "dead" does not mean different things in different
countries.
Q6. What is your view about the desirability
of a European donor card?
The launch of a European donor card would undoubtedly
raise awareness of the issues, which would be an undoubted plus.
With this in mind, it might be worth starting a high profile debate
among member states: yes or no to a European donor card?
Beyond that, we see little point in the possession
of another card and accept UK Transplant's point that it could
even be confusing. When the legislation in member states varies
so much, it might be difficult for patients to understand just
what they were agreeing to.
February 2008
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