Agenda item 2 is our second oral evidence-taking session on the Transplantation (Authorisation of Removal of Organs etc) (Scotland) Bill. I welcome to the meeting Professor David Galloway, president elect, Royal College of Physicians and Surgeons of Glasgow; Dr Charles Wallis, intensive care consultant and organ donation representative of the Scottish Intensive Care Society; and Dr Calum MacKellar, director of research, Scottish Council on Human Bioethics.
I should make our witnesses aware of the fact that Anne McTaggart MSP, the member in charge of the bill, has joined us. I welcome her to the meeting and will give her an opportunity to ask questions at the end of the session.
As there are no opening statements, we will move to the first question, which is from Richard Lyle.
I note, Professor Galloway, that in the submission from the Royal College of Physicians and Surgeons of Glasgow, the response to the question whether you supported the bill was “Unsure”.
We came down heavily on the fence.
When you were asked
“Do you think the bill (if enacted) would achieve its aim of increasing the number of organs and tissue made available for transplantation in Scotland?”
your response, again, was “Unsure”. If the RCPSG is unsure about the bill, what does that convey to the general public?
Perhaps I can attempt to answer that question by explaining the mechanism behind our indecision. Initially, we put consultations to the council of the college, which is a reasonably large representative group of both physicians and surgeons, and we also pull in some expert opinion where that is necessary and relevant. To be honest, we had a mixed economy of views on each element of the questions that were put to us. Some were of the view that moving to a presumed consent or opt-out type of system, which is the thrust of the bill, would be desirable and have the intended effect. However, others were very uncertain about that and thought that if there were such a benefit it might be marginal or might even work in a counterintuitive way against the bill’s objective. For that reason, there was no strict consensus and hence our response as a college was, “We are not sure.”
May I ask your personal opinion about the bill and how you would have voted?
You certainly can ask me that on a personal basis. Perhaps, though, I should declare a potential conflict of interest. From about the late 1970s to the mid 1980s, I was very involved in the much earlier stages of developing the renal transplantation programme at the Western infirmary, and I have therefore had direct involvement in speaking to relatives and dealing with organ donation as part of an organ retrieval process. Furthermore, during a spell in neurosurgery, I was frequently dealing with patients who were diagnosed as brain dead, and the question of organ donation came up time and again.
No one, not even within our collegiate system, will disagree with my personal view that there is clearly a gap between supply and demand in relation to organ donation, and it would be wonderful if we could find a sure-fire way of closing it. We might never close it completely—I suspect that demand will always outstrip supply.
In any event, having looked at the evidence, I personally am unpersuaded that moving from the current situation, which is effectively a soft opt-in, to the soft opt-out enacted in the bill will produce any significant effect, and I think that any benefit is likely to be marginal. There are many more factors that are relevant to the supply of organ donors than simply the issue of making a legislative change with regard to presumed consent. It comes back to education, public awareness and a whole raft of things that I am sure that the committee is well aware of and for which there is now quite a bit of evidence.
Having read almost all the submissions that various groups have made to the committee, I note that a frequent reference point that comes up time and again is the work by Abadie and Gay, which is a 40-odd page document that dresses the whole thing up in mathematical jargon. The bottom line is that the authors are not persuaded that the change that would be produced by a bill such as this would have the desired effect on organ donation nationally. We should therefore stay where we are right now instead of adopting the change that the bill would make.
How would staying where we are increase organ donation?
There are various ways of tackling that, including public awareness, getting the message out in schools and so on. The trend in the past five or six years from 2009 shows that the rate of deceased organ donation in the UK has virtually doubled from around 12 per million to more than 20 per million. There is no doubt that there has been an increase, which has clearly occurred without any legislative change, and that there are lots of ways of enhancing that.
You are saying that the bill would not bring any gain, but that still presents us with the challenge of bridging the gap.
That is right.
So why has there been an increase? Is it because more people are available, or is it because we are taking organs from older people? Is it because of an education programme, a communications programme or a legislative drive? We are all as one in agreeing that organ donation and transplant programmes are good and that we would all like to increase the number of donations to give people a better quality of life. If we do not do that through this bill, how do we do it?
There are two points to address. First, we do not have a crisp answer to that question. The important issue is public awareness. The public seem to have a great deal of sympathy with the idea of acceding to the request for people to be organ donors, but the number of people who sign up for donor cards and make a positive decision to opt in is much more limited.
Secondly, I am slightly concerned that a change such as the one proposed in the bill might be counterproductive; indeed, two or three transplant surgeons have articulated the same concern. We can envisage a situation in which a family in the depths of a crisis is faced with a question that, for them, might come from left field and might be a source of uncertainty and disagreement for family members. When that kind of thing leaks out, it can lead to bad press. That is exactly why such a bill can be counterproductive.
I am sure that the committee is aware of other national examples. In Brazil, a legislative change to an opt-out was enacted and then repealed because it had the opposite effect to that which was intended. The issue is a complex one.
I am conscious that Dr MacKellar and Dr Wallis have not yet had the opportunity to speak. If you wish to respond to some of the earlier points, you may do so, and then I will bring in Malcolm Chisholm.
I agree fully with Professor Galloway.
The increase in the number of organ donations since 2008 followed the publication of a task force document by NHS Blood and Transplant that improved the systems and processes behind organ donation and also increased public information. That multi-pronged attack has led to the almost 50 per cent increase in donation, but there is still a shortfall of organs.
Yes. Compared with Spain, for instance, our figures are not great.
We need to consider the Spanish figures in context. Interestingly, Spain has almost no live donors. Clearly, living donation applies to some organs, but not to others; we have a very reasonable proportion of live donors for renal transplantation, whereas in Spain such donors are virtually non-existent. That is just a comparison.
11:15
You are correct to say that Spain does not have many live donors, but overall it has significantly higher donations—
From deceased donors.
—and a smaller opt-in of people signing up for donor cards. Are there some lessons for us in that?
It is interesting. One lesson that might be pertinent to this discussion is that, to my understanding, the Spanish legislation has not changed during the process.
We know from speaking to practitioners that it is part of the process. Malcolm?
I think that everyone accepts that, as has been said, there is no panacea and a range of measures are necessary. Whether people support or oppose the bill, I think that everyone accepts that.
I suppose that there are two issues that I would like to start by highlighting. In a sense, the first one—the gap between supply and demand—has already been highlighted. That is what drives people to think about the range of measures we should adopt. However, the even more striking gap is the one between the 40 per cent of the population who are on the register and the 90 per cent who say that they support organ donation. I feel that the proposals in the bill, to some extent, have that gap as their starting point.
Having read your evidence, all of which is useful, it seems to me that there are moral objections in Dr MacKellar’s submission but more pragmatic objections from the two clinical people who are here. Let us deal first with the moral objections from the Scottish Council on Human Bioethics. Is it your position that the only thing that matters is whether an individual has said that they want their organs to be used? Do you feel that relatives should never give consent if the person has not already opted in to the register that exists at present?
I think that there are three cases. The first is where the person has made known their wish to opt in or out of the register. The second is where the relatives know the wishes of the deceased but the deceased has not registered either in or out. That, again, would be acceptable: when it is clear that the relatives know the wishes, they can say either no or yes to organ donation.
The problem is created when the relatives have no idea and no information about the wishes of the deceased. When that happens, it is a difficult decision for the relatives. It is just guesswork, and we believe that organ donation should not take place in that situation. The fact that it is taking place in Scotland shows that, at present, we have a soft opt-out situation.
There is an awful lot of confusion in all the documents that I have read over the years. In 2005 and 2006, I was involved on behalf of the Scottish Council on Human Bioethics in the Human Tissue (Scotland) Act 2006. Section 7 of that act, which is in force, enables the soft opt-out system to operate when deceased persons have not made any wishes known. As the Scottish Parliament information centre report says, there is an assumption that organs and tissue are available for transplant if the deceased has left no instructions about what to do with them. I do not really understand why we are having this debate when the soft opt-out situation already exists in Scotland.
I asked the question because in your submission you said that the SCHB is
“very concerned that over the five year period 2008-2013, in Scotland, 62% of donations have come from donors who were not on the register at the time of their death.”
I suppose that my concern is that your proposal would dramatically reduce an already inadequate number of organs, if you object to 62 per cent—
Amongst that 62 per cent of people, there will be quite a number of people who had told their relatives what they wished in a discussion over a meal or whatever, so the relatives would know that.
I understand that.
A proportion of that 62 per cent would have relatives who had no idea, and their organs would have been taken even though no one knows whether that would have been what they wished. Many people are disengaged in our society and do not know what the present system is. That has to be taken into account.
The reality is that, under both the current and the proposed systems, relatives will be consulted. That is why I took particular exception to your reference to the scandal at Alder Hey, where parents were not consulted.
The Scottish Intensive Care Society has said, in a much softer way, that the proposal would
“Lead to loss of goodwill and confidence in organ donation from the public”.
Again, if the relatives are still to be consulted, that loss would not happen because the relatives would still have the final say.
What the proposal will do is to change the nature of the conversation between the specialist nurses or clinicians and the relatives. In the vast majority of cases, the relatives will still have the final say—or, in a minority of those cases, a proxy will have that say, which is an issue that we may want to consider later.
How could that approach lead, in the extreme case, to an Alder Hey, or even to the more moderate concern of a loss of goodwill and confidence?
The flowchart on page 16 of the policy memorandum states that the clinician must
“Ask the nearest relative whether they are aware of any objection expressed by the person.”
If all the preconditions are met, it says to go ahead with donation.
It is difficult to see how the proposals would change the current situation, in which we already ask the relatives. The bill says that we will do the same thing. How will that improve organ donation rates? That is our concern.
The conversation would be changed—but the more you say that the proposed system is similar to the present one, the less effective are what I would regard as the exaggerated objections to it.
I accept that your critique is not nearly as extreme as that of the Scottish Council on Human Bioethics, but you are still raising very serious concerns at the same time as saying that, in practice, the proposed system might not be very different from the present one.
Most of my concerns are about the practicalities because, as clinicians in intensive care, my colleagues and I are the people who approach families in that very difficult situation. We are almost always the first people to raise the question of organ donation, with or without the specialist nurse for organ donation present. We know what it is like. In my nearly 20-year career, I have seen lots of very distressed families going through the process, and it is very difficult for them. I would not want to be in a situation in which I am forcing a family to accept organ donation because the person has not opted out.
We are all very respectful of your experience. The scenario you have outlined is not the intention of the conversation. However, your point goes to the heart of the bill, and we will reflect very seriously on what you have said.
Although it attracted headlines in Sunday’s newspapers, the Alder Hey analogy did not seem to be appropriate, given what is proposed in the bill.
I agree that the Sunday headlines were inappropriate. We mentioned Alder Hey because we mentioned it in 2005 and 2006 in relation to the Human Tissue (Scotland) Act 2006, which was trying to address the issues related to it. There is an ethical principle that, when someone does not say anything, that is not consent. That is why in our report we did not talk about presumed consent but about an opt-in or an opt-out system. That was the problem in Alder Hey: nothing was said, and it was presumed that the staff could go ahead and use the organs from the dead children for research.
Another problem is that, for an opt-out system to be ethical, everybody in the country should know about it. I would be surprised if a great majority of the people in countries in Europe that have an opt-out system know that they have such a system and that there is a possibility that if they said nothing their organs would be removed.
In the soft opt-out countries, the relative will always be asked what they think—but first the deceased person has to have relatives. It is always assumed that we have a family, with brothers and sisters who are close to us, but a lot of people do not have that. I have nobody in the whole of Scotland who would be considered a relative; I just have friends of long standing, who I have probably never talked to about organ donation. That is the first problem: who are the relatives? We have heard that in Scotland even someone’s landlord has given authorisation for the removal of organs for transplantation.
Before we go down the opt-out route, it would be useful to know how many people are aware of such systems in countries where they already operate and how much relatives, who could just be friends of long standing, know about the wishes of the person who might wish to donate their organs. That is quite easy research to do, and we believe that it should be done before we consider going down that route.
Mike MacKenzie wants to ask about the ethics, but we need to come back to the two extremes—one is that we already have a soft opt-out system in practice and the other is that, if we introduce it, there will be all sorts of consequences. We are getting confused with the evidence about the serious consequences of enacting this bill. I will bring in Mike MacKenzie to ask his supplementary question, after which Rhoda Grant can come in.
I would like Dr MacKellar to confirm whether I am right in my understanding of the position set out in his written evidence. It is inevitable that, if the bill were to pass, a substantial proportion of people would be ignorant of it. Some of them might be quite happy with presumed consent, but a proportion of them would be unhappy with it. Your position is that that would create a situation that is unethical, which I understand.
My problem with that position is that with regard to the rest of our law—certainly our criminal law—ignorance of the law is no excuse. If I committed a crime and said in court, “I’m sorry, your honour, but I just didn’t know about that law”, that would not be an excuse. It seems to me that your argument runs the risk of ethically undermining our whole body of law, and it is invalidated as a result. What are your comments on that?
The whole aim of ethics is to make any legislation scandal proof. There was a scandal at Alder Hey, which we have talked about already. I am sorry to come back to that, but the problem was that something was done without asking people what they wanted.
Nobody in this room would want a scandal to arise with either the current legislation or future legislation. That is why it is extremely important to make sure that what is done to a deceased person’s body is in accordance with his or her wishes. If that does not happen and relatives find out that it did not happen, or a journalist carries out an investigation and finds out that a lot of organs have been taken from people who had no relatives or friends, that would undermine confidence in the system.
On the bill, we want the general public to have really strong confidence in the system, so that there is no possibility of things happening that should never happen, which would result in a scandal.
With the greatest of respect, you have merely reiterated your position as I understood it. The question that I hoped you would address is whether those same principles would apply to the rest of our law. Do you not agree that it is important that the public have confidence in our criminal justice system?
I am struggling to see how you can apply ethics and turn them on and off as it suits, in a pragmatic fashion. That also relates to the six months’ residency part of the bill. It is important that we consider ethics in their wider context and not just pick and choose to apply them willy-nilly. Why should ethical consideration be applied to this bill and not to other bills?
11:30
In a way, ethics are more important than law. Laws are based on ethics; they are not just drafted out of thin air. Ethics are more of a foundation than law.
We are not talking about crime in the financial sector or whatever; we are talking about something that involves everybody in the whole of Scotland. It is extremely important that everybody in Scotland knows the system, because it is really important for them. They might not be interested in some financial bill, but they will be interested in this bill.
The Alder Hey issue was about organs for research, whereas the bill is about organs for donation. It is a bit like comparing the gift of life to medical research. Both things are laudable, but they are poles apart. The comparison does not really work.
I will turn your arguments on their heads. We know that almost half the people who are on the donor register will have their wishes rejected by their family at the point of death. That is an ethical issue as well, and the bill seeks to do something about that. I have belt and braces: I am on the register, I carry an old donor card, and I told my husband about my wishes—I have done almost everything that I can. However, if my husband was not there when I died and another member of my family was there, they could reject my wishes. Where are the rights of the person? We are losing half the available organs at the moment because people’s rights are not being taken into account.
It is a bit like writing a will before you die. Normally, a person’s wishes should be respected, but, as we have been saying, it will be very difficult to respect a person’s wishes if the family opposes them. You cannot wheel out a person in front of a relative to remove their useful organs when the family is so distressed. Normally, however, the last wishes of a deceased person should be respected.
It seems there is a bit of difference between members of this panel regarding their understanding of the current situation. Dr MacKellar referred to it as a soft opt-out system; I would think of it as a soft opt-in system.
Whichever way we look at the issue, it seems that, since we will involve the family in making the decision, there is not a huge difference between the two options. The question seems to turn on this point: would changing the legislative framework to one of presumed consent make such a difference to the conversation that would be had with the family, which Malcolm Chisholm talked about? Would that change the nature of the conversation such that we would enhance the number of organ donations? That seems like an enticing prospect, but I do not know the answer to the question.
Dr Wallis, you mentioned your practice and your involvement in the area. If you change the question and change the people who ask it of a distressed family, will that make a difference? Will that increase organ donation?
I suspect that it probably will not. The reasons that people cite for not wanting to go ahead with organ donation are commonly things such as the time factor, which I alluded to in my written submission. Currently a donation takes about 21 hours after cardiac death and nearly 30-plus hours after brain death. That length of time is unacceptable to many families and is often cited as the reason for not wanting to go ahead. It is not necessarily that they disagree with organ donation in principle. I do not think that changing the law or changing the conversation will change how families perceive that problem.
What question do you ask of the families at this point?
The first and most important thing is to explain to the family that their loved one is either brain dead or about to die, and that conversation has to be quite separate from the discussion about organ donation. Once the family have accepted the inevitability of death or impending death, you can then move on to a separate conversation about organ donation. You can introduce the subject in a variety of ways, depending on the family. If you know that the person is on the organ donor register, you can open that conversation by saying, “We know that John is on the organ donor register and we’d like to talk about organ donation.”
Does that mean that the clinician who has been working to save or extend the life of that person in the intensive care unit, and who comes to the conclusion that the person is brain dead and has that discussion with the family, is the same person who begins the discussion about organ donation, or is that handed over to a different person?
Quite often it is the same person, but increasingly we involve the specialist nurse for organ donation. NHSBT likes the specialist nurse for organ donation to be involved at that initial approach.
There is a complete division in Spain. The clinicians who are working to save the person’s life do not in any way begin the discussion about organ donation. It is a completely separate process and there are established clinicians and doctors in each of the major ICUs to take on that discussion; they become involved only when it is accepted that the person is brain dead. That is the situation as I understand it. Would it be the same here?
Is there a clinical process to establish whether somebody is brain dead?
Yes.
Yes.
Is that well respected and recognised?
Yes, internationally.
So there is an international standard. Maybe it is just a question of changing some of the systems that we have.
I would like to comment on that, if I may. One of the strengths of the ICU team approaching the family is that the family already know them and have respect for them, because they have seen that team working hard to save their relative. I think that it would be quite difficult to bring in a new person whom the family have never met before.
It works to great effect in Spain. Going back to Dr MacKellar’s idea, if somebody who is fighting to save a person’s life starts to talk about organ donation, I would have thought that it raises a contradictory point about trust. People would say, in that situation about organ donation—
With respect, convener, there is no contradiction at all. In practical reality, you get to a point where a decision has already been made and it is clear, on internationally accepted guidelines, that the patient is brain dead, and that is the end of the story. It is only then that there would be any discussion or that the subject would even be broached about the possibility of the individual becoming an organ donor.
Further to what Dr Wallis said, and we appreciate his knowledge and experience of the subject, irrespective of whether we change the system, the length of time—whether it is 21 hours or 32 hours—being a negative thing for a lot of families is an issue that has been raised. We picked that up when we spoke recently to families who had a relative who donated. The specific point that they made was that they had been asked a vast number of medical questions and wondered whether some of that information could have been found out from the medical notes. That is one aspect of it, but is there any way in which the length of time could be reduced in terms of the involvement of the families? You seem to be highlighting that as a major obstacle to donation for a lot of people.
It is really a logistical problem. The initial conversation with the family about organ donation typically takes about an hour. If I introduced the subject to the family and they gave an initial positive response to organ donation, we would bring in a specialist nurse for organ donation—if he or she was not already there—and the authorisation process would then take about an hour. That is not actually very long. What takes a long time is all the other logistical things, such as tissue typing, blood typing and virology checks—to ensure that the patient does not have hepatitis, HIV or other viruses—and then we have to find a potential matching recipient. Only then, when we have the okay to proceed, do we call the surgical team, who come and retrieve the organs. There has to be time for that team to be mobilised and time to find a slot in the operating theatre, as well as the time that the procedure itself takes.
But most of that does not involve the family.
That is right.
So why is the time that it takes a negative for the family? I know that one hour is bad at such a moment, but are you saying that that is all the time it takes to ask all the questions?
Oddly enough, it is less of a problem in brain death cases, because in those cases you have already told the family that their loved one is dead—brain dead—and they have accepted that point. The difficulty is with donations after cardiac death, which account for about a third of our donors. In those cases, the person is not dead until right up to the point of donation—we keep them hanging on, and the families find that difficult. Often, they have been through days, if not weeks, of a very distressing illness when they come to that point, so they are utterly exhausted.
I again hark back to what happens in Spain. The big difference is that in Spain they spend a lot of their time not on cardiac death but on brain death, and they get big results. The specialist comes in to take over the burden from the clinician. They establish whether the person is a viable donor or whether there is any infection, cancer and so on, and they deal with the legal issues. There are also specially trained doctors and nurses who support the family. The results indicate that the approach in Spain is effective. When we were in Spain, we were told that the family refusal rate among expats—Brits in Spain—was 10 per cent, in comparison with the 40 per cent rate in the UK. There seems to be a gain as a result of the practice in Spain.
I accept that. It is difficult to understand exactly why the difference exists, and we do not know whether it is a result of the changes of the sort that the bill would introduce.
We spoke to the practitioners—the transplant doctors—in one of the biggest hospitals in Madrid, who said that they felt that the legal framework allowed them to ask whether there was any objection, and the conversation started at that point. They do not cross that line. They described situations similar to those described by Dr Wallis, when there are differences within families—between brothers and sisters, or whatever. Spain has highly trained clinicians whose job is to do that on a daily basis—whereas we have the SNOD nurses, Spain has clinicians.
In this country, the role that you describe is done by the SNODs—nurses who are paid for by NHSBT. They work in teams across the UK and are highly experienced in all the things to which you refer. They pretty much do the job done by the Spanish team that you describe.
We all know about the hierarchy in our hospitals. Unfortunately, clinicians sometimes have more clout than nurses. By how much have the nurses increased organ donation?
They are absolutely pivotal. Without them, the system—
What has been the outcome of the introduction of the specialist nurses? What increase has there been in organ donation since specialist nurses were introduced?
I could not possibly say. Back in the 1980s, there were people called transplant co-ordinators. As time went on, their role evolved, and the name was changed to SNOD about 10 years ago or so. There has been an evolutionary process, during which organ donation has increased. There is no one point about which you can say, “We introduced this person and look at the effect.” That is an impossible question to answer.
In Spain they can point to such a moment. They can point to a significant increase in organ donations when specialist people were introduced in their hospitals, but we cannot do that.
There are so many confounding variables that the question is impossible for us to answer.
11:45
Good morning. The Scottish Intensive Care Society’s submission says that the situation is already very complex. It also suggests that the bill would not increase organ donation. It is difficult for me to understand why the society would state that.
I return to the issue of complexity. Is there a way to make the conversation with families easier? For example, by running sufficient tests beforehand, some of the questions that are asked by the specialist nurse may not need to be asked. You have the patient in and you know their blood type and whether they are suffering from any virus. You do not need to do all the significant checks or ask extremely personal questions on issues such as drug use, HIV and sexual activity. How many families walk away from the specialist nurse at that point because the questions that they are being asked are too hurtful or concern matters that are too sensitive?
I am not aware of any families walking away at that point. The questions do not come until a little later on. You start off with the initial approach about organ donation and you get a clear steer pretty quickly as to what the family’s views are. If you get a provisional positive, if you like, you get into those much more detailed questions. The families are warned by the specialist nurses that the process will involve some questions of the nature that you describe.
We have to ask those questions because we cannot rely on blood tests alone. For example, when someone catches HIV, it takes a while before they develop the antibody that comes up in a blood test. Let us think of the hypothetical situation in which we have a 40-year-old man who is dying in an intensive care unit. We need to know a little bit about what he has been up to. That might include recent travel. If it turns out that he has recently been on a trip to the Philippines for uncertain purposes, he may have caught HIV out there and it may not yet show up in the blood test. We need to know these things; if we did not and took those questions out, we would increase the risk to the recipient of catching something. You may have heard about a case in Wales where two recipients died of an extremely rare worm infection that got into their brains. The infection came from the donor. While the centre had screened the donor thoroughly, it had not picked up that the donor had a down-and-out lifestyle and was an alcoholic. Nobody knew him very well—that was a real problem. He had died of that infection but it was not diagnosed at death and the infection killed two recipients. That is quite unacceptable.
But the bill would not alter that scenario, would it?
Let us say that that patient had not opted out—which he probably would not have done because he was disengaged from mainstream society—the bill would make it more likely that we would take presumed consent. As it happened, within the current system, the donation still went ahead. I should point out, however, that all other centres in the UK had declined those organs. I am giving you publicly available information, by the way.
Rather than the opt out proposed by the bill, is your preference to retain the opt in, but to make the public more aware of it? I am trying to understand why you feel that the bill would result in no significant increase in organ donation.
Are you asking me as a representative of our society or as a doctor?
Both.
The answer for the society is very similar to that from Professor Galloway. Initially, when we spoke about the issue, we were split roughly 50:50. We had further discussions more recently, when some more of the bill’s detail came out. Most of the discussion was on concerns about the practicalities of the proposals, such as those on the authorised investigating person, which we have not discussed yet, and the proxy. Those two things, which I think came up in many other submissions, were major causes of concern.
As an individual, I am happy with the current system and am not sure that the bill would necessarily increase the number of organ donors. However, I am just one person, and I do not want to influence things.
But your submission states that it would not do so.
My submission is essentially based on our concerns about the practicalities and their effect. The most important thing to say is that the Scottish Intensive Care Society is extremely supportive of organ donation and always has been. We will continue to be extremely supportive of it.
Does either of the other witnesses have an opinion on whether we should try to raise awareness of the opt-in system, as opposed to what is proposed in the bill? Do they favour something like that?
Raising awareness is almost a guaranteed way to increase organ donation. We could argue that a range of opportunities have not been fully exploited. It would be possible just to increase the role of education, even in schools, to get the importance of organ donation into the public mindset at an early stage. Ultimately, that would be likely to have a very beneficial effect on organ donation in adult life.
Although I cannot prove any of that, there is certainly plenty of evidence in North America and even in the Arab world, where there are religious issues that apply, of course. People have looked at a whole range of issues that relate to education, religion and public awareness—they have even linked it to driving tests, for example. All those opportunities have been considered to be extremely beneficial.
It is important that we maximise those easy wins in Scotland. Despite having heard the discussion around the table, I am still not convinced that making an adjustment such as that which the bill would make would achieve the hoped-for benefit. It would be nice, but I am not convinced.
I agree. I used to be responsible for organ transplantation at the Council of Europe in Strasbourg. We used to go to Spain and Russia, for example, to try to understand what was happening in those places. Even 12 years ago, Spain was the best country in the world for transplantations. People there said that they worked with all sorts of different sections of society, including the churches. They tried to encourage priests to preach about organ transplantation in Sunday services, for example, and to remind people that the Catholic Church is very supportive of organ transplantations.
I welcome the meeting that the committee had with all the faith groups. I know that faith groups have programmes in place to try to encourage people such as ministers in the Church of Scotland to talk and preach about transplantations and to make people aware that their faith is in favour of transplantations.
I see only two differences when I look at the bill and at what is happening right now. Those differences relate to the provision of proxies and the development of authorised investigating persons. Otherwise, I do not really see what the bill, with its soft opt-out system, will achieve that is not already in place. I do not see the advantage of the bill.
Does the bill not give us two options, in a sense? People can still opt in if there is a register, and they can have an opt out as well. Given that, through the bill, there will be heightened awareness through education, which could obviously refer to an opt in, there is the possibility of having a double option that is not currently present.
I take the point about the complexities of introducing AIPs and so on. I think that that would exacerbate situations that are already fairly complex and difficult for families.
I believe that we already have both an opt-in system and an opt-out system in Scotland. As I said even in 2005 and 2006, I believe that we have a sort of hybrid system. What we have right now in Scotland is the best system available to provide the maximum number of organs without going down the route of having hard systems, such as a hard opt-out system. The system that we have at present, with both an opt in and an opt out, will provide the maximum number of organs.
Does the rest of the panel agree that we are maximising the number of organs that are available in Scotland?
I do not agree that we are maximising the number. I would hesitate to say that the bill would allow us to maximise the number. Public awareness and education are the key to maximising the number. We have a soft situation now, and we need to change the background default legislative framework, without necessarily changing dramatically the practical realities of the conversations that are had with families, although attitudes might be changed to some degree. That is the level at which the bill would make a difference.
We have referred to the situation in Spain. It is true that there is national pride in Spain that it has the highest number of organs available in the world. From that flow a number of attitudes and cultural change. However, the question remains whether we are happy with the situation here. Are we happy that all potential organ donors are being identified in the first place? If not, how do we increase the number of potential donors who are identified?
I am happy that we are identifying the vast majority of potential donors. Some are missed, but NHSBT looks at that closely. We have a process called the potential donor audit under which every death in intensive care is looked at to see whether the person could have been a potential organ donor; if they were not, that is fed back to the teams in the unit as a learning process.
I am aware of the importance of the ICU in all this, but we have had information that shows that levels of organ donation are higher in some areas—perhaps it is bigger hospitals against smaller hospitals and so on. What is the gap between doing all that we can to identify those who could donate organs and doing the nearly all that you have described?
Even if we did absolutely everything that we could, there would still be huge differences between hospitals, because the figures depend on the case mix and the type of patient that comes into the hospital. For example, I work in the Western general, which has a specialist neurological and neurosurgery unit, so we get all the patients from south-east Scotland with major, traumatic brain injuries or bleeds into the brain from which they can die. They all come to the Western general, so we have a very high rate of organ donation. However, another hospital—such as the Royal infirmary, which is just up the road from here—will have a much lower rate of donation because it does not have that type of patient. It all depends on the case mix, and we cannot compare organ donation rates from hospitals unless they have the same case mix.
So we cannot compare donation rates in different regions or in similar hospitals in, say, Grampian, Aberdeen and Glasgow. Are they all doing equally well?
I would not say that, because there are differences. However, we look at the issue all the time and are doing our best to optimise donation rates.
Why are there disparities, then? What has your research found to explain the disparities between similar hospitals with similar case loads?
That might be partly down to how units work and—dare I say it—to the attitudes of clinicians, which can have an effect. Some clinicians are very pro organ donation—I am—but others are less so. That can have an effect. As time has gone on, organ donation rates have improved, as we have discussed. All places are steadily coming on board.
If we start from a lowish rate, there is an improvement. We then start to look at comparisons and how we can do better.
You just said that the prospect of identifying a donor can depend on whether a senior clinician supports the programme. If that is one of the reasons, it is quite shocking.
12:00
That is just one of many factors. We also have to ask the question of the family.
I have never come across senior clinicians who are against organ donation. I do not have any research that can answer the question of why hospitals that have a similar case mix but are in different parts of the country might have different organ donation rates. We have not looked into that.
Dr Wallis alluded to regular studies of the outcomes.
I did. The potential donor audit is continuous and we look at it all the time. The information is constantly being fed back to clinicians.
There is evidence, Professor Galloway.
All that I am saying is that I am not aware of it.
You are not aware of it.
I have a couple of brief questions, the first of which is for Professor Galloway. I take your point that we can do lots of things short of legislation to increase awareness and the donation rate. I dare say that you would welcome the bill because of the increased media coverage, which would also serve to raise awareness.
Despite our best efforts, no legislation is perfect. Surely you are not saying that the current legislation is perfect. I am interested to hear your thoughts on how we could improve it.
That is an interesting question. Is the current legislation perfect? No, it is clearly not. It would be great if we had a system whereby we could genuinely maximise donations and everyone was onside, not just the enthusiastic people who are around this table and those who have proposed the bill to narrow the gap between supply and demand and so on. However, there is a range of variables that are open to attack. Short of legislation, those ought to be exploited.
I take your point about the publicity that surrounds such a bill. Of course, publicity can work both ways, and it depends on how elements of the media might represent your best intentions.
The current system is good. My personal view is that the changes that the bill would enact would have a marginal effect. It would be difficult to measure and define that effect in the fullness of time, because those measurements would be made in a fluid and dynamic situation in which there are all sorts of other factors that are as likely to have as significant an effect as making the adjustment for presumed consent is, for want of a better phrase.
I have one more question, convener, which is for Dr MacKellar on ethical considerations. I accept your argument that there will be a proportion of people whose views we cannot know. It would be unethical to introduce compulsion, because some of those people will have a disinclination to offer the gift of life. I understand that such a consideration is on one side of the ethical scales. How do you balance that with the other side—that the gift of life can be given through organ donation, perhaps to two or more people?
You cannot. In a way, that is what Parliament does. It measures the risks against the advantages of any procedure. That is what ethics is all about. On the one side are the disadvantages that everybody recognises and on the other, we have the advantages—in this case, that is the saving of life. In a way, it sounds wrong that, because some persons have decided not to say anything through registration or by talking to their relatives, their organs cannot be taken to save two or three lives. That sounds wrong.
It certainly does, if you do not mind me saying so.
It does. I recognise exactly where you are coming from. My job is always to try to find out how other people think and what their arguments are.
However, there is a very strong principle that is enshrined in European law that means that strong wishes about a person’s body should be respected, be they alive or dead. The body of a person is extremely important. The house or the car of a person may be less important, but the body of a person is extremely important.
That is why a person cannot own their body. There is no law in England, Scotland or anywhere else that says that a body belongs to somebody. People have responsibilities for their body. We are our bodies, but we do not own our bodies. If we did, we could sell our bodies—we could even sell our organs. The ethical principle that we do not own our bodies says that we cannot do that. Bodies are extremely important, and what happens to a body is extremely important because it belongs to the person. In a way, the person is the centre of ethics—it is because we have persons that we have ethics and the idea of respecting the wishes of the person.
If we want to save lives, we can do so in all sorts of ways that are completely unethical. Just because something can save a life, it does not automatically become ethical.
I will move on to the proxy and the authorised investigating person. It seems to me that those two aspects of the bill are what the Scottish Intensive Care Society and the Royal College of Physicians and Surgeons of Glasgow are concerned about. As I understand it, you had a split decision on the bill until you looked at those two aspects. What are your concerns about them?
It was not clear from our reading of the bill who the authorised investigating person would be or what kind of background and training they would have. We already have the SNOD—the specialist nurse for organ donation—who deals with all the aspects that I spoke about earlier. Is it proposed that we have an additional person? If so, who would they be? They would have to be available 24/7. Those were our concerns. We were worried that the proposal might complicate and prolong the process.
If the SNOD was the authorised investigating person, would that allay those concerns?
Initially, I thought that the roles would rest with the same person, but the Scottish donation and transplant group suggested that that might not be the case, although I am not sure where it got that idea from. If the authorised investigating person and the SNOD were the same person, that would probably be better, so why bother with the proposed provision?
Some of the same concerns were voiced in the college. In relation to the proxy, we were a little unsure about the tensions that might exist if the proxy were not the nearest relative and there was a conflict between the family’s view and the proxy’s view, and about how the proxy would know in any event. The definition of that seemed a little vague to us, so we were hesitant about the proxy’s position.
We would have concerns if the specialist nurse for organ donation was the same person as the authorised investigating person. There could be a conflict of interest. At the moment, the SNOD does not authorise organ removal for transplantation; it is the nearest relative who does so. The SNOD is there to ask the nearest relative whether the transplant can go ahead.
If the bill were to go ahead and the specialist nurse for organ donation was the authorised investigating person, it would be the authorised investigating person who, in some cases, authorised the removal of organs for transplantation. If they were the same person as the person who was trying to encourage transplantation, there would be a conflict of interest.
If there was no proxy—if no relative was contactable—the authorised investigating person would authorise the removal of organs for transplantation. That would involve going down the road of a hard opt-out system, whereby the relatives would not be asked. That is another concern that we have about the proposal.
Would the role address the point that clinical enthusiasm for organ donation varies? Would the authorised investigating person help with the situation where there are clinicians who are more enthusiastic about organ donation and those who are less enthusiastic about it?
I do not know how to answer that question. I do not know on what data or evidence we would base any answer.
My question is based on the evidence that we heard from Dr Wallis earlier. That might be one of the factors in the variance in organ donation rates between one area and another.
Are you asking whether—
I am asking whether the authorised investigating person would help.
In changing clinicians’ attitudes?
If that person was there and there was an expectation.
It seems that the authorised investigating person would be there simply to fulfil a legislative process and establish various facts, and not to influence clinicians’ attitudes about whether transplantation is desirable.
The person would be there to ensure that the bill was—
I guess that, if the bill was passed and there was a soft opt-out scenario, that person would probably push gently in that direction, in making sure that the law was followed. In that sense, I suppose that the role might have a positive effect.
My understanding is that the proxy is required where there is no next of kin or where the next of kin might not share the views of the person who is on the register. What happens at present when you cannot find a next of kin? I heard someone say that a landlord had been asked for permission. I would sooner have the authorised investigating person than a landlord making a decision about what happened to my body after my death. What happens now?
Are you asking whether a clinical team would ever proceed with a donation if the person was on the donor register and the family were throwing up their hands in horror? From my experience, the answer would be no. The family would carry the day.
That was not my question. My question was about what happens when there is no next of kin or loved ones but the person is on the donor register. Someone said that, in one instance, a person’s landlord gave permission.
If the person is on a donor register, it is clear. We would go ahead because the person had expressed that wish. The difficulty arises if they are not on the register. We would then try our best to find someone who knew the person enough to be able to say whether they would have wanted to be an organ donor.
One reason for having a proxy is that there is no next of kin. I think that it was the Scottish Youth Parliament that mentioned looked-after children and said that people who do not have next of kin would very much want a proxy. You are saying that, if they are on the register, they do not need a proxy because their views and their having signed up to the register would be sufficient to allow them to donate.
I am just telling you what we do at present. I thought that the intention was that everybody would have the option of appointing a proxy and that most people would have one. Is that right?
No. My understanding is that, if someone does not have any next of kin, they can have a proxy, and if they think that their next of kin will not agree to the donation and they very much want to donate, maybe for religious reasons, they can have a proxy who will fight their corner at that stage and say what their wishes were. My understanding is that people will have a proxy only in the rare circumstances where they think that there will be conflict or they do not have any next of kin to say what their wishes were.
Our concern is that there will be the family and also a proxy.
The concerns that have just been raised are the concerns that we had in 2005 and 2006. In those days, people could not register their opposition to organ donation. That option has been available only since July this year. Again and again, we tried to raise the matter in the Parliament, saying, “What happens if someone does not trust their relative or does not have any relatives?”
In those days, the only way for someone to record their decision was to ask for it to be put in their GP notes, which were written on paper, so it would have been a big problem for people to know exactly what the person who wanted to donate their organs had done to state that. Since July 2015, however, it has been possible for a person to register their position.
You would also have to register that a person had decided to have a proxy. As we just heard, once organs become available and there is a green light for organ removal, there is not much time. Whoever was responsible for taking the organs for transplantation would have to know straight away that there was a proxy, so the proxy would have to be registered somewhere. The question is whether there would be any advantage in having a proxy system when someone can already register directly in the register that has existed since July 2015.
12:15
Richard Lyle will ask our last question.
There are concerns that two sections of our community may not have their wishes dealt with correctly: vulnerable groups and adults with incapacity. In your opinion, how would vulnerable groups and those with limited capacity be treated under the bill if they failed to opt out or were unable make their views known? How would the bill support vulnerable people and those with limited capacity to express their views? What would happen if adults with incapacity had difficulty in opting out of organ donation? We must respect people’s views, and people in faith groups may have concerns about how their views would be met. In your opinion, what is the situation regarding vulnerable groups and adults with incapacity?
Personally, I would not have a problem with their donating organs after death. Some time ago, there was a lot of discussion about whether children and persons with severe mental disorders could participate in biomedical research. Some drugs or treatments can be tested only on children or people with severe mental disorders because the drugs that are being tested are for those people, so they should be able to participate in that biomedical research. The situation that you describe is exactly the same.
People with severe mental disabilities should be able to donate their organs after their death, because they should be considered as persons like you and me. They have a right to donate their organs after their death and that right should be respected. However, if they were unable to make a decision, their welfare attorney or guardian would have to make the decision as best they could. That is the only situation in which somebody else should be able to make a decision on behalf of a possible donor when they have no information about the person’s wishes.
Those people have a right to help others in the same way as anybody else; therefore, they should have a right to donate their organs after their death. Nevertheless, I would be opposed to their being living donors. In 2005-06, we brought in the rule that a person with mental incapacity or a child should never be a living organ donor.
I think that, after death, if a person has no supporting relatives, proxies or whatever, in as much as you have any note of the level of understanding of the individual, that should be respected; otherwise, one would be comfortable with a presumed consent scenario.
I thank the panel and all my colleagues around the table for their evidence this morning. Some of it was sore in my ears and in my heart, but I have got to where I am.
I want to clarify, from the outset, that I have not introduced the bill as a silver bullet. Ultimately, all of us round the table agree that we need to increase organ donation rates. As we sit here, 571 people in Scotland are awaiting organ transplants. I do not need to tell the panel that, because they will probably know it. It was mentioned earlier that the organ donation rate is increasing but, in this year’s figures, we are looking at a 10 per cent decrease—we are sitting at a 7.5 per cent decrease and that will go to 10 per cent if the figures continue as they have been going.
Ultimately, we all want an increase in organ donation. That is why the bill has been introduced and why the convener and some members have been to look at international evidence. We know that the Welsh system will start on 1 December. Why should we be any different? Why should people awaiting organ transplants in Scotland be any different from those anywhere else in the UK? There are a lot of queries and decisions to be made about the proxies, but that proposal would actually just bring us in line with the current system in the rest of the UK—only Scotland is not doing that.
Sorry, convener—I will get to a question. Dr MacKellar from the Scottish Council on Human Bioethics mentioned that the changes are insufficient and may be open to challenge under the European convention on human rights. What article would that be under?
It would be article 8, if I remember rightly, on respect for private life and choices.
Would the same article not cover someone’s choice about what they want to happen to their organs when they die?
That is right, but the problem arises when the person has said nothing and we do not know what their real wishes are, and then something happens that is against their real wishes.
As the panel will be aware, more than 80 per cent of us agree that organ donation is a good thing and would do it. However, only up to 40 per cent have got around to registering. How do we target that other 40 per cent?
I agree entirely. There is a difference in ethics between intentions and decisions. People can have the intention to do something good and never do it. That is the problem right now with organ donation. We have to do as much as we can to try to bring that 40 per cent figure down. I agree with all the things that have been said about trying to increase donation.
To come back to something that I said earlier and that I should perhaps have qualified more, the present legal system is the one that will enable us to maximise the number of organs. Of course, it is not just the legal system that will do that—we will also need all the programmes that have been discussed. However, as Professor Galloway said, I do not believe that we will ever have enough organs. There will always be problems.
So that is okay then, and we should just rest on our laurels.
No—I am not saying that. I just put that out there as a comment.
What is ethical, then? We have a toolbox and we have used most of the tools in it, but more than 500 people are still waiting for transplants. We have tried those tools, and they are not working.
The tools include the soft opt-out system that is suggested in the bill. We already have that system. I have been saying that again and again for the past 10 years.
It is not working.
Why bring in new legislation? The only thing that I can see in the bill is the appointment of a proxy—we do not have anything against the proxy—and the system of the authorised investigating person, about which we have quite a lot of concerns, especially because, if that person did not have enough time to ask the proxy or nearest relatives, they would make the decision themselves. That would be a hard opt-out system, which I believe nobody in this room wants.
There is nothing—
Let the other witnesses respond, if they wish to. This is not a conversation between you and Dr MacKellar.
I do not have anything to add on that specific question.
I was about to go on to say that there is nothing ethical about resting on our laurels and not doing something when there is something that we can do. We can implement this bill.
Dr MacKellar mentioned earlier that the bill would make no difference compared with the current legislation. The difference is that the convener and one of my other colleagues have been to Spain and have done that research, gained that knowledge and know that it can happen—that donation rates can increase.
Of course we do not know the exact figures. We never will. However, the approach in the bill has been proven to have led to a 15 to 20 per cent increase in donation rates. It is absolutely right that that would not happen just because the bill is passed and the law is changed. What the witnesses have said about education is absolutely right. We have to get out there and speak to people, and we have to look at that 40 per cent of people who do not register to donate. That happens with education. However, as the convener mentioned earlier, the evidence from Madrid is that they needed that backbone. Then a different type of conversation could happen.
You are right at the front edge of this practice. Surely it is an easier conversation to have with the family if you know that a person wished to donate their organs. It is a different conversation. You are not going to the family to ask for their permission, because the person has already given their permission.
Can I answer that? Currently if somebody is on the organ donor register, that is true—it is a much easier conversation. What I am not sure about is how changing the law in the way that you have proposed would make things even easier.
The culture will be different. It is the culture that was mentioned earlier, that was found in Madrid. As my colleague Mike MacKenzie mentioned, ignorance is not bliss in the eyes of the law. It would be the responsibility of us all to know what laws were in force in this country. That is what would be different.
I am struggling to understand how changing the law will change the conversation. The present law already states that, if the deceased has given no wishes, their organs can still be donated, so from a legal perspective—which is the Parliament’s job—I do not see how the bill would change the conversation.
I agree, though, that we have to change the conversation in society, but we do not need to change the law to do that. We have to encourage more people to discuss those issues with their relatives, their friends and even their landlords, if need be. We have to encourage the discussion, but you do not need to change the law for that.
Then why has it not happened to date?
Maybe that is another discussion.
Seriously, I cannot just shrug my shoulders at 571 people who are waiting for transplants.
This is your last question, Anne.
Mr Wallis mentioned the conversation—I am sorry, I have lost track, because you said that this is my last question, convener.
Well, you are doing a good job—
The part of the bill concerning adults with incapacity would not change the current law. We have talked about education. Somebody mentioned Brazil earlier. To put it on the record and to make everyone aware, the BMJ article that was mentioned put the failure of the opt-out in Brazil down to failures of publicity, lack of public understanding and lack of public support. It was not just because the legislation was changed.
My final point is that we need to change the law and we need to change the culture. It has happened in other places and there is evidence to show that that led to a 15 to 20 per cent increase in donation rates—I would love for it to be a 100 per cent increase, but unfortunately it is not going to be that. Let us try to make a difference for the people who actually need it. Let us make a difference.
What we are doing now is not working. Let us change that. It has not worked to date, so why should we just sit back and think, “Oh well, with a wee bit more education and a wee bit more publicity, it will be fine”? No—it will not. We have to change the culture within—that is what I was going to say earlier.
Dr Wallis mentioned that some clinicians and CLODs are for transplantation and some are against it. I am well aware that Dr Wallis pulled himself back from stating that. It is reality, though; that is the truth. Some people are for it and some are against it. Convener, I am not going to have it that some hospitals do it and some do not. It is people’s lives that we are talking about.
I was going to suggest that we wait and see what numbers the Welsh legislation brings us.
Why would we wait up to another four years when we could do something now? Why do we need the Welsh evidence when we have international evidence?
On the train this morning I looked at a graph showing international donation rates. Comparing countries that have presumed consent with those that do not shows that the range is right across the board. It is not the case that countries with presumed consent always have high donation rates.
Eight out of 10 of the top performing countries for organ transplantation have an opt-out system.
I will leave as evidence to the committee the document that the official reporter asked me to provide. I have the reference here.
Thank you for your attendance and for the written and oral evidence that you have provided.
12:30 Meeting continued in private until 12:42.Previous
Carers (Scotland) Bill: Stage 2