Official Report 433KB pdf
Good morning. I welcome everybody to the fifth meeting of the End of Life Assistance (Scotland) Bill Committee. As always, I remind everyone to switch off mobile phones and any other electronic equipment that might interfere with transmission.
Good morning to our panel; I thank you for being here. I want to ask you about an issue that comes up in more than one paper—the idea of general practitioners or others in the medical profession being gatekeepers, and the power of doctors to impose their morality on the issue. Would any of the panel like to expand on that and to give a view on who, if they believe that the legislation should go ahead, the gatekeepers should be?
I certainly raised that question, partly because we have seen situations in the past in other very sensitive areas, such as abortion, in which the doctor as gatekeeper assumed a significant role, arguably sometimes in situations in which the woman satisfied the legal requirements for having an abortion. It is not possible to dispose of doctors in such situations—that is the case even in Switzerland. For example, someone would at least need access to prescription medicine, so there would obviously be medical input.
That is helpful. The age of 16 is a deciding factor in all of this. Do members of the panel wish to expand on what they said on the subject in their submissions or give their view on the matter?
I addressed the point about why 16 was chosen as the cut-off point in my submission. From a pragmatic point of view and for the sake of drawing up a workable bill, it makes sense to set a lower boundary. Sixteen is the age that medical law in other fields seems to think is important. Consistency demands that it works in this context, too.
In your submission, you talk about maturity testing. How would you set about doing that testing?
Pass. Medics have to make that kind of decision fairly frequently in deciding whether a patient has given valid consent—whether they are capable of making a given medical decision. This kind of judgment is not so vastly different from that. I suspect that doctors are fairly good at recognising when someone is competent—and when someone is not competent. Whether we can give them a rubric with boxes to tick is another question. Indeed, I am not sure whether doing so would be desirable, because people work in different ways. I would have to say that we should trust medical judgment in such cases.
Children are protected under Scots law from decisions that may not be in their best or better interests. In our submission, we give the example of a contract that a child enters into between the ages of 16 and 18, which can be nullified up to the age of 21 if it is thought to be against the child’s interests. In the context of the bill, it would be possible to take a different position with respect to children in order to protect them. If we want to treat children as they are treated in the context of consent to medical treatment, 16 is a clear cut-off point. We also argue in our submission that we might want a minimum level nonetheless, if we are looking to recognise competence. We are talking about a sliding scale; nonetheless, for protection reasons, we might want a minimum cut-off point of, perhaps, 14. Such a cut-off would reflect the traditional Scottish view of pupillage.
When you talk about the age of consent, you must also look at the problem of people with mental disability for whom, even although they are adults, the issues are similar under medical law.
Are you suggesting that we need not one or two general practitioners but a case conference?
Exactly. In such cases, we would need a psychiatrist and so forth. That would not solve all the problems, but it would make the system a lot more robust.
I return to Helen Eadie’s first question. I want to tease out what Professor Laurie said and Dr Brassington’s comment at the top of page 2 of his submission that
If a person satisfies the terms of the bill—if we assume that it becomes law—a health care professional’s conscientious objection should not stand in the way of that person’s achieving what the law entitles them to achieve. The professionally appropriate action would be to refer the patient to someone else.
I have a question for Professor MacKellar, but I am interested in hearing other people’s views, too. Your submission was interesting. I see that your organisation does not have a religious background. If it did, I would understand its points completely, because I respect the views of people who say, “God made you and God should decide when you leave this earth”—that is a matter of someone’s belief.
Thank you very much for the question. It is crucial, as human dignity is a really important concept in this policy area. There has been much misunderstanding about it and there is much confusion: people discuss it using different definitions, so they basically discuss past one another.
I accept the idea that dignity is an important concept and plays an important role in such debates. However, I do not entirely recognise the picture of it that has just been drawn.
I agree with Dr Brassington, but will take what he said a step further following Dr McKee’s question. It will come as no surprise to members to learn that I profoundly disagree with Professor MacKellar and his paper. There is another issue in it that has been touched on: the attempt to build a notion of relational autonomy. We often understand a person’s autonomy as being simply their right to make their own decisions. Professor MacKellar has rightly referred to the fact that there are other considerations that we take into account, or should take into account, when we make decisions. However, the relational account of autonomy does not, as I think his paper suggests, imply selfishness. It is possible for a person to be independently autonomous and also concerned about people around them.
Referring to dignity is a powerful rhetorical device, but the reality of using dignity as a legal concept is very different. Legal instruments notoriously and determinedly avoid defining what is meant by dignity because we cannot agree on what we mean by it. A good example is the UN’s attempt to ban cloning. Ultimately, the only agreement that it could reach was that whatever each country defines as being undignified is undignified. That is not useful in law.
We make laws first by looking at ethics, and we are looking at ethics right now. The way in which we look at ethics relates to our understanding of human dignity. We all have different understandings of human dignity, and I hope that every one of us here understands dignity—especially in this case—as being inherent, at least in some way. Inherent human dignity is
I have two points in response to that. First, if it is true that we all have our own definition of dignity, I struggle to see what objection there is to the bill on the grounds of dignity. If we all have our own understanding of dignity, that is great—we should pass it to the patients and let them decide. That seems to be pretty much what the bill says.
I am not sure that I will permit you to do so.
I will try not to. One can generate an account from autonomy of why people cannot sell themselves into slavery. On the issue of organ donation, perhaps autonomy means, morally speaking, that someone could say, “I’ve got a spare kidney and a mortgage”. Dr MacKellar’s picture of autonomy does not seem to be all that compelling.
I do not want to curtail that debate unnecessarily, but the important thing is whether Dr McKee is satisfied in relation to his question.
My question served the purpose of allowing several views to be expressed, but it is not worth trying to come to a conclusion.
I watched the debate last week, and in particular the evidence from the witnesses in Oregon. I was quite disturbed by the number of times they talked about autonomy, control and independence. They even said that some of the people who want assisted dying are “control freaks” and—I was even more surprised at this—that
But is society created by the law, or does the law reflect society?
The law always reflects society, which is why we have to be very careful.
I am asking whether the change in the law in countries such as the Netherlands has changed society. Your example is that Oregon is a different society from ours, and that is reflected in the law. I am asking whether the introduction of the law has made society worse.
This relates to the debate about the slippery slope, which you also had last week. Slippery slopes can take a long time to go down—they go down either steeply or slowly. The point about any slippery slope, however, is that it goes down. Sometimes, we do not immediately see the effects.
Professor McLean?
Dr McKee has indirectly said what I was going to say, so I will pass for the moment.
That is very agreeable.
It is not like me.
I could not comment.
The original bill that Lord Joffe presented to the House of Lords was intended to cover both voluntary euthanasia and assisted suicide.
My apologies.
Some commentators have indeed made that point, but that was actually what Lord Joffe intended. If we read carefully the reports of the House of Lords select committee on his bill, we see that he was given a strong hint by the committee that he would be more likely to succeed if he restricted the bill to assisted suicide rather than voluntary euthanasia. I believe that to have been a political judgment. It strikes me that one of the logical points in the bill before us is the inclusion of both voluntary euthanasia and assisted suicide.
Professor Kenyon Mason from the University of Edinburgh and I suggest in our submission that, although the bill purports to be about assisted suicide, it blurs the distinction between assisted suicide and euthanasia. Section 1(2) refers to
You suggested an amendment, but do you agree with Professor McLean on whether the concepts can comfortably be accommodated in a single bill, or indeed whether they should be so incorporated? I am driving at the principle; we will get to drafting changes at a later stage.
Yes. From a principle point of view, it is difficult to draw the distinction but if one wants to do that, we have given the example of how one might do so.
Indeed.
I agree with Professor Laurie that it is difficult to draw a distinction between assisted suicide and euthanasia. The three countries in Europe where both euthanasia and assisted suicide are legal are Luxembourg, Belgium and the Netherlands. On looking at the statistics, it is interesting to note that it is mainly euthanasia that is practised in those countries—the doctor killing the person. In a way, medics are more uncomfortable with assisted suicide because things can go wrong. That is why euthanasia is seen as preferable in the three countries that I cited.
I seek the panel’s views on safeguards in the bill such as the length of time that the person must be registered with their general practitioner, the second formal request and the need for psychiatric assessment. Are those safeguards sufficient to ensure the person’s competence in making a decision, or are they too onerous? Could they compromise individuals who are diagnosed with a condition that leads to a very short life expectancy? Surely such individuals would be unable to access the provisions.
Any sensible person who attempted to draft a bill of this sort would almost certainly want to have as many apparent safeguards as possible. I understand the reason for that, but I have a little bit of difficulty with some of them. In an ideal world, it would be nice to think that the GP who is involved throughout the process is someone whom the person knows very well and who knows them very well. That said, how long the doctor has known the person has nothing to do with competence to make a decision. The provision asks a great deal; it is perhaps a hurdle too far. The issue should be about competence, not how long the doctor has known the person.
I have a small supplementary question, on a tiny point. There are other issues relating to the criteria that you would apply. We will not go into whether the word “unbearable” is right; rather, we will take the generality of the presented criteria. If a person meets the criteria that require to be established, how would you square that with an almost unlimited period possibly being needed in which their right can be exercised? That might be more of a criticism of introducing the criteria, but I am interested in your view. There seems to be a conflict.
I think that that point was made clearly in Dr Brassington’s paper. The vast majority of people in Oregon and the Netherlands who seek an assisted death suffer from cancer. I understand that the figure in the Netherlands is around two thirds. Most of them are therefore aware of their prognosis and that they will not get better, and they are often aware of the kind of emotional or physical suffering that they might endure.
Dr Brassington should bear in mind Michael Matheson’s question.
I would like to expand on the point about intolerability. It seems to me that if a person is suffering intolerably, that at least gives a prima facie reason to suppose that their request or consent might not be valid. It seems to make perfect sense to say that people in pain might not think straight, whereas we would have reason to think that someone who is not yet suffering has thought about matters and is coming at them in as clear headed a way as possible.
Time limits are important, as Professor McLean said. We suggested in our submission a further cooling-off period of 28 days. Extending that or making the time indefinite could begin to call into question the validity of the original competence assessment of the individual, so we felt that building in some time limits was important.
The safeguards in the bill are probably better than those in the Oregon act, but there is still a lot to do, as has been said. However, it is impossible for the bill to be 100 per cent safe. If the bill could enable a person to be killed against their will—involuntarily—it should not be passed. Death is irreversible; other conditions are reversible. If one person could die involuntarily because of the bill, the bill should not be passed.
I have two quick points. I will follow up what Dr Brassington said. In his hypothesis about the onset of an illness, having a much longer period between the agreement that a person can have an assisted death and the time when the action must be carried out makes sense.
I did not say that doctors were murderers. We know that involuntary deaths are taking place in the Netherlands. They are rare, but statistics show us that they are taking place.
They do not.
That is why I believe that the bill should not be passed.
Professor McLean said that we know that assisted deaths are taking place at the moment, although they are illegal. If it is clear in law that assisted death is illegal, but it is happening, could changing the law to legalise the procedure in some situations open up even more the possibility for the legislation to be interpreted in such a way that it could be misused, as happens at the moment?
Technically, there is no legislation at the moment—there is a common-law rule about murder, which is clear and brooks no exceptions, other than for self-defence and so on. The drive for doctors to help their patients to die comes from compassion—as Dr McKee described in his initial question—and is not an attempt to break the law. As members will know even from media coverage, some doctors have felt compelled to break the law. We criminalise those doctors.
My next point is also on safeguards, one of which is the involvement of a psychiatrist in the competence test. Professor Laurie’s written submission raises concerns about the lack of a definition of the term “psychiatrist” in the bill. I ask him to expand a little on why it is important for there to be a definition. Specifically, he suggests that the person should have experience and a background in the field. Why is it so important that that is included in the bill?
That is probably a reflection of the way in which the regulation of the medical profession has been going. For example, we now require medical practitioners to have a live licence. The point about experience is really to ensure that we have somebody who can get to grips with the complex notions of assessing competence; who knows all the factors that need to be weighed in the balance; and who can draw on that experience to ensure that they provide a robust and valid assessment of a person’s ability to make the request. That would be a further safeguard.
I understand the importance, if the safeguard in the bill is to be sufficient, of ensuring that the person who carries out the assessment has the competence to do so. However, your suggestion could be interpreted as a form of regulating the profession of psychiatrists, which is not within the competence of the Scottish Parliament.
That is certainly not our intention. Our suggestion is very determinedly about ensuring that the assessment of the individual’s competence is robust.
I understand that, but I am just keen to explore your reasons. I have a concern that it might not be within the Parliament’s competence to do what you suggest.
I have a couple of questions. I think that I can find a very subtle difference between someone giving a drug that will have lethal consequences with the intention of relieving suffering, and someone giving a similar drug with the intention of killing. It is a subtle difference, but there could be one. I am interested in any comments on that.
As I said, we can never be sure all the time. Sometimes we can be sure, but we will never be sure all the time in every single case that is presented in the future.
I think that I understand your unease about the question of intention.
I should say that I have a medical background, which puts my questions into context.
So you know exactly what the problem is.
The other issue ties in with palliative care where people foresee that they will have a very nasty experience and a very unpleasant death. I am sure that palliative care would be discussed with all those people. Do you think that it should be written into the bill that people should experience palliative care, rather than just discuss it? So often, people who think that they want to end their lives change their mind once they are in good palliative care.
I do not claim any expertise here at all, but it seems to me that there are some situations in which palliation can be enormously successful. I do not think that it would be a bad idea to have a trial of palliation to see how people then feel. However, there are also some reasons for dying that palliation can relieve only by sedation. If I am a person who wants to end my life in a manner that I approve of, that might not be the way that I would want to go. There might be some reasons for seeking an assisted death that do not lend themselves to palliation, except for what I believe is called terminal sedation, of which you could not easily have a trial. Pain seems to be one of the lesser reasons why people ask for an assisted death, because palliative care is so good nowadays. Where the source of the request is pain, a trial of palliation would make perfect sense to me, but I do not know that pain is the major reason why people ask for help.
We will move on. I call Margo MacDonald.
There are a number of points to follow up. Having read the submissions, for which I thank you—even though I sometimes felt as though I was in an ethics tutorial—I have already decided that section (4)2 could stand being amended.
I do not wish to interrupt you, Margo, but there is a danger here. I am anxious that you have an equal opportunity to question or cross-examine each panel of witnesses that appears before the committee and addresses our questions. The slight danger is that you give us a running commentary on how the bill is developing in your mind. I am not against that, but the purpose of the session is to give you, as the promoter of the bill, the opportunity to test the evidence that the witnesses have led. Indicating to the committee that you have in mind a number of changes is helpful, but we must try to ensure that the answers that the witnesses give in response to committee questions are tested by you, as the promoter of the bill. That will give the committee a balanced view on matters. If we have put a question in a way that was slightly prejudicial to the subject matter, or that was constructed as the Latin num and nonne—in other words, expecting the answer no or yes—you as the promoter can pick us up on that and force the witness to give their view. In that way, we will get a balanced view. It would help the committee if you would address questions to the panel.
I was trying to do that. On a number of occasions, I would have liked to come in on the committee questioning. I would have liked to have followed up on Professor MacKellar’s assertion that, if one wrongful death were to result from the bill, it should not go through. In that case, what about car driving? I wanted to take issue with elements of the philosophy that he was expounding, but I did not want to crash in on the questions that others were putting.
With respect, there was a minor and very civilised disagreement between Professor McLean and Professor MacKellar on the point. Unless I missed something, both sides of the argument were exposed fully before the committee. I am interested in your questions. The panel are still at committee. We are anxious that you should ask questions of them.
I do not have any more questions at the moment.
Let me respond to the point about driving. In medical ethics a lot of our work involves balancing advantages against risks. Driving is legal in every country and I agree that there are lots of deaths, but we balance the advantages against the risks. On the issue that we are discussing, I think—other people who are here do not agree with me—that the advantages and risks do not balance out.
Because?
Because of the risks involved. There is the risk of people dying involuntarily and the risk of undermining the whole concept of inherent human dignity. There is a risk of saying that society accepts that in some cases a person’s life is unworthy of life. For me that is an important risk. Of course I see the advantages of euthanasia and assisted suicide, but I do not think that the risks and advantages balance out.
What advantages do you see in euthanasia and assisted suicide?
There is the advantage that it is possible to end suffering for a certain person, be it physical suffering—although I agree with Professor McLean that physical suffering can now be appropriately addressed, especially in the United Kingdom—mental suffering or existential suffering. All that suffering can stop with euthanasia and assisted suicide. I agree with that. I understand that. However, I also see all the risks involved, and for me the risks do not balance out.
We must be careful to distinguish between involuntary dying and non-voluntary dying, which I suspect have been conflated. I hope that no one will come out in favour of involuntary dying. Non-voluntary dying can be a little more of a grey area, for example in cases such as the Bland case.
I want to pick up on something that Professor MacKellar said. It seems to me entirely misleading to suggest that legalising assisted suicide and/or voluntary euthanasia means that society has decided that some people’s lives are not worth while. The individual person has decided that they do not want to continue to live, and if that means that they have decided that their lives are not worth while I do not know who else’s choice that should be. It is not society saying, “Your life is not worth living”; it is the individual saying, “I do not want to continue in this particular condition”, and society is respecting their dignity by allowing them to make that choice.
That is what I had in mind when I said that people seem to have forgotten that the bill rests on autonomy.
We are here in the Parliament not just to talk about respecting people’s wishes but to look at how valuable, worth while and meaningful a life is. I believe that the Parliament should never say that a life is unworthy of life. It is the Parliament that decides. That is why euthanasia, murder and assisted suicide have been prohibited in society so far.
This is an example of what might be called principles-based regulation. I completely agree with Professor MacKellar that we need to be absolutely clear about the principles upon which the legislation would be based and the relative weight that would be given to issues over which—as can be seen in this panel—people legitimately disagree.
I am taking that on board.
Sorry, I do not understand. Can you develop your question?
You said that there was no real autonomy for people to decide on the worth of their life and whether their life should continue. When people are sent to war, is it just accepted that they have no right to say no?
In the past, if you were a member of the Army and you were sent to war, you had your orders to go. In that sense, people did not have any autonomy to say, “I don’t want to go to war.” In a way, war is an interesting case. In war, people suffer incredibly because they want to defend their country and to defend the inherent human dignity of the British people. That is why British soldiers are going to war and are suffering. That suffering of the soldiers is a measure of how important the concept of the inherent human dignity of the people of Britain is.
I think that I am in danger of having to award degrees in moral philosophy at rather a late stage in the morning’s proceedings. I think that we have exhausted our questions, so I thank each and every one of the members of the panel both for their written submissions, as I said earlier, and for their contributions this morning.
I welcome our second panel this morning, which comprises Mark Hazelwood, the director of the Scottish Partnership for Palliative Care; Elaine Stevens, chair of the independent association of nurses in palliative care; Katrina McNamara-Goodger, head of policy and practice for the Association for Children’s Palliative Care; Stephen Hutchison, a consultant physician in palliative medicine at the Highland Hospice; and Dr Chris Sugden, medical director at St Andrew’s Hospice.
I turn to the paper provided by Mark Hazelwood. In the early part of that paper, you raise a number of concerns about terminology and practice in palliative care and the way in which the terminology in the bill is framed. You raise concerns about the way in which that could impact on practice within palliative care. Can you maybe expand a little further on that issue? Given your concerns about the use of the terms “end of life”, “dignity” and so on, what would your suggested alternatives be?
I preface my comments by saying that the Scottish Partnership for Palliative Care is not able to hold a position in principle on the legalisation of assisted suicide or euthanasia, because our membership includes organisations—the most notable example being the Scottish health boards—that are institutionally unable to hold a view on matters of that sort.
I can understand some of your concerns about confusion. Is it your view that, in order to take some of the edges off the debate, the bill has tried to hide under the idea that what it proposes is a bit like palliative care and is not so much about assisted dying and voluntary euthanasia? Is it your concern that that will start to become confused with the role of palliative care in hospitals and hospices in Scotland?
We are not trying to impute a particular intention to the bill and the way in which it is worded. We have drawn attention to what we regard as a real lack of clarity in a concept that is at the heart of the bill and have suggested that MSPs think about what consequences that might have for the practice and provision of palliative care.
Is it reasonable to assume that the driver for Margo MacDonald’s bill may be a perception among the public and, perhaps, some MSPs that palliative care is not adequately funded in Scotland? I have dealt with cases of constituents to whom palliative care was not available. Sometimes palliative care is needed at very short notice, but one health board cannot deal appropriately with other boards or respond quickly enough to patients. Are such issues the driving force behind the bill and why some people in Scotland think that it is important?
Some research that has been carried out in other countries shows that when people are asked why they have pursued a request to access such a service, often they are motivated by a future-looking concern and anxiety, which may be grounded in a lack of knowledge about what is likely to be available in future circumstances.
I will add a comment on equity of access to palliative care from my professional background as a palliative care educator. There are huge constraints in Scotland in relation to the training of health care professionals. Some people cannot access adequate palliative care because the staff in the area where they are being cared for do not have the knowledge and skills to provide it.
I will make a point that covers both the questions that have just been asked. What we call the bill is more than just a matter of semantics—it is really important that we be absolutely crystal clear about what law is being proposed. To that end, I suggest that such a bill should be called the physician-assisted suicide bill, the voluntary euthanasia bill or something similar that leaves absolutely no doubt as to what we are talking about.
I agree with the points that Stephen Hutchison made. The vast majority of the patients who come into a hospice’s in-patient unit—or even an out-patient clinic, for that matter—are extremely vulnerable and very anxious, especially at first contact. The bill uses the term “End of Life Assistance”; in our specialty, we use the word “assistance” quite often. A vulnerable person may latch on to that, become confused and mix up our assistance with the wording of the bill.
The submissions—in particular, Mark Hazelwood’s—raise issues about
That was one of three themes that the partnership raised in its submission. We felt that it was really important that practitioners be left in no doubt about what they were allowed to do and not allowed to do. Within that, we also felt it important that they know the standards by which their conduct might retrospectively be judged, were there to be a complaint or investigation for some reason.
I would like to press you a little further on that. You are saying that if a GP does not feel able to advise on forensic or other matters, he or she should take advice from another expert. Who might such an expert be?
As we said in our submission, the bill talks only about the medical practitioner and the psychiatrist, whereas some of the matters of judgment in question seem to be ones that do not necessarily fall within the expertise of those practitioners. I am not sure that we have a suggestion to make about who else might be able to undertake such investigations. In a way, it would depend on the standard of investigation or diligence. If, for example, it were deemed necessary for the practitioner to have an understanding of any financial pressures or circumstances surrounding the request for assistance, I suppose it could be possible that the GP or medical practitioner might wish to take advice from an accountant. We did not get to that level of detail; as an organisation, we wanted to highlight the fact that the bill does not contain the detail that would give guidance or reassurance to a practitioner who had to make such decisions.
I can see that the process would be relatively easy and straightforward if we were talking about a criminal records check, but it would be a lot more complex if it involved the social dynamics of the family background. I, too, find it difficult to think who such an expert might be.
I would like to discuss the wider issue of the relationship between palliative care and the proposals in the bill. My background is that before I became an MSP I was a general practitioner for many years. In fact, I sent Derek Doyle some of his first patients when St Columba’s Hospice opened in the 1970s, and I worked in close contact with Macmillan nurses in the practice. No one is more convinced than I am of the benefits of palliative care and its ability to transform the lives not just of patients, but of relatives. It is a wonderful development, and it is quite strange to think that it did not exist at all when I started in practice. I am entirely on the side of palliative care.
One of my concerns is that what relatives say might reflect their own distress and not necessarily the distress that the patient is experiencing. We find that that is quite common, so we have to be careful how we interpret what a family member says.
That was not quite my point. I accept that you can do a lot for lots of people. However, sometimes what you can do is not enough. I have come across the issue in my practice—not often, but I have come across it. Do you not have a concern that there are people whom you cannot help further?
Of course I have a concern about that. The patient whom I mentioned gave me a lot of heartache, because I did not feel that I was able to do anything for him. My heart would sink when I visited him, because I felt powerless to help him.
In 25 years of practice I have come across a few patients for whom palliative care could not address every need. I acknowledge that. What is the alternative? I have come away from patients’ houses or hospital ward visits scratching my head. I have concluded first that the number of such patients is—thankfully—quite small, and secondly, that if we were to introduce a law for the few patients that we are talking about it would run the risk of being at the expense of the many anxious and vulnerable patients whom we see day in, day out, who would be affected in some way, particularly given that the bill involves doctors as participants in end of life assistance. That would far outweigh the current situation, in which we occasionally scratch our heads and agonise about whether we could have done something better or taken another avenue.
We heard from witnesses from other countries last week and we heard evidence about what happens in countries from which we did not have witnesses. The picture seems to be variable. In Belgium, which brought in a law on euthanasia, there is a fairly good palliative care structure. In the Netherlands there is no such structure, but we were told that the palliative care system improved enormously in the years after assisted suicide was permitted—I am not saying that it was cause and effect. We heard the same story in relation to Oregon. Does that not show that, in countries where such legislation exists, palliative care clinicians do not have as much to worry about as you are concerned that they might here, because palliative care services can improve or stay good despite the introduction of such legislation?
We have to be careful to ensure that we are comparing like with like. In a number of the countries that you have mentioned, the palliative care services are quite unlike what we have here. Mark Hazelwood has already mentioned the paper that states that the United Kingdom leads at least 40 other countries that were included in the survey in terms of quality of palliative care, and we are privileged to work in that environment. The situation is not the same elsewhere.
I wonder whether the developments in palliative care are a sign of a society’s maturity. The fact that the issue of death and dying is raised in any way might be why people start to think about the associated services, which might lead to the development of the palliative care services. However, the UK has a long history of palliative care, and initiatives such as the living and dying well strategy give us the opportunity to develop palliative care further. We do not need the End of Life Assistance (Scotland) Bill to take us there; we already have those opportunities.
One or two of the submissions said that not many of the people in your care ask to have their lives terminated. Might that not be, at least in part, because how you feel on this is well known? At the start, the hospice movement was based very much on religious grounds. I know that things have changed now, but I believe that one of the three founding principles of the organisation that Elaine Stevens represents is to fight against the introduction of legislation of the sort that we are discussing today. Is that correct?
The principle is to oppose its introduction, not fight against it. I appreciate that that might be semantics.
The case of another recent patient illustrates that well. We are exceptionally rarely faced with serious requests to have a life terminated, but we are commonly faced with people who express that level of distress. Two or three weeks ago, I tried to engage a patient in that sort of discussion, in the confidence that he would not think that I was trying to steer him down that path—I believe that I could not have that discussion if the bill became law, but I can have it now—and I was able to ask him about his level of distress and whether, if we were able to do something to end his life, he would wish us to do so. He did not answer me verbally; he held out his arm as if to say, “Give it to me now.” He was clear about that, and his circumstances were such that you might think that that was legitimate.
The submission from Elaine Stevens’s organisation says that it would be a good idea to ensure that if the bill became law, the patient was given the kind of palliative care input that you are talking about.
It is perhaps a legal point, and I am not qualified to discuss legal issues, but how right is it that, in society, we should introduce legislation with such great potential if we are going to use it in only a very small number of cases? I am not asking you to answer that now, but it is an issue that law makers need to bear in mind.
I will take it as a rhetorical question.
One of the things that I have struggled with when considering this bill is its practical implication for hospices and those who deliver support, care and advice to individuals who require palliative care. A number of months ago, I met people from the hospice in Strathcarron, in my constituency. I was left in some uncertainty about how staff in a hospice would react if a patient who had been an out-patient for several years and became an in-patient decided to exercise the rights that this legislation would give them. Would the person physically have to leave the hospice? Would the hospice and social work withdraw care if the person returned home? To what degree would the practical support that hospices normally give to people be withdrawn in such circumstances?
It would impact hugely. In our submission, the board of management and medical team at St Andrews Hospice in Airdrie make the point that we oppose the bill. We would feel very uncomfortable if it were to pass into law. That said, we have to treat and look after our patients without prejudice. If the time came when someone wanted to follow through the process and wished end of life assistance, we would have to find a mechanism to discharge the patient from the hospice. The burden that would be placed on the other patients and staff is huge. I have not yet done a poll of all hospice employees to determine their stance on the bill.
Just—
Both Mr Hutchison and Mr Hazelwood want to respond to the question.
Before they do so, I seek clarification from Dr Sugden. Let us say that someone has a 28-day window in which to exercise the right to end their life under the legislation, if the bill is passed. If someone chose to exercise that right on day 26, could they remain in the hospice for the intervening 25 days?
The question raises some of the extremely challenging issues that those in palliative care face. One reason why those of us in palliative care oppose the bill is because the provisions are fundamentally at variance with the principles and practice of palliative care as it is defined by the World Health Organization. They are also at variance with the concepts that Cicely Saunders, the founder of hospice care, elucidated. This sort of action is fundamentally at variance with those principles.
I have two points to make. The first point is the practical issue of arrangements for staff who have a conscientious objection to being part of the process. We mentioned that in our submission. We ask MSPs to consider the fact that the bill is silent on the matter. The second point does not form part of our submission but arises from my reading the National Health Service (Scotland) Act 1978 in relation to the Palliative Care (Scotland) Bill that the Health and Sport Committee is considering. The End of Life Assistance (Scotland) Bill is a bill that grants rights to individuals; the extent to which NHS boards and voluntary hospices will be mandated to provide such a service is unclear. I think that the assumption that is made in the bill is that NHS boards will pick up such assistance—it will be a service that they are obliged to deliver. I am not a lawyer, but my reading of the 1978 act prompted a question: to what extent is end of life assistance, or steps towards such provision, consistent with the 1978 act?
The committee anticipated the question. We will write to the Government to seek clarification on whether the provisions of the 1978 act are consistent with end of life assistance as it is envisaged in the bill. If and when we receive an answer from the Government, we will place it on the public record. We can then have the debate that you propose in a more informed context. The question is an interesting one. We do not know the answer. As I said, we are actively pursuing the matter.
I will finish the answer that I was giving. The bill does not mention conscientious objectors—our hospice, as an organisation, would come under that.
The point is not covered in our submission, but on the concept of conscientious objection and of services withdrawing from providing palliative care because of a fear that they might be asked to move on to provide end of life assistance, I reiterate that young people—16-to-18-year olds—who are moving from children-focused services into adult-focused services already find the transition and getting appropriate services quite difficult. The legislation will bring added complexity to a difficult phase of their lives.
Dr Hutchison mentioned another paper that is referenced in Highland Hospice’s submission. Would it be fair to say that hospices in Scotland are uncertain at which point they would withdraw care should the bill be enacted and that you would have to give further consideration to that should it be enacted?
Absolutely.
Dr Hutchison, will you elaborate on your response to a previous question? You hinted that some of the conversations that you currently have with terminally ill patients might be different if the bill were enacted. In the Highland Hospice submission, you state that your work
I would find it extremely difficult because, inevitably, if I were to raise that sort of issue with a patient, or if they were to raise it with me, by definition assisted dying would have to be on the agenda, which I would find very uncomfortable. A number of safeguards have been proposed. Essentially, people would be allowed to withdraw from the process if they wished. In doing that, I believe that they should be able to discuss openly with their doctor the concerns that are in their mind, but I think that the legislation would inhibit that dialogue.
Dr Sugden, you state in your submission that the bill does not elaborate on the effect that such legislation would have on families and close associates. We heard from Elaine Stevens that families are often comforted by the palliative care that their distressed relatives receive. You are obviously implying that the reverse might happen if the bill is enacted. Will you elaborate on that?
It is currently unknown how relatives cope with assisted suicide or voluntary euthanasia, but it is fair to say that death is always messy; it is never clear cut. Things are always left behind and there is the possibility that there might be problems for relatives looking back, in bereavement, knowing the point at which a person had voluntary euthanasia or assisted suicide, and reflecting on whether it was the right thing to do. I say “might” because I do not have evidence for that.
There is very little evidence on that. I think Professor Sheila McLean in the previous panel mentioned a study showing that a small number of people were comforted by the fact that the patient had had assisted dying. However, we are talking about one very small study. Nowadays, we normally look for rather more robust and rigorous scientific evidence.
I might be wrong, but I do not see anything in the bill that says that you would have to raise the issue. Surely it is all about the patient making a request for end of life assistance. It does not say that such an option has to be counselled as part of the services that you offer.
I am not suggesting that I would specifically raise with the patient the question whether they would like to have their life terminated. What I am saying is that the legislation might inhibit my ability to engage the patient in dialogue that allows them to express their distress—sometimes, perhaps, to the extent that they express a wish for their life to be over. That brings us back to Elaine Stevens’s point that we can pursue and often deal with many such matters.
Mark Hazelwood referred to one issue to which the committee is alert, as the convener pointed out—the 1978 act. I would be interested in hearing the witnesses’ views on the conflict of interest issue raised in Mr Hazelwood’s submission. Sometimes with legislation there are unintended consequences and Mr Hazelwood suggests that we might see the rise of specialist GPs or simply specialists providing such services in Scotland. What societal pressures might arise if GPs decided to make a private living from this legislation? Someone this morning cited the example of selling a kidney to pay their mortgage. Might some GPs think this to be a good area of private practice?
The bill contains a lot of provisions on conflict of interest and the Scottish Partnership for Palliative Care feels that to be a positive move. The point in our submission is quite narrow and relates to section 5(2)(b), which concerns practitioners not levying charges or making income that might raise suggestions of a conflict of interest. Our point is that, although there might be safeguards covering individual instances, if there were to be a degree of specialisation of practice such that an individual practitioner became involved in quite a lot of this activity and a significant proportion of their income came from such work, it might become quite difficult to be clear that there was not a conflict of interest on their part. It is probably better to ask others about changes in societal attitudes or pressures over time, as the partnership’s submission does not really go into that territory.
I might have misunderstood you, Mr Hazelwood, but surely the fee would be paid for the work done, even if the doctor decided that the patient did not warrant end of life assistance. It cannot be the case, surely, that the doctor gets the income based on coming to a certain conclusion. The fee would be paid one way or the other, surely.
It is a hypothetical situation, obviously. The point is not made in respect of individual decisions, but you can see that someone who wanted to build a business or practice of this sort would understand that people who want to get access to the service will tend to gravitate towards a practice in which a high proportion of requests are approved. That is the logic behind the point.
This is an interesting area. What if some members of society cannot afford the fees? We do not know what level the fees might be set at. We do not know whether the 1978 act might need to be adjusted or altered. However, if it were not amended, we could have a scenario in which some GPs decided that they were only going to practise in this area, and fees could be whatever demand allowed them to be. Is that what you envisage?
To be honest, it is difficult to speculate about the pattern of service or how various members of the profession might respond to the opportunity.
With respect to Helen Eadie and Ian McKee, we are involved in a discussion of a situation on which there are three pre-conditions, and we are then asking the witnesses to speculate on the basis of an undetermined opinion. I think that we should move on, as I am not sure that this is wholly—
With respect, how will we revisit the issue once we have received the clarification that we seek?
On the point to which Mr Hazelwood alluded, it is important to determine whether the 1978 act applies. Only at that point will we be able to determine whether payment is a matter for the NHS or private practice. It is unfair to ask Mr Hazelwood to speculate about what the basis of the fee might be before we have the information.
I was following up Mr Hazelwood’s statement rather than asking him to speculate.
Indeed, but I think that we got into difficult territory.
I will steer away from any such speculation. However, the fact that the issue has come up is recognition of the point that most doctors are not in favour of doing this and will not wish to be engaged in it. However, it also touches on doctors’ competence and case exposure. I will not go into that in detail just now, but you will find some discussion of it in the submission from the Royal College of Physicians and Surgeons of Glasgow.
You will be relieved to hear that I will move away from that topic, convener. I respect your views on that.
I will start by saying that I know little about the operations of a procurator fiscal’s office.
I have six questions. Can I ask them all?
Certainly.
Dr Hutchison, if a hospice patient refused treatment, would he or she have to leave the hospice? Refusal would be their legal right.
I am not entirely sure what you mean. Are you asking about a situation in which a patient refused the interventions that we were willing to offer?
I am asking what would happen if the patient refused treatment.
In that case, there would be no point in their remaining as an in-patient in the hospice.
Would they have to leave?
I think that they would wish to leave.
Do you not know? I am asking you because you work in the hospice movement.
In order to maintain a service—bearing it in mind that we have only a small number of beds—we have to recognise that, when people have completed the course of treatment that we can provide for them as best we can, or have declined treatment, we must discharge them, because there are a lot of other people who need our care.
Let us suppose that the patient’s attitude is that he or she is grateful for what has been done but has had enough and does not want any more, so goodbye, and thank you.
We would respect that.
On the idea that a GP might become a specialist in euthanasia, do you agree that the proceedings that are outlined in the proposed legislation refer only to a small number of people? The witnesses are all nodding. In that case, do you think that there would be sufficient volume of cases for someone to make a lot of money by becoming a specialist?
I think that we would be speculating again.
I am sorry, but you said quite definitively earlier that the proceedings referred to only a small number of people. If that is the case, what is your fear about GPs becoming specialists in euthanasia?
My fear would be for the health, in the global context, of the doctor who was providing that service. I have no idea what level the fees would be set at and, as we have said, we cannot speculate on that. However, the matter raises itself because doctors have to work in the context of competency, and the small number of cases means that it is likely that they would not arrive at that level of competency.
Do you agree that there is such a small number of people involved in this issue that it would be most unlikely to throw up a new specialism?
I agree that the current estimates and the figures that we see in other countries are fairly low. Nevertheless, in places where such a law has come into effect, the number of people availing themselves of the option has increased. I do not know what the numbers will be. It might take many years or many generations to see how society will develop.
What countries are you talking about?
I am talking about the situation in Oregon.
How do you know what it is?
Annual statistics that are returned show that the numbers have steadily increased.
No.
They have increased, reached a plateau and dropped slightly, but they are still higher than they were.
So, we get back to Mark Hazelwood’s comment that we could do with a bit more information on how the stats are compiled.
I think that he was talking about how the statistics for the monitoring of the process and subsequent monitoring should be done.
I will not pursue the matter because, to be frank, I do not think that you are all that interested in Oregon and I am much more interested in the effects of the proposed legislation.
No, it does not always work. We have all already said that specialist palliative care interventions do not work in every case, but that does not lead my association to offering people assistance to die. We think that that is a step too far.
I make it plain that the bill does not propose that you should offer assistance to die. Are you aware of that?
Oh, yes.
If your specialist intervention does not comfort the person, work as you want it to or have the effect that you desire, what do you do then?
We journey along with the person as best we can and will be with them as partners in their distress and end of life care. We do not abandon them.
Has nobody ever said to you, “I want to finish it now”?
They have done, in the past. In the palliative care teams of which I have been a part, we have agreed with them. Obviously, assistance to die is not legal in this country so we journey along with people in their distress and look after them in all the ways that we possibly can to make the last part of their lives as comfortable and of as good a quality as we possibly can.
However, you accept that you cannot get rid of the distress in every case.
We would be foolish to say that we could help all the people all the time, but that does not automatically lead us to wanting to offer end of life assistance.
You should be a politician if you think that you cannot please all the people all the time.
From my association’s point of view, there are issues relating to conscientious objectors. Many practising nurses, although not all, would not want to be involved in implementing such legislation.
The bill says that they would be able to refuse to take part in any procedure.
We would like that to be strengthened.
I agree with that.
For us, the major issue is age. Many of the points were rehearsed this morning. We find it extremely difficult to accept that the bill makes age the determinant of the capacity to make decisions. It is not about whether 16 is too young or too old, but the whole concept. We are concerned about the ability of those who judge an individual’s ability to make decisions, the involvement of young people—and the right people—in assessment, and the ability of those involved in assessment to deal with the young person’s stage of emotional development. Those are all issues that we would like to be looked at in amendments.
Do I infer from that answer that you do not think that psychiatrists have enough knowledge?
I am keeping my comments to the young adolescents—the teenagers—about whom we are talking. The services that many adult psychiatrists offer will consider the pathology that relates to adults, but that does not necessarily relate to the pathology of children and adolescents. We acknowledge that child and adolescent mental health services are a specialty in mental health care that is more able to examine the emotional development of young people. However, those services will not necessarily be able to consider decisions on assisted suicide.
I will mention that to the psychiatrists when they come to give evidence.
I do not know whether your question was intended to identify a number of practical issues that, if they could be addressed, would gain the palliative care sector’s support for the bill. I find it difficult to separate the practical and the ethical; we have to consider both globally.
We did not document proposed amendments in our submission; the thrust of our approach was to highlight areas for consideration. However, I will mention two specific areas that are highlighted in our submission. I have already been asked about the first, which is the terminology “end of life assistance”. In our submission, we drew attention to the fact that alternative and more clearly defined terms—euthanasia and assisted suicide—are available.
Am I correct that Dr Hutchison identified that the basis of his objection to the bill is ethical or moral, rather than legal or clinical?
It is both. My point is that it is not possible to separate one from the other. I may have ethical objections to provisions that other people would consider perfectly practical and legal or I may have practical and legal objections to something that other people consider ethical. In this situation, we have to take both together; we cannot separate the two.
I presume that you accept that somebody with a different ethical stance from your own would give me the same answer.
I defer to the more learned opinion about ethics and bioethics, such as you heard from the first panel of witnesses.
I thank all the witnesses on the panel for their contributions. Before I conclude the meeting, I remind members of the committee and the public that the next committee meeting is scheduled to take place on Monday 20 September, when we will take further oral evidence at stage 1 of the bill.
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