Examination of Witnesses (Questions 260
- 274)
THURSDAY 28 FEBRUARY 2008
Dr Paul Murphy
Q260 Lord Lea of Crondall:
Why not?
Dr Murphy: You know doctors perhaps as well
as I and they tend not to respond well to guidelines over how
patients should be managed. They tolerate targets badly enough;
to tell doctors how they should manage a particular clinical condition
they respond to very badly indeed.
Q261 Lord Lea of Crondall:
Perhaps we could use some other word, benchmarks or some other
word as to what can be done.
Dr Murphy: The Intensive Care Society has issued
a statement in a more recent publication that to diagnose brain-stem
death should be pursued wherever possible, because it is the diagnosis
of death rather than the diagnosis of futility that requires the
withdrawal of care. That is a long way off from influencing what
happens at 2.00 am on a Saturday night in a busy A&E department,
frankly.
Q262 Baroness Morgan of Huyton:
Dr Murphy, is there no alternative to ICU that you can see. I
can understand why clinicians would think the priority for the
ICU bed is somebody who potentially is going to survive from something
else—because we all know there is a shortage of ICU beds.
Is there not an alternative that could be applied within A&E
to help facilitate donation?
Dr Murphy: Increasingly we are trying to support
accident and emergency departments to facilitate donation, and,
indeed, there are examples of good practice in that regard around
the country. But I am an intensive care clinician and I have to
say that my personal view is that part of the job of intensive
care is to sweep up and an A&E department is not a place to
die really.
Q263 Chairman: Thank you,
that is an important question. To get back into the European dimension,
you mention that information is difficult to come by and you are
given a picture of a range of different survival rates and provision.
Would it be helpful if the EU tried to get some comparisons? Would
that be useful?
Dr Murphy: It would be very useful to have comparative
data on how different Member States and different medical professions
within those states handle these very serious life-threatening
emergencies. Anecdotally, I know from my conversations with colleagues
in Spain that they do not withdraw care. The concept of futility
is an alien one to them. They would manage a patient until brain
death evolves on an intensive care unit. It would not occur to
them to withdraw care in an accident and emergency department
because a judgment of futility had been made.
Chairman: That is useful.
Q264 Lord Trefgarne: Dr Murphy
has just been saying something crucially important. Is he saying
that different management of certain very serious cases in A&E
facilities, cases where the chances of saving life are almost
nil, would result in a greater flow of organs for transplant in
a circumstance where everybody knows there is an acute shortage?
Dr Murphy: Absolutely.
Lord Trefgarne: Dear, oh dear.
Chairman: We are straying into Lady Perry's
area. Would you like to pick up from here, Lady Perry?
Q265 Baroness Perry of Southwark:
Dr Murphy, I was particularly interested in the section in your
evidence about the ethical issues and I wonder if you could give
us your view of the UK Transplant report which says that many
potential organ donors are not subjected to brain-stem death tests
and are not considered as organ donors. What evidence can you
give us about the way in which cases suitable for organ donation
are dealt with in ICU, as you have been talking about A&E.
Perhaps you could separate that out, both after brain-stem death
and in non-heart-beating cases.
Dr Murphy: Could I deal, first of all, with
donation after brain-stem death. That is the standard model for
donation and non-heart-beating donation is very much more a "work
in progress" if I might describe it in that fashion. The
Committee is obviously well aware, with the headline findings
from the potential donor audit that were published 18 months ago.
They indicated that there are between 400 and 600 patients every
year who die on intensive care in whom the diagnosis of brain-stem
death was likely, in the opinion of the auditors, but that diagnosis
was not made. The paper did not really go into why that was the
case. I have conducted my own sub-analysis of that group of patients.
The biggest single reason why those patients do not go on to have
their brain-stem death diagnosed is that they are physiological
unstable, cardiovascularly unstable. To that I must add the rider
that the clinicians also felt it inappropriate to correct that
instability—and my experience is that it is easily correctable—to
thereby allow brain-stem death to be diagnosed and thereby preserve
the potential to donate in the event of brain-stem death being
diagnosed. That was around 30% of those 600 patients a year. For
an almost similar number, I could find no reason at all why brain-stem
death was not diagnosed. Thereafter, there were quantitatively
less important factors. Sometimes brain-stem death would not be
diagnosed because the clinicians were already aware that the family
would say no were an approach over donation to be made. Sometimes
the clinicians were making a judgment over the medical unsuitability
of that patient to be a donor. That is an important issue because
there are very few absolute contraindications to donation and
I would feel that, at the very least, a referral to an expert
like the donor transplant co-ordinators should be made before
such a judgment is made. As I say, the biggest reasons appear
to be either, "I'm sorry, I don't know. I can't give you
an answer" or "There is cardiovascular instability."
This goes back to the ethical issues that are central to so many
of these obstacles: to what extent can a doctor intervene to maintain
a patient's potential to donate when those interventions are in
no way in the physical best interests of that patient but rather
in the best interests of a third party; that is, a recipient down
the line. What does "best interest" mean? Is it restricted
to the physical or does it rather embrace much more about that
patient and how they would want, as a person, their death to be
handled, and would they wish donation to be considered as part
of the end-of-life care pathway?
Chairman: That has significant implications
for the whole opt-out/opt-in debate.
Q266 Baroness Perry of Southwark:
Perhaps, drawing on that, could you tell us what the staff working
in ICUs generally identify as the main obstacles to organ donation
and what would be the impact of the introduction of a system of
presumed consent?
Dr Murphy: I do not think there is any single
answer to that. It may disappoint you to learn that not all staff
in an intensive care unit really have donation on their agenda.
It is not—which I think is a phrase used in the taskforce
report—"core business". It is not something that
the intensive care unit has on its mind on a day-to-day basis.
For some units, that is not surprising because the number of potential
donors is relatively small. Some units may only see two or three
potential donors a year—I see 30 or 40, so it is part of
what we do most days, most weeks—so they perhaps do not
have an opinion at all. Some of my more truculent colleagues would
feel irritated. They feel that they are under pressure from the
transplantation lobby in general and certainly UK Transplant in
particular. They are under pressure to produce organs: "Don't
they realise that my patients have to die to be donors?"
The more reasonable ones would point, first of all, to the refusal
rate, a refusal rate of 40%. When we know that all the surveys
in the street indicate public support of 80/85/90%, why is there
such a gap between what people would want to happen to them and
what relatives will allow to happen to them?
Lord Lea of Crondall: Could I check something
which I have been worrying about for a bit now. Is there a confusion
of nomenclature to some extent? In your opening remark, you talked
about "donation rate". On the face of it, that is not
the same as the statistic about donor registration; it is what
you might call the outcome of a donation rate in an intensive
care unit. I mean, there is no obvious way in which the statistic
that we have all been looking at; namely potential donors equals
a registration card—
Chairman: What is the question Lord Lea?
Q267 Lord Lea of Crondall:
What do you mean by donation rate?
Dr Murphy: From a unit or a national rate or
both?
Q268 Lord Lea of Crondall:
You used the phrase "donation rate" as I recall. I just
want to know what you mean by that.
Dr Murphy: I guess that for an intensive care
unit—and I am being vague because the data does not come
back to intensive care units systematically, and certainly my
chief executive and my medical director have no idea whether potential
donors in my hospital are all being identified, what the conversion
rate, what the consent rates would be—by "donation
rate" I mean, first of all, how many potential donors are
being missed, and, of those potential donors, how many are being
truly considered to be donors: what percentage of families are
being asked and what is the consent rate from those families.
They all make up the conversion rate.
Chairman: We are going to have to move
on because of the time, but that is a useful question, Lord Lea.
Thank you.
Q269 Baroness Neuberger: I
have to declare an interest to start because I have a brother-in-law
James Neuberger who is deeply involved in transplantation, which
you probably realise. In your evidence to us you describe "the
miserable consent rates for donation" amongst black and minority
ethnic groups. You also point out to us, very importantly, that
there is a mistake around in the ether confusing the impact of
faith and culture on people's views on donation—and you
take the example of South Asian Muslims and African Muslims. What
do you and your colleagues really believe to be the reasons for
low organ donation rates amongst some ethnic minority groups?
Do you think socio-economic circumstance is part of it? What should
we be doing about it?
Dr Murphy: I think—and this is not terribly
helpful—that the donation rates from the black and minority
ethnic groups are the biggest single challenge facing transplantation.
That is a reflection of how difficult they are. As I think I said
in my written evidence, the failure to gain consent for donation
from the minority groups does not come in isolation. It does not
come as a surprise to clinicians who work with patients from those
groups in intensive care and, more commonly, their families because
it is simply one facet of what is, by and large, often an unsatisfactory
relationship between the healthcare professionals and the family.
If there is one focus that generates the tension between those
two groups, it seems to be about authority. Who has the authority
to make seminal decisions about life and death, about the withdrawal
of care and futility, about the diagnosis of brain death and what
does that mean? Who has the authority to make those decisions?
Is it the healthcare professionals—as they believe it is—or
is it the family? It seems to be with many minority ethnic groups
that that is the fundamental point of disagreement. Once that
disagreement has been defined, it thereby defines the whole relationship
that you have with that family. If at the end of the day the outcome
is death, and then you approach the family with another request
that involves a surgical procedure to remove organs, in the background
to all that are different concepts over how the relative is handled
in the immediate aftermath of death. I would point out that I
am not sure ICU staff necessarily have enough knowledge about
how the ethnic groups have different views on the aftermath of
death and the disposal of the remains. I do not think we can take
that as a given at all.
Q270 Baroness Neuberger: I
think you are right about that, incidentally. Speaking from a
Jewish perspective, I think that is true.
Dr Murphy: I am sure there are pockets, again,
of excellence, but is it on the curriculum of intensive care medicine?
Of course not.
Q271 Lord Lea of Crondall:
To what extent have you benefited from activity at the EU level
around organ donation? How might action at EU level to strengthen
the co-operation and the exchange of information between professionals
working in ICU in different Member States benefit you and your
colleagues in the future?
Dr Murphy: My principal role in the transplantation
pathway field is in donor identification and donor management
prior to organ procurement. That is my expertise. I recognise
the importance of other aspects of the EU Commission's report
into maintaining a minimum quality of retrieved organs for transplantation,
issues over organ trafficking. In terms of improving donor identification,
improving the number of donors we identify in intensive care units
and offer for donation, it seems to me that the biggest advantage
from the EU is sharing experience from other Member States who
seem to have got it right ahead of us. I would be lying if the
organ donation taskforce were not heavily, heavily influenced
by the work of Rafael Matesanz in Spain, the so-called "Spanish
model". I am not saying that we have taken the Spanish model
off the shelf and just put it into a UK context—not at all—but
we have been heavily influenced, not least because it shows what
is possible if you put your mind to it.
Q272 Chairman: In your evidence
you talked about the focus being local, because people tend to
think local. I have to declare an interest in asking you the next
question as the Patron of Little Hearts Matter, which is for children
with heart disease. We know that in renal transplant "local"
is easily local. For more complex transplants—we are getting
more people who are going to need heart transplants and, as I
understand it, cross-referencing is more difficult—is there
going to be more of a role for a wider pool through Europe?
Dr Murphy: I am no expert on sharing organs
across boundaries, although I understand there is little import
and export of organs between the United Kingdom and mainland Europe.
I am sure from time to time it happens. I think people respond
to local pleas. We all understand that if a child in Plymouth
requires a heart transplant, that heart could come from anywhere,
but people respond to local pleas in the press very warmly. If
there is a tragic case of a child in Plymouth then that will be
reflected in registration on the organ donor register. People
will say, "We've said yes because we know of the plight of
that poor child."
Q273 Chairman: You are saying
that in the present state of people's behaviour and their social
understanding of this they are likely to respond to something
they feel close to and therefore Europe and its use may be a little
way off.
Dr Murphy: I think so.
Chairman: That is helpful.
Q274 Baroness Gale: I have
an interest to declare, in that I am a patron of Kidney Wales
Foundation. My question to you is on the Organ Donation Taskforce,
of which you are a member Could you explain how the changes proposed
by the taskforce in their report that was published last month
might help to ameliorate some of the problems we have discussed
in response to previous questions?
Dr Murphy: The first thing I would say about
the taskforce report—and maybe we were not clear enough
about the philosophy behind it—is that it is about people.
It s about focusing not on what doctors want to do, not on what
nurses want to do, but recognising the right of a person to express
a wish to donate in the event of their death—and that is
what the Human Tissue Act is about, I think—and also recognising
that most people who go on to donate, at the time leading up to
their death are incompetent, and we have to therefore put in place
the mechanisms to make sure that inquiry over donation is made
in a systematic fashion. That is part of the Mental Capacity Act.
That authorises and I think requires doctors to make that inquiry
at the time of their patient's death. The first thing to say is
that it is about people, and I think that is a sea change in donation
in the UK. The second thing to say is that there is nothing radically
new in what we are recommending. All we are saying, I think, is
that, where there is best practice, we would like that to be standard
practice and we would like that to happen in every hospital and
all of the time. These are the ways in which we think existing
best practice can be delivered in every hospital and all of the
time. We think—and I have alluded to it already—the
hospital need to know what is happening, because, as I say, my
chief executive and my medical directors do not know. You might
be cynical and say, "They do not know because it is not part
of a target and it is only targets that they listen to".
There is some truth in that, I think, but it has to be somehow
performance managed. If it emerges that donors are being overlooked
on this, then the best way to effect change is for those senior
officers of the Trust to know about it, so we are recommending
that the whole process of donor identification has to be performance
managed. Some intensive care units do not see many donors. A&E
departments may miss donors. We recognise that there is a great
need to support the clinical staff in this process, so we recognise
the need for education and training, for identifying leaders,
champions, clinical champions who will take on this role in their
organisation and will be trained by us to do it. We also recognise
that there are some other obstacles. We have alluded to some ethical
legal problems that we must have resolved. There are issues from
time to time with other agencies. The coroner from time to time
will say no to a donation. The family have said yes, there is
a suitable donor likely to donate five, six, seven organs and
for some reason the coroner will say no or an investigating police
officer will say no. It is the inconsistency in that regard that
the clinical staff find so frustrating. The report, to me, is
all about performance managing best practice into standard practice.
It is nothing new.
Chairman: Dr Murphy, we are incredibly
grateful. We are sorry we are going to have to move on but time
is very short for us together. Thank you for helping us in this
way. If there is anything else you want to let us have, do let
us have it, but we have found your written evidence extremely
helpful too.
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